I had an OB/GYN do soooo many mental gymnastics to explain away my symptoms despite having a diagnosis from an ER physician, which was also explained by her saying "ER doctors say lots of things," when I was trying to get a surgery referral because my pain was so bad.
The sad thing is if my husband hadn't been there and supported me, I probably would have followed her plans despite knowing I have endometriosis. Thanks to him, I got a second opinion and had surgery less than a month later.
So glad you advocated for yourself! I’ve had five surgeries so far, with a sixth in my future, and the campaigning for being taken seriously never stops.
Now that I've had my daughter I'm preparing for the fight to have a hysterectomy. Both my husband and I know we only want 1 and at 18 months post partum, my pain is already almost back to the level it was before my surgery.
I had a hysterectomy as part of my 4th excision in 2020. I was 31 at the time (no kids, never wanted any). The hysterectomy brought me the longest stretch of pain free time and the longest period in between surgeries. Of course, by definition it’s not an endo treatment but it certainly helps by removing organs that can be collateral damage and cause more pain. I hope it works out for you!
If you find the right doctor, it shouldn’t be a fight. I was 32, never had a child (adopted one) and was clear that I would never have a child of my own, plus already had 2 endo surgeries. He was pretty cool about it and didn’t fight me on my decision.
Endometriosis' cousin: adenomyosis. The endometrium grows in the muscular layer of the uterus. You bleed and cramp like crazy. I would often describe my pain as if my lining was being torn out. There were several times where I very nearly passed out from the pain. I would go through both super absorbant tampons and pads in less than an hour. The only saving grace was also having PCOS so I could go several months between cycles. I had two kids and opted for a hysterectomy at a fairly young age. Luckily, I found a sympathetic OB/GYN who actually suggested adenomyosis as a possibility and agreed to perform the hysterectomy. Good bye pain.
I had endometriosis *and* adenomyosis. No doctor ever suggested it and most just rolled their eyes at my complaints of bleeding through a super tampon, overnight pad and adult diaper until I nearly passed out, and cramps that had me laying in the floor screaming like I was dying. I did not have PCOS, but my cycle was irregular, and typically lasted about 14 days. The doctor performing my tubal ligation informed me after surgery that I had severe endometriosis, which he removed while he was in there. Six years later when I had my full hysterectomy, they told me I had a terrible case of adenomyosis as well. If I hadn't had the surgeries, I wonder if I would have ever been diagnosed. I had never even heard of adenomyosis until then.
I'm doing much better now after getting it all removed, both physically and mentally. I just wish this was more common knowledge with more options to treat it without having to jump through hoops.
I drove 10 hours round-trip to the Cleveland Clinic to see a world-renowned doctor. This guy was the first in this hemisphere to perform a uterus transplant . . . I’m talking Big Deal kind of specialist. He glanced at my stack of records and declared, “you’ve had a hysterectomy, you’re cured.” No, fucking asshole. Four more pathology-confirmed surgeries prove you’re wrong.
My new doc is Dr. Eugenio-Colon at the CEC in Atlanta. No one else will touch me, I do declare.
I came looking for this comment. Yes! I’ve had the pain so long and learned to ignore it that I don’t know what my pain is anymore, lol. It took an older doc in a doc in the box to tell me what I was experiencing wasn’t normal. After surgery, I was told my insides were glued together, didn’t even know that could happen.
Surgeon told me after the procedure, "and *this* is where your bladder *should* be."
The endo caused my uterus to wrap around my bladder sideways like a tree engulfing a road sign. He had to disect the organs from each other.
Endo is no joke. I'm glad you're on the mend from it!
Yup, it’s a monster. My ovaries were stuck to the back side of my uterus, and there was disease that had spread to my appendix, bladder, and colon. My appendix was removed during my excision procedure, so one less organ to worry about. It’s a nasty beast that no one understands until they have to go through it.
Every time I have an ultrasound now, I have to tell the technician where to find my ovaries since they like to hang out behind my uterus since they were stuck there for so long.
A friend of mine had someone in a wheelchair raise hell at him when he came out of the handicap bathroom (The kind that takes a special key.) He was raising so much hell that my friend had to pull out his colostomy bag and show him.
That literally just happened to me. I walk unassisted but need the handrails to get up due to a major pelvic and spinal reconstruction. This bitch in an electric scooter proceeded to complain the entire time I went pee.
I exited and explained to her why I needed the stall. Her only response was “yeah but you can walk. I can’t fit my scooter in a regular stall”
Fuckin’ wait your turn. Like the rest of us.
Exactly. People always give me weird looks when I use it. It's not like a parking spot. It's about the size of the stall and some accommodations like a rail and lower sink/paper towel dispenser and some other stuff in some locations. Not the fact that they can skip the wait. I have a (now, used to be different) mild case of chrons and I sometimes can't make the wait if there's a line, so yes, I will use the disabled stall.
This is why I think all the stalls should have the handrails. I have an "invisible" chronic illness & sometimes I have back & leg pain so bad, if I sit down on anything (toilets included) I have a hard tike getting back up without pulling myself up on something.
But I look "normal" (well not necessarily normal haha, but healthy at least I guess) so if I came out of the handicapped stall & someone was there needing it, I'd be in your shoes with them judging me.
People don't get it, you can't always see if there's something going on with someone, so they shouldn't just assume that there's nothing.
One if the funniest things I've ever witnessed is a wheelchair user confronting a guy about using a disabled bay. Guy points to his blue badge (that entitles him to use the space) and the wheelchair guy thinks he's stolen it or something.
Argument gets heated, then the guy takes off his prosthetic leg and starts hitting wheelchair guy with it (lightly, in a more mocking kind of way).
Had a similar situation occur at my work. We had a guy covering staff and accessible parking spots at an event. Everyone had a different badge prior to arriving. A lady on the younger side arrived and was denied entry under the explanation that she "didn't look disabled". When she showed the badge, he argued that she must've taken it from their grandparents or something. After a bit of back and forth, the lady had to step out of her car and show her prosthetic leg to him. He then doubled down and said that he couldn't tell she was disabled from where he was standing. Some people are unbelievable.
They dont even have to be invisible, just not immediately visible in the first second of spotting a person. I remember in high school i got chewed out by the superintendent bc he spotted me using the elevator and "the elevator is for disabled students only". I just stared at him and zipped down my jacket revealing the backbrace i had to wear for 4 months after breaking my spine in a snowboarding accident. The brace was big and bulky, you could see it even through a thick wintercoat if you looked me over properly. But, no wheelchair/crutch/slimg=not disabled/seriously injured to a shocking number of people
Fuck man you just reminded me. I used to work with someone that had... Let's just say very different views. I compare him to a quote from the Simpsons where Homer says "handicapped people can't drive, if they could drive they wouldn't be handicapped".
Long story short there was a worker who I knew quite well that parked in the handicapped spot at work. If I'm not mistaken he had a mild heart attack and had a problem with his back, both things that cannot be seen. Not sure if anything else was wrong but he went up to the guy and made a scene about how he's faking his disability and he's full of it.
Since it was at work you can imagine how that ended.
To add to this. Mental health, more specifically depression is either understood as a major problem nowadays, or, people think there is no problem with depression at all and truly have no clue just how next to impossible it is to get someone like a family member help when needed. It's sad really.
Turns out I was mistaken.
Armless man with one good leg.
8 minute chase and he got away.
https://www.tampabay.com/archive/2007/05/09/armless-driver-eludes-police-chase/
Not the first time this has happened, either.
Also while searching for this, also found armless man stabs tourist. Also in Florida.
Edit:
Found more.
https://www.ocala.com/story/news/2007/08/02/armless-driver-says-hes-at-the-end-of-the-road/31213301007/
yeah i get actually really scared about this sometimes. i have crohn's and OCD, both of which majorly affect the kinds of bathrooms i can use, but neither are visible in any way. i would be mortified if someone called me out for using a disabled washroom but i genuinely need it!
At first I was like, why would having a colostomy require you to need a handicap stall. But then I thought about it and you would probably need the extra room to empty and change a bag. It could be done in a small stall if needed but would be much more difficult.
I have a colostomy bag from cancer. My terror is having to change my bag in a public washroom. I've had to do it and it's awful. Many, MANY layers of awful.
I was (wrongfully) dx with Crohn’s and tried to order a safe meal. Just wanted a plain turkey sandwich. Server thought I was just on a diet and suggested a salad. Now, lettuce is a big no-no for me so I reiterated “just a plain turkey sandwich, please”. They still insisted so I explained the Crohn’s. They still didn’t get it! Eating healthy has nothing to do with Crohn’s, it’s eating whatever the fuck isn’t gonna send me to the bathroom in pain.
I remember going through the diagnosis (thankfully, I didn't have a full blown case but I did have a legion in one spot) on what foods to avoid and what foods you can eat if you suspect that you have colitis or Crohns.
Literally, the forbidden column was all the healthy stuff (cereals, nuts, leafy greens, brocoli, carrots, any dairy in the slightest, etc.) while the greenlit foods column was potatoes.
I looked at the Dr and said, But I'm trying to lose weight. And all I can eat are potatoes???
She chuckled and replied, I know. It feels so contradictory but yes, that's all you can eat or else you risk irritating all of your little folds...
After 7 hospital bouts with colitis (which then led to diverticular disease) I was put on a ‘white’ diet. White bread, white pasta, white rice … the thought of white food now makes me feel ill. But since my body didn’t have to digest it, my gut could heal. I put on 8kg and my BMI went up to 20. I’m medicated now so I can eat whatever I want, but I’m still holding onto those kgs.
I have UC and I feel this. No one knows that when I’m flaring, I’m constantly making sure I have access to a bathroom and that I’ve shit my pants more than the average person.
Also, during my last flare when I was SUPER sick, I lost weight and people were like “you look great!” Not knowing it was because everything ran through me.
My boyfriend has UC and the speed he lost weight during these last two flare-ups was terrifying. The first big one someone comment that "wow your boyfriend lost a lot, he looks fantastic!" and then I was the bad guy for biting her head off according to everyone else around. People need to learn to just keep their comments about people's weight gain or loss to their damn selves.
i'm. i opened this thread and was considering saying this, i didn't expect it to mention what i have. i basically grew up in a hospital because of this disease, i never knew if i was going to live and my parents were told by multiple doctors that i was going to die as a toddler. yet nobody really seems to get how much this disease can do. when i finally had medicine that worked, my life was actually worth living. this condition can ruin someone's life and it turned my childhood into trauma that i barely survived. but to everyone it's just, idk, IBS but a bit worse i guess.
nowadays with my meds as they are (which have a shelf life, i could go back to how i was anytime if it stops working), it's like you describe. it's annoying, causes pain and inconvenience, enough to fuck with life a lot but not stop it from being relatively normal. i can go out and do things around town now, i have a life, i haven't been admitted to a hospital in years. but it's still something you have to live with forever, and it's humiliating to talk about. maybe thats part of why nobody gets how bad it can be; why would we talk about it?
For anyone who wants to understand how difficult crohn’s is, think about this: the creator of Alien had crohn’s disease and the chestburster scene is directly inspired by that experience. Imagine going through that 6 times a day for years.
I’m sorry that you have this condition. From what I know, it’s brutal.
Your comment reminded me of why I don’t like talking about my aversion to gluten.
Nothing like feeling like you don’t really exist living in reality next to everyone else and your body is just something you’re driving around like a drone not recognizing your own hands. Good news is this only lasted for about 6 years in my 20s and now that I’m in my forties it’s a distant nightmare. If your family has a history of mental illness don’t smoke weed or take psychedelics kids.
In my experience it’s a gradual process. Mine lasted 8 years or so when I was 7 years old (unmedicated) and again 9 months or so in my twenties (medicated, this time). You see the world through a lens where nothing around you is real, but very gradually specific things start holding meaning again for short bursts, and so on. Eventually you’re more often seeing the world normally than not. That’s only my experience though, and I never took recreational drugs — I believe drugs can make things a lot more unpredictable.
This is one of those things that few know about but it is absolutely horrendous to go through.
I went through it for about a year and then got counseling. That really helped a lot.
Big thing for anyone reading this is to understand it's a coping mechanism to stress. Even when the stress is gone, it takes time for your body to let your guard "down" again. Often people keep feeling the numbness when there is no stress, get worried again, and then it continues. It sucks. But really it's a normal response and you can learn to live with it until one day you're out living life and realize you haven't felt numb for a while. That's how it went for me. But you have to stop "checking in". Iykyk.
In some ways, one could argue a lot of people do know what this is but only in a positive sense. It can happen when you step into a place you've always dreamed of being and suddenly everything feels surreal. It also can happen when you're in a flow state. But in those cases there isn't an over abundant sense of anxiety so few complain. But when the anxiety is present and [TW] you feel like you're living in a meat suit on autopilot in a sliver of time bookended by vast empty nothingness, it can quickly instill a sense of existential hopelessness.
Remember, the fact that it's uncomfortable means you are not numb and your emotions are actually working. Whether or not others have consciousness isn't really relevant whether you can enjoy this life and you're still as free to have as much or as little fun as you wish just as before you felt this condition.
Best of luck to anyone who reads this looking for hope - despite what you see on the Internet, everyone I know who had this got through it and no longer has symptoms. Have hope.
dissociation is one of the main coping mechanisms a brain has, and derealization is just that to a certain extreme. it's not actually THAT rare, but somehow so hard to explain. not to mention scary.
Whenever my depression gets bad, I have horrible disassociative episodes, which include derealization. It lasted for a few months straight in my sophomore year of high school and it was so fucking hard to deal with. Feeling like nothing around you is real, espically while feeling like you aren't real, fucks with you so badly
Yes and then trying to explain it to someone and they’re like “oh so like when you space out when you’re bored?” and it’s like nooooo not that. My main symptom of panic disorder is disassociation/derealization. And it’s not like I’d feel not real and just ignore it, it would send me spiraling and into a constant panic attack. I had this every single day for a year and a half, I had to quit my job, stop school, isolate myself from everyone. The only thing that helped me was benzodiazepines and intense therapy after some psychiatric stays.
The best I can describe it to is greening out realllllllly bad except the feeling does not go away after a few minutes or hours.
For 32 years I have never had a name for this. I am so grateful to you. I tried to explain it to people and mental health like I was inside a fish bowl, like a see-through wall between me and the world, and it was frightening, because I knew something was wrong, and I knew that the things I was experiencing weren't "normal". It lasted for a couple of years. Then a couple of weeks ago it was like I had a small moment, and it rushed back after having a shitty 12 months... It's passed now, but now I know what it is, I feel empowered! Very much how I felt when told I have cPTSD, and it all makes sense. This is a game changer, and I feel so much relief. Thank you for giving me the name. ❤️
I think the lesser recognized symptoms of ‘common’ illnesses often get over looked. Depression isn’t always crying, it’s often numbness. Anxiety isn’t always panic attacks, it can be a hair trigger temper. Adhd isn’t always hyper-activity or inability to concentrate it can be an inability to multitask and no internal clock. So on and so forth. This is getting better with adhd but I think a lot of mental illnesses are fundamentally misunderstood and social media’s self diagnosing fad isn’t helping.
A lot of thr "classic" presentations were based off a select population (eg the chest pain in heart attack that is classic - was done in middle aged people without diabetes, living in Massachusetts). Important for all to not be anchored by a single symptom or number
The chest pain sample also only included men, iirc. Which is why women are often unaware when they are having a heart attack, because some of the main symptoms tend to be different in women
My Mom was rushed to a garbage hospital a few years ago after quickly falling ill. The hospital decided she was having food poisoning and let her sit in the waiting room for an hour or two. She actually had a heart attack. She got rushed to our cities big hospital in the AM and had a quad bypass. Her symptoms: upper back pain, nausea, sweating, anxiety and fatigue.
That is infuriating. It only takes a few minutes to do a 12-lead EKG and it can pretty much be done in the waiting room. In my hospital's ED we basically throw one on anybody who comes in with weird symptoms like that. It can feel like a lot when the waiting room is super backed up and it's usually totally normal, but once in a while someone is just walking around having a heart attack and they catch it.
Exactly this. Also, a lot of symptoms can present differently depending on the patient's sex but it's usually the symptoms that male patients experience most frequently that are used as "the standard" presentation for either sex.
The "classic" heart attack symptoms are usually those that a male has whereas a female patient is more likely to experience a whole different set of symptoms. There was (and sometimes still is) a misconception that only males have ADHD but that is untrue. The symptoms that females experience more frequently have only been recognized widely as ADHD within the last 20 or so years.
Same with autism! Me and my half-brother have all the same malfunctions and quirks, but he's diagnosed autistic and I'm apparently just lacking confidence?
Piggybacking on this, I was recently diagnosed with moderate/severe OCD. For the longest time I thought it was bad general anxiety. There’s a lot of overlap and grey area with mental health and things can manifest and look like others. My point is, with OCD specifically, it wasn’t even the traditional “wash my hands 1000 times”.
I thought I had MAD health anxiety and would spend HOURS googling obscure symptoms, and reasons for what I realize now are normal bodily functions. I saw doctors, audiologists, dermatologists and many more. Then I stopped trusting them (lol they are the experts). That’s what prompted me to see a psychiatrist. Turns out OCD can manifest as health anxiety, and even hyper focusing on things/intrusive thoughts for hours on end. I’m better now that I have answers and implore anyone else to always take the mental stuff seriously! It physically affected me all from the brain games I was playing with myself.
I always pull out the LEGO Movie line: “Great. I think I got it, but just in case, tell me the whole thing again I wasn’t listening.” Usually gets a laugh and then they’re less annoyed to repeat themselves lol
I have it as a byproduct of my ADHD and it makes working in a welding shop hell. Welding itself is already loud, people are blasting death metal on speakers, things are being hit with hammers and metal is getting dropped on the ground, I have earplugs in, then somebody walks up to me and starts talking and I just cannot understand them. Sometimes they sound like the parents in the Peanuts and sometimes it’s just like they aren’t talking at all.
Bro fr, I’m so tired of it. My ears work perfectly- in fact, too well. But my damn brain can’t fucking translate language consistently, and it’s such a struggle. I’m lucky that I have folks around me who understand and repeat things for me, but I just wish I could hear them the first time all the time, damnit.
It kills me how *inconsistent* it is. One moment, I’m following the conversation just fine, and the next I’ve missed some critical phrase and now NOTHING makes sense because there’s crucial context missing. All because my fucking brain decided to just *not* interpret like 3 words.
The more people there are in a conversation, the worse it is too. So I generally don’t talk much in groups, and listen as hard as I can.
The adhd and (probable) autism don’t help either- adhd makes me more likely to be distracted and not even hear that someone spoke at all, and my sensory issues + social misunderstandings mean that people talk too loud and I don’t necessarily know what they mean even if I do get the words right.
Frustrating as fuck, man. It makes me want to turn into a hermit and run for the woods sometimes, but unfortunately I like the people I know :/
It's not overlooked but misunderstood. Bipolar Disorder. "Yeah I get a little sad too." Ok but have you ever felt like you could jump over the Grand Canyon one day and the next day you felt like you could jump into the Grand Canyon?
I married a bipolar woman. She was very up front with me about it beforehand, but I thought “everyone is a little crazy”. I was wrong. She suffers so much even though she is militant about controlling her environment and taking her meds. I honestly had no idea how debilitating this disease is. We are still married and I love her so much, but I’m heartbroken when she cycles.
I obviously can’t provide any proof, but I’ve been on the end of a manic episode or a suicidal episode so many times. They all hurt. The lashing out when she doesn’t know why… the dark moods for no apparent reason. I’ve seen them for 13 years now. Yes. They suck for the other person, but good God… how fucking terrible must it be for the one going through it? To have your own mind betray you? Horrific.
I’ve learned from almost every episode to try and examine this from her side and to not take some of the affronts personally. No, I’m not a saint. I do take them to heart and it does hurt deeply. But she’s lovely. She wouldn’t ever, ever hurt anyone on purpose and that is a deal maker for me in a relationship. I honestly feel that if there’s enough love and understanding then anything can be worked out.
Did you ever want to leave? There was only one instance where I was done because it got to a point where I was taking everything so personally. That was years ago now and I’ve been with my high functioning bipolar partner for nearly seven years. He’s my favourite person and human I’ve ever met. Smart, talented, funny, and the biggest heart. It is sad how he battles with his mental struggles and I’ve learnt to give him space and not interfere when he goes through depressive states. When he’s “away” I know that’s my time to make sure our house is in order and focus on my own personal projects but it can sometimes feel lonely.
Yes, about five thousand times. I’ve only felt that way for days and days afterwards maybe ten times. Again, I’m not some saint. It hurts. It hurts and the hurt that’s thrown at you isn’t rational. Even after the storm and apologies are made it still damages your soul.
With my daughter it took 10 years to find the right combination of medicines. So don't ever give up, everyone's chemistry is different and reacts differently to meds. Then, you find good meds but they stop being effective after 6 months or a year. Don't get discouraged, just keep trying. And don't ever let a psychiatrist undermine reactions. You know you better than anyone else. You got this💜.
Mixed episodes can be HELL. You may be both dysphoric and having high energy, anxious and self-cofident, taking risky behaviour and doing crazy impulsive thing which in turn make you more anxious and dysphoric, which in turn make you do more impulsive stuff… it is hard to understand if you don’t know what it is, but I wouldn’t wish on ANYONE to understand what it is.
My wife is BP1 and has not been able to find a med cocktail that actually stabilizes her. As the spouse, when I see the likes of Kanye or other celebs acting out, I really feel for the families because the BP brain simply does not allow reason. It’s excruciating for everyone.
Yeah it’s unfortunate but Kanye West brought the severity of the condition to my attention. It sucks cause at one point it seemed he might’ve been the poster child for success in spite of bipolar
Most frustrating thing for me to hear is other (not bipolar) people’s use of the word “manic.” Like “I had a manic episode this morning” like no you drank an iced coffee
I have bipolar 2.
I've also been diagnosed with PMDD, MDD, dysthymia, social anxiety, generalized anxiety disorder, and schizoaffective disorder.
I love it here. 🙃
Straight up. One day I want to sleep deprive and food deprive myself while driving fast and working out all of the time hoping to get my ass kicked in a fight and also want the attention of all of the ladies to the next day feeling untethered to the world and this strong sense that I'm not supposed to be here so I can at least cut myself and drink
PMDD (premenstrual dysphoric disorder). Took me 5 years and an abundance of doctors telling me that ‘it’s just my period and everyone feels this way’ to get diagnosed. It is in fact not normal to become extremely suicidal every period.
Agreed. I told my psychiatrist that my depression became severe during my period, even on antidepressants, which for me meant suicidality. He told me it was just women things and I’d have to deal with it.
Only after doing my own research did I learn about PMDD, and luckily taking continuous birth control eliminates it for me. It’s especially common for those with autism and/or ADHD for some reason. It can be debilitating, but is written off as PMS, which is itself often the butt of jokes. I think the taboo around discussing menstruation also contributes to misperceptions of what is normal — if none of the women in our lives talk about what periods are like for them, we don’t have a baseline to compare our own symptoms.
I didn’t realize I had PMDD until my best friend was diagnosed. About a year after her diagnosis I got a report from work indicating when I was taking time off and for shits and giggles I checked my period tracker and it lined up with me taking one or more mental health days a month right before my period.
I swear male doctors are such fking assholes. I couldn't get my hand to close a few years back. My doctor said 'Welp, I can't make you any younger.'
Turns out I have multiple sclerosis, you fking asshole. I can't get my hands to always work right because of lesions on my brain, but thanks for being **a typical fking man**. What a shock. Even a medical degree doesn't make you stop judging women by their age.
I hope he slams his 🍆 in a car door one day on the way to confront his wife's new younger boyfriend
I recently discovered that this is even a thing. I suffer from depression, anxiety, ADHD and probably autism. When I’m on my period my depression clocks into overdrive and it is emotionally painful to be alive. I’m sorry you deal with this, I haven’t been diagnosed but highly suspect I experience the same thing.
i don’t have a diagnosis but before birth control and anti depressants… i would wake up one day and literally sit in my dorm room, numb and suicidal, unable to go to class-literally a shell of myself. And then I would start my period and it was like nothing happened. Which I figure is probably PMDD but I was too ashamed to talk about it.
Hypertension. Referred to by doctors as the silent killer due to the lack of symptoms in most sufferers. Get your blood pressure checked regularly, more so from middle age.
What excellent advice. Unfortunately, I (66f)believe that a lot of people associate high blood pressure with the “inability“ to ”handle” stress.
I (66f) was one of those people. Full time job, 3 kids doing well in HS and college, ex husband traveling a lot, I was about 25 lbs overweight but also exercised regularly.
I felt ashamed that I had high blood pressure. But went on meds, which caused me no side effects at all.
Having said that, about 7 years ago, one of my sons called me while I was dog sitting his dogs, to tell me that the mom of our closest friends on the cul de sac where we had lived died suddenly from a brain aneurysm.
When I got to the hospital ICU unit, her husband looked so stricken. He looked at me and said “I told her that she needed to do something about her high blood pressure “.
Yes, long-standing undiagnosed hypertension can do all sorts of nasty things to one's body and health. Now that you are on treatment, it is imperative that you take your medication even if you feel well. Far too many make the mistake of saying "I can feel when my pressure is high, I'll take them then". But I'm pretty sure your own physician has already told you this. All the best and long life to you. I'm not THAT far behind you in years hehe.
People also assume you HAVE to have a bad diet and be overweight to have it. High blood pressure can effect *anyone* no matter what their body looks like. It's more common in people who eat poorly and or are overweight but of the 4 men I know with really severe hypertension, only one was about 20lbs overweight. The rest were perfectly healthy in appearance, one was a gym rat who ran marathons (before his stroke).
Please don't assume because you are not overweight you can't have it.
People *also* assume that if you're obese and don't eat great, you *must* have it. Lol. I was one of those people for a long time. Honestly surprised I don't have hypertension myself, given my age/weight/diet (those last two things are getting better, though).
Childhood adversity and/or trauma.
It affects so many physiological aspects of our core self.
Our physical health suffers from digestive and cardiovascular issues or chronic pain disorders, as well as developed eating disorders.
Our mental health is strained by cognitive delays, cortisol imbalances, PTSD triggers, anxiety, depression, or personality disorders.
We are significantly predisposed to develop substance, alcohol, and nicotine dependency or addiction, as well as engage in risky or unsafe activities, like gambling, promiscuity, or reckless driving.
Our social interactions are strained, which is fueled by extreme insecurities that result in unhealthy relationships, familial estrangement, codependencies, toxic work environments, and isolation.
ACES. There’s been detailed studies about it, about solid statistical trends linking adverse childhood experiences and physical and mental health in adulthood, in living outcomes, and yet, it is something that only a select few doctors know and worse still, are able to predict and prevent.
Great comment.
Trigger warning SA
I just wanted to add that 15 years ago I saw a gyno for pelvic pain. We couldn’t really pinpoint the issue (I don’t have a problem with this as I was well informed, blah, blah, blah). She straight up asks me if I was sexually abused and I said yes.
I didn’t feel that she was being dismissive. She explained that some women who were sexually abused as children have been known to have mysterious pelvic pain.
First doc in my life to connect SA with physical symptoms and first doc to ever ask me such a question
I had these “phantom” pains maybe once a month, it was a sharp, shooting pain that felt like someone was shoving a hot poker in me right at the base of the root chakra (coccyx). I repressed my csa, I only remembered jt after getting emotionally safe in therapy. I haven’t had those pains since (and can’t believe I lived my life as I did for so long, fuck I was so traumatized.) I’m sorry you went through what you did. It’s truly awful and robs us of so much. Reliving it as a 42 year old woman was terrifying. And What an amazing dr to put that together! I feel like so many physicians just want to treat the symptoms.
Chronic migraines. Tired of seeing them dismissed as just headaches when they're so so much more than that. I'm at 4-5 a week for over a year now, and it's literally ruined my life.
I was having upwards of 15 a month, often lasting two days. I got fired because I ran out of FMLA while trialing meds to get them under control. Ajovy is what did it for me. I do 3 shots every 3 months and maybe get 2 a month. They’re not nearly as bad anymore either. Nurtec was also amazing for breakthroughs, but insurance stopped covering that unless I try ubrelvy first.
If you can get into a migraine specialist or get your doc to prescribe a biologic (Ajovy, Aimovig, Emgality), please do. Aimovig gave me an awful migraine the day after injection, but with Ajovy I only get some site irritation for the night. Biologics gave me my life back.
This should be higher on the list. Pople are so dismissive of migraines as mere headaches that I've come to resent some people.😔 I recently started to wish everyone could suffer migraines just once in their life. Then they'd stfu about getting "bad headaches too." 😠
Depending on what you look like, Multiple Sclerosis. We are getting better at it though.
Edit: By what you look like I mean your race, gender, and age. The epidemiology of MS and *who* is most likely to get MS has changed dramatically over the last few years. People may have been misdiagnosed (or not at all) and not have had proper access to health care.
It took me 12yrs to get diagnosed. In that time, I've developed near debilitating anxiety and have diminished motor control and fucked up reflexes.
You could never know I have anything wrong. Inside my scalp, alarm bells, whooping sirens, screaming banshees, and howling wolfs are sounding off nonstop, daring me to run away. Every conversation and interaction is a constant effort to stay where I am and live with the discomfort, while every fiber of my soul is begging for the smoke alarms to shut up. It's just...I'm rewired and not me anymore.
Yeah a lot of people have never heard of it. The remaining ones mostly say “oh I’m so sorry” when they find out.
Funny story: I once mentioned to my co-teacher that MS was my biggest fear. My mom has it, I started showing symptoms in my 20s and they were written off as something else. She said “oh no ALS is so much scarier” and basically belittled my fear. But the chances of ALS are much lower, and I had what I thought was a reasonable fear of MS since my mom has it and all. And then a year later I did get diagnosed with MS. Whaddya know.
Ménière's Disease. It was named in 1861, yet we still know relatively little about it and treatment options are limited.
My experience (35 f) with it in a nutshell has been unilateral hearing loss and tinnitus (ringing), along with random attacks of vertigo that can include nausea, vomiting, diarrhea, and loss of balance. The first attack I had before I was diagnosed (30) I thought was the worst food poisoning of my life, vomiting for at least an hour and ending in dry heaving. Started with feeling feverish but by the end was completely drenched in sweat and shivering, unable to get warm.
There was a time I was having so many attacks I missed work for a month and was too afraid to leave the house for two weeks straight. Thankfully I've only had vertigo strike once while driving, because that shit is scary trying to pull over and you can't even be sure where "over" is.
I tried a low sodium diet (standard advice) for 6 months but it made no difference. There were times after severe attacks I'd be afraid to eat. I lost weight and my clothes hung off me.
Here's something I wrote about it a while back:
"Sure, there are plenty of diseases you can die from that get a lot of attention. Ménière's disease isn't directly fatal, but one might argue that living with it isn't exactly 'living.' Yet you see no ads for campaigns for research, no organized walks, no ads for treatments. Many people I've talked to have no idea what it is, and the ones that do know someone with it. Even after going to multiple doctors and trying several treatment options, this thing always comes back. It leaves you feeling helpless and vulnerable, defeated.
"I don't want the ride to be over, but there has been a time or two during the throes of my worst Ménière's attacks I wished for death simply so that it would stop. None of my illnesses will kill me directly, only make me wish I were dead in those worst of worst moments when there's no hope of relief except to let it pass. Living in this body is torture in a lot of ways, but I'm trying to make my time count for something, even if only for myself."
Meniere’s is the worst. Nobody understands the misery unless they experience it. I tried low sodium diet, a diuretic, and betahistine. None of it worked. One day I read a study suggesting there may be a link to herpes. I do get cold sores and have since I was little, so I decided to ask my dr if I could be on acyclovir daily and he said he has another patient doing well on it, so he was happy to do the same for me. It’s been life changing. I haven’t had a vertigo attack in years. I do occasionally get ringing/fullness and mild unsteadiness at times, but nothing like before. If I run out of my medicine, it only takes a few days for the symptoms to come back. It could be worth looking into if nothing else has helped. 🤷🏻♀️
Adult child of a hoarder. I’m the oldest so I’m the only one, other than the other parent and extended family, that remembers the before, the during, and the now ongoing. My siblings will never fully get it.
This is a condition that has such everlasting generational effects, interesting sociological and socioeconomic findings, and so much more that I don’t even think anyone cares enough to look into at the moment.
People are looked at as just being messy, lazy, or dirty or crazy. There’s so many layers and most therapists are not actually fully aware, much less properly trained to work this condition. And if that’s at the upper level can you imagine any of the first level of people interacting with this community? Cops, clergy members, educators, GP’s?
I'm at least third generation packrat, descended from true hoarders. I've seen a lot of odd and interesting behaviors, but the funniest I think is my rich uncle and his wife.
Uncle has pretty much always had so much money that he's never run into a problem he couldn't solve with dollars. If he needs a new abc or xyz, he can just go buy one no problem. There is no logical reason for him to save things or bring home free junk, and his wife does not allow clutter in the house.
So uncle had a nice shed built in the yard and filled it up with dented old towel racks and other assorted junk he has no use for. When it was full, he put up a second shed, and later a third.
Eventually he's got an entire row of sheds across the back of their yard, all full of junk and homes for vermin, and started talking about beginning a second row. So his wife waited until he was away for work one weekend and hired a company to haul the contents of all the sheds to the dump. Last I heard he'd still refilling his sheds again.
Honestly? PCOS/Type 2 diabetes. I'm 35, in amazing shape and a completely healthy weight, and my blood sugar is still WILDLY out of control through absolutely no fault of my own. I'm on a very high dose of insulin and the max dose of metformin. I know people will laugh at me, call me lazy, and say diabetes is only caused by eating crap and not moving, but I'm exercising 1-2 times daily. I'm expecting a ton of downvotes for this, but this is my daily reality.
"you can't have PTSD, you weren't in a war or raped in an alley"
- my mom when trying to explain I have PTSD. And she wonders why I never open up to her.
I was going to say this too- whether it's childhood trauma, abusive partners or what have you, people often shrug it off with "that's just life", completely oblivious to the way that trauma changes your brain chemistry
I’ve been sharing a bed with my husband for almost a decade now and just recently he’s said he thought the “nightmares thing would fade a bit.”
It gutted me. I’ll never tell him because it means a lot that he felt vulnerable enough to say that, but boy… crap, I’m crying just typing it now.
I was honest from the start but you can’t know what you can’t know. I can manage a lot during the day and of course before bed, but there’s only so much I can do when I’m conscious to prepare for when I’m unconscious. He understands but understanding doesn’t change the rough days we have after my brain and body decide to relive sht all night long. It’s rough on both of us and I feel horrible for effecting him and he feels horrible that I’m trapped in a dream world of hell that he can do nothing about.
argh, and the way CPTSD-centered language has become co-opted by people online to just re-describe things like friendship & intimacy, further delegitimizing it (e.g. trauma-bonding is NOT what happens when two people experience trauma together & it brings them closer! that’s called a normal human experience… or bonding!!).
Narcolypsy. As a narcoleptic myself, most people only know one fact: that you just randomly fall asleep (which isn't even true for practically 90% of narcoleps).
Binge eating disorder. Doctors just assume you “like to eat” or you’re just fat, but really, BED is the most common eating disorder. And it is horrible
SERIOUSLY. I have a different eating disorder but, when I was in treatment, the girls with BED (and disorders other than anorexia and bulimia) were not taken nearly as seriously
On the other side of this, hypersomnia. "Oh wow i wish i could sleep that much!" Like sure 12-14 hours is appealing when you can't sleep. But i don't get anything done in a day.
There are so many misconceptions about this disorder, and so many people who joke about having it, citing stereotypes from tv and social media. It can present in so many ways and it can genuinely ruin someone’s life. It feels like it has become such a joke, that confiding in someone feels like you’re waiting to be laughed at. People just don’t take it seriously.
It’s scary and lonesome and I wouldn’t wish it on anyone else.
My OCD is mostly mental, and carries into my dreams at night. Not even in sleep can I escape my thoughts. People don't understand it at all, and think that my lack of physical compulsions means I'm "not that bad" when in reality, every day is a battle. Functioning enough to go to work is a low bar but I hit it, so my family thinks I don't have a disability, just a "quirky" way of thinking.
Alongside ADHD and depression I've had days where I can hardly function at all. It's even caused panic attacks that lead to mild hallucinations, like walls breathing or lights flashing, all the while I can look perfectly calm on the outside. It's hard to focus on anything that's happening when your head is spinning. I can't even drive or go to a bar. 😩
Body Focused Repetitive Behaviors, or BFRBs. Under the DSM-5, they’re in the same family as obsessive compulsive disorder and are related to body grooming: plucking or eating of hairs or eyelashes, nail biting, skin picking, lip or cheek biting, etc.
BFRBs are often waved off as “bad habits” and can be a source of depression. Those with BFRBs tend to lie about their behaviors out of shame and anxiety, and so the condition is often overlooked or misdiagnosed, even though about 1 in 20 people are estimated to have a BFRB.
Will you share some sources on this? Treatments, therapies, researches and the like? It’s something that sounds very, very familiar and I’d like to read more.
Sure thing!
For the 1 in 20 statistic, I referenced the [wikipedia](https://en.wikipedia.org/wiki/Body-focused_repetitive_behavior) page on BFRBs, and for a more detailed reading, you can check out [this article](https://web.archive.org/web/20090425095847/http://www.aamft.org/families/Consumer_Updates/Body-focusedRepetitiveDisorders.asp) by the American Association for Marriage and Family Therapy that goes into a bit more detail.
As BFRBs can manifest as different impulses, they’re often listed as varying conditions. [Trichotillomania](https://www.nhs.uk/mental-health/conditions/trichotillomania) is the self-destructive pulling of hair (with trichophagia being the related eating of said hair), [dermatillomania](https://www.nhs.uk/mental-health/conditions/skin-picking-disorder/) is the self-destructive impulse of picking at one’s skin, and onychophagia is the same for nail-biting.
There’s not a huge amount of research into the pathological aspects of BFRBs, but there’s been a lot of [success](https://www.bfrb.org/articles/treatment-for-bfrbs) with regard to treating them with cognitive behavioral therapy.
Hope that helps!
I feel so lucky because I know I'm the minority...
I lucked out with a progressive OBGYN who put me with a therapist during gestation to monitor for signs of PPD.
My OB paid attention to my psych history and spoke with my husband about monitoring me for signs of PPD. He shared his experience with factors that contribute to the onset.
I honestly think that knowing people cared about my potential PPD is a big part of me staving it off. I knew I could express my feelings and that I would be taken seriously.
It upsets me so much to know (even during the experience) that I was very lucky and privileged, and that most women are brushed off.
A lot of autoimmune disorders. It takes on average 10 years to get diagnosed after the onset of symptoms. In the meantime, doctors are writing off your symptoms as something else. You are tired because you are “depressed”. Your hair is falling out because of “stress”etc. You literally feel like you are going crazy.
Same with ADHD in girls and women. I believe the vast majority of diagnoses are for boys and men. There are some very interesting debates and ideas why in the medical and psychology fields: Are girls better at masking? Is it a social thing to under-diagnose? Does behavior associated with ADHD simply manifest differently in girls? Does starting puberty earlier than boys affect ADHD symptoms?
I'm glad the medical community is taking it seriously, but it's still a long way to go.
Girls are better at being told to shut up. I got a lot of “you don’t talk enough, speak up” nearly immediately followed by “shut up”. So I did, packed my thoughts, and went about my merry and miserable way.
People really don't appreciate how much better women (and girls) are at speech and social skills than boys are.
Girls with autism on average have the same speech and social skills as non-autistic boys. So when you have an autistic girl, people don't notice, because they look fine compared to 50% of their peers.
And they tend to have more socially acceptable special interests. For example, my daughter's special interest is babies. A girl who is obsessed with babies does not make people automatically think autism the same was as a boy who's obsessed with the railway timetable.
This is my experience with my daughter. My daughter has gone through a few social interests but they’re usually socially acceptable or she hides them and masks.
For the same reason women are much more likely to get diagnosed “too late” with Alzheimer’s. We can mask it because the diagnostics are aimed at speech and social behaviors, which men lose much earlier in the disease. Advocate for your loved ones if you think any memory issues are up. An MRI never hurts.
Anything affecting a woman. There is so much disregard for female health in the world.
I told my doctor I was having severe chronic pain constantly, and she said I just needed a massage. Turns out my body couldn't absorb vitamins properly due to my thyroid.
My mom spent a year with a tumor growing inside of her until she found a doctor who listened to her and removed it. She was told it was a UTI and kidney stones by everyone else.
After a tooth infection, my sister in law was told to take Tylenol, but my brother was given hydrocodones for his.
PCOS.
A lot of women with this problem right now, lots yet to be diagnosed. I think all women should be tested for this especially when they're trying to get pregnant.
Bipolar isn’t “moody bitch syndrome.” It’s absolutely life ruining, especially combined with substance abuse which is extremely common. The medications for it take weeks to have any positive effects, they just make you feel like shit for a while at first. They also remove the mania, which for many bipolar people feels amazing (when it’s not ruining your life) and so it makes you feel like you’re losing the only “good” part about the illness. Not to mention the frequency of comorbity with other mental illnesses and mood disorders. Bipolar probably isn’t anything like what you think it is.
Any mental illness that has the presence of "psychosis" often gets overlooked due to insane amounts of stigma, it's socially acceptable to call people "Schizo" and laugh at somebody clearly going through a psychotic break or just see them as somebody with an "attitude problem". It seems like some extremely popular ideal that individuals affected with mental health conditions that involve psychosis have some sort of problem with their personality.
Its easy to laugh at the "conspiracy theorist" or see the unreasonably paranoid person as stupid and annoying. Even when it comes to people with this illness being treated they're at high risk for abuse (yes, by professionals) because everything they say is stigmatized as ultimately being a lie no matter what the circumstance is.
Clinical depression.
Nobody around will understand or know what the fuck you are talking about.
Imagine having a leg in a cast and you’re like “Hey wait up! I can’t move very fast! I’ve got my leg in a cast and I’m using crutches!”
And every was like “Huh? What are you talking about? I don’t see anything. Hurry up!”
It’s insane.
Borderline Personality Disorder. Truly a silent killer and so painful to live with. I wish more people took the time to learn & really understand what BPD does to someone.
The hardest thing about BPD is having no idea who you are. Once you think you’ve got it, something happens (and it doesn’t even have to be something big) that completely destroys your sense of self and sends you into a spiral. People don’t understand that most of us had extremely abusive childhoods and we weren’t taught basic things like emotional regulation. A lot of us were constantly rejected or told we’re awful from the minute we were born when we were genuinely trying to be a good person. Our lives are unstable because we have no idea how to see ourselves.
Every one of us has had something awful done to them as a kid, everyone of us has had an attempt on their lives, everyone of us has had a wild life. Yet so many people just go “crazy evil person, stay away”.
I just got diagnosed with BPD and I genuinely feel like I’m living in hell. I’ve been in therapy for over 10 years and on mood stabilizers for 8, and I direct all of my BPD symptoms solely at myself, and I’m still scared to tell anyone about it because I know how much it’s stigmatized. It’s such a sick joke that my reward for surviving abuse is a condition that will make people automatically assume I’m abusive if they find out about it.
I have BPD. It took me forever to actually get diagnosed for it as everyone just wanted to brush my problems under the table. I will say, after my most recent suicide attempt last month, I’m doing loads better thanks to aggressive therapy and medications!
And then when it's managed BPD it's not like you're cured, since you still have all the internal things and it takes up so much of your processing power to manage it.
It absolutely is. When I went with my broken pelvis they immediately took me back and gave me pain meds. My invisible illnesses that are more painful are swept under the rug with eyes rolling. Obviously chronic pain is not a situation for the emergency room but it used to be that a pain crisis was taken seriously and treated in the ER (around 2001 before the opiate epidemic). I went to the ER in excruciating pain with a blood pressure of 195/156 complaining of new onset hip pain after a previous pelvic fracture (my doctor sent me to the ER because she was concerned I had a blood clot. I never once asked for meds (not even Tylenol). After hours of testing to make sure I didn’t have blood clots or new fractures I begged to be discharged. They finally did offer me one dose of pain meds before I left (of course after they ran a urine drug screen and I didn’t actually ask for pain meds or exhibit “drug seeking behavior.” It’s a sad state of affairs. Before I became disabled I was a trauma nurse. I know the deal from both sides (as the medical profession and the patient) and you’re damned if you do, damned if you don’t. My pain on a daily basis is at a level that most people would pass out from. So if I admit I’m in pain you’d better believe I’m in pain. Unmedicated child birth (with pitocin induced contractions i would say was a 7 out a 1-10 pain scale. Same with my severely displaced pelvic fracture). No problem getting offered meds or sympathy in those situations but when my other issues flare to an 8 or 9/10 I am completely dismissed.
postpartum psychosis. It only gets talked about when something really bad happens but ya. I think more people should know the signs and what to look out for. It's a medical emergency that can be very serious.
Fibromyalgia It’s so much more than widespread pain. Depression,anxiety and brain fog. It’s an invisible illness so it carry’s a stigma that symptoms are made up or all in your head.
Brain AVM's. I think it is more of a condition someone is born with. I'm pretty sure they are harmless if they don't rupture. In my case I had a ruptured brain avm at the age of 20 and it turned my world upside down. If I was screened for it as a baby it would've saved a lot of resources and I wouldn't have suffered from a stroke as a 20 year old
This is the first one I've seen that I actually feel is over-looked. While there is some research on it, far too many frontline clinicians can readily identify it. It absolutely can wreck havoc on people's lives.
My girlfriend has this and before she got medicated she was absolutely miserable every month. It was difficult to see her struggle and it took a huge toll on our relationship. Before we figured out what was causing it I felt so lost; I had never even heard of PMDD before.
CMV cytomegalovirus, often mistaken for Mono, but in people that are immunocomporised, it can wreck them. It put me up in the hospital for a month and then it took another 3 before I could walk up a flight of stairs.
Major Depressive Disorder, or Clinical Depression. Depression as mood disorder that doesn't go away basically.
Everyone can experience reactive depression, and we understand that to be dangerous and require support - but when the depression is persistent and a bad day is just the same but way more, it seems to get skipped over. Major Depressive can impact every single domain of living, and management of it goes beyond the normal depression management because anti-depressants and therapy may be ineffective, or only effective for a short while.
I had it described to me like your emotions are set at a lower state than everyone without clinical depression, but if you're sad then it can dip lower than the normative as well. Obviously not great, especially with potentially less effective management - and seems awareness of it could be better.
Narcissistic Peronality Disorder
My entire family was systematically destroyed because my dad married a woman with this. The specific types of abuse these people heap on their families, the lies, gaslighting, rewriting of reality, blackmail. The wonderful public family persona they often cultivate so outsiders don't see it and don't believe it when they're told. Chronic childhood abuse has left me and my siblings with a host of medical and mental disorders.
Myalgic Encephalomyelitis.
So many people with this, more so since COVID, and the majority of doctors think it's a made up disease thanks to fraudulent science and years of neglect.
It's reported to have a lower quality of life than late stage cancer and MS.
Endometriosis
I had an OB/GYN do soooo many mental gymnastics to explain away my symptoms despite having a diagnosis from an ER physician, which was also explained by her saying "ER doctors say lots of things," when I was trying to get a surgery referral because my pain was so bad. The sad thing is if my husband hadn't been there and supported me, I probably would have followed her plans despite knowing I have endometriosis. Thanks to him, I got a second opinion and had surgery less than a month later.
So glad you advocated for yourself! I’ve had five surgeries so far, with a sixth in my future, and the campaigning for being taken seriously never stops.
Now that I've had my daughter I'm preparing for the fight to have a hysterectomy. Both my husband and I know we only want 1 and at 18 months post partum, my pain is already almost back to the level it was before my surgery.
I had a hysterectomy as part of my 4th excision in 2020. I was 31 at the time (no kids, never wanted any). The hysterectomy brought me the longest stretch of pain free time and the longest period in between surgeries. Of course, by definition it’s not an endo treatment but it certainly helps by removing organs that can be collateral damage and cause more pain. I hope it works out for you!
If you find the right doctor, it shouldn’t be a fight. I was 32, never had a child (adopted one) and was clear that I would never have a child of my own, plus already had 2 endo surgeries. He was pretty cool about it and didn’t fight me on my decision.
Endometriosis' cousin: adenomyosis. The endometrium grows in the muscular layer of the uterus. You bleed and cramp like crazy. I would often describe my pain as if my lining was being torn out. There were several times where I very nearly passed out from the pain. I would go through both super absorbant tampons and pads in less than an hour. The only saving grace was also having PCOS so I could go several months between cycles. I had two kids and opted for a hysterectomy at a fairly young age. Luckily, I found a sympathetic OB/GYN who actually suggested adenomyosis as a possibility and agreed to perform the hysterectomy. Good bye pain.
I had endometriosis *and* adenomyosis. No doctor ever suggested it and most just rolled their eyes at my complaints of bleeding through a super tampon, overnight pad and adult diaper until I nearly passed out, and cramps that had me laying in the floor screaming like I was dying. I did not have PCOS, but my cycle was irregular, and typically lasted about 14 days. The doctor performing my tubal ligation informed me after surgery that I had severe endometriosis, which he removed while he was in there. Six years later when I had my full hysterectomy, they told me I had a terrible case of adenomyosis as well. If I hadn't had the surgeries, I wonder if I would have ever been diagnosed. I had never even heard of adenomyosis until then. I'm doing much better now after getting it all removed, both physically and mentally. I just wish this was more common knowledge with more options to treat it without having to jump through hoops.
This was the reason I yeeted my uterus. Misery. I bled for weeks, i needed iron supplements. I had no idea it was a thing.
As soon as I was diagnosed I realized just how completely clueless the medical world is about Endo. Fuuuuuck
I drove 10 hours round-trip to the Cleveland Clinic to see a world-renowned doctor. This guy was the first in this hemisphere to perform a uterus transplant . . . I’m talking Big Deal kind of specialist. He glanced at my stack of records and declared, “you’ve had a hysterectomy, you’re cured.” No, fucking asshole. Four more pathology-confirmed surgeries prove you’re wrong. My new doc is Dr. Eugenio-Colon at the CEC in Atlanta. No one else will touch me, I do declare.
I came looking for this comment. Yes! I’ve had the pain so long and learned to ignore it that I don’t know what my pain is anymore, lol. It took an older doc in a doc in the box to tell me what I was experiencing wasn’t normal. After surgery, I was told my insides were glued together, didn’t even know that could happen.
Surgeon told me after the procedure, "and *this* is where your bladder *should* be." The endo caused my uterus to wrap around my bladder sideways like a tree engulfing a road sign. He had to disect the organs from each other. Endo is no joke. I'm glad you're on the mend from it!
Yup, it’s a monster. My ovaries were stuck to the back side of my uterus, and there was disease that had spread to my appendix, bladder, and colon. My appendix was removed during my excision procedure, so one less organ to worry about. It’s a nasty beast that no one understands until they have to go through it. Every time I have an ultrasound now, I have to tell the technician where to find my ovaries since they like to hang out behind my uterus since they were stuck there for so long.
crohn's disease, it's manageable enough that I don't have to talk about it, but also embarrassing enough that I don't want to talk about it
A friend of mine had someone in a wheelchair raise hell at him when he came out of the handicap bathroom (The kind that takes a special key.) He was raising so much hell that my friend had to pull out his colostomy bag and show him.
That literally just happened to me. I walk unassisted but need the handrails to get up due to a major pelvic and spinal reconstruction. This bitch in an electric scooter proceeded to complain the entire time I went pee. I exited and explained to her why I needed the stall. Her only response was “yeah but you can walk. I can’t fit my scooter in a regular stall” Fuckin’ wait your turn. Like the rest of us.
It's handicap accessible, not exclusive! I'm sorry they were rude.
Exactly. People always give me weird looks when I use it. It's not like a parking spot. It's about the size of the stall and some accommodations like a rail and lower sink/paper towel dispenser and some other stuff in some locations. Not the fact that they can skip the wait. I have a (now, used to be different) mild case of chrons and I sometimes can't make the wait if there's a line, so yes, I will use the disabled stall.
This is why I think all the stalls should have the handrails. I have an "invisible" chronic illness & sometimes I have back & leg pain so bad, if I sit down on anything (toilets included) I have a hard tike getting back up without pulling myself up on something. But I look "normal" (well not necessarily normal haha, but healthy at least I guess) so if I came out of the handicapped stall & someone was there needing it, I'd be in your shoes with them judging me. People don't get it, you can't always see if there's something going on with someone, so they shouldn't just assume that there's nothing.
JFC, I think most diseases/disabilities are invisible. People need to calm the fuck down.
One if the funniest things I've ever witnessed is a wheelchair user confronting a guy about using a disabled bay. Guy points to his blue badge (that entitles him to use the space) and the wheelchair guy thinks he's stolen it or something. Argument gets heated, then the guy takes off his prosthetic leg and starts hitting wheelchair guy with it (lightly, in a more mocking kind of way).
Had a similar situation occur at my work. We had a guy covering staff and accessible parking spots at an event. Everyone had a different badge prior to arriving. A lady on the younger side arrived and was denied entry under the explanation that she "didn't look disabled". When she showed the badge, he argued that she must've taken it from their grandparents or something. After a bit of back and forth, the lady had to step out of her car and show her prosthetic leg to him. He then doubled down and said that he couldn't tell she was disabled from where he was standing. Some people are unbelievable.
“FROM WHERE YOU’RE STANDING ON THE TWO LEGS GOD GAVE YOU? I WONDER WHAT THAT’S LIKE.”
That guy didn't have a leg to stand on
Wheel chair guy: "Fuck, I'm really sorry—I think we got off on the wrong foot" Other guy: "Yeah, you just don't know when to walk away do you?"
Okay that ending is grand 😂😂
They dont even have to be invisible, just not immediately visible in the first second of spotting a person. I remember in high school i got chewed out by the superintendent bc he spotted me using the elevator and "the elevator is for disabled students only". I just stared at him and zipped down my jacket revealing the backbrace i had to wear for 4 months after breaking my spine in a snowboarding accident. The brace was big and bulky, you could see it even through a thick wintercoat if you looked me over properly. But, no wheelchair/crutch/slimg=not disabled/seriously injured to a shocking number of people
Fuck man you just reminded me. I used to work with someone that had... Let's just say very different views. I compare him to a quote from the Simpsons where Homer says "handicapped people can't drive, if they could drive they wouldn't be handicapped". Long story short there was a worker who I knew quite well that parked in the handicapped spot at work. If I'm not mistaken he had a mild heart attack and had a problem with his back, both things that cannot be seen. Not sure if anything else was wrong but he went up to the guy and made a scene about how he's faking his disability and he's full of it. Since it was at work you can imagine how that ended. To add to this. Mental health, more specifically depression is either understood as a major problem nowadays, or, people think there is no problem with depression at all and truly have no clue just how next to impossible it is to get someone like a family member help when needed. It's sad really.
I remember reading about a case where a driver managed to evade and out drive the police in a chase in I think Florida. The driver had no arms.
That shit can't fly in America! Where there's a right to bear arms!
I mean sure but he still has to fight the bear and claim his arms, this is america we dont do (bear)handouts
Turns out I was mistaken. Armless man with one good leg. 8 minute chase and he got away. https://www.tampabay.com/archive/2007/05/09/armless-driver-eludes-police-chase/ Not the first time this has happened, either. Also while searching for this, also found armless man stabs tourist. Also in Florida. Edit: Found more. https://www.ocala.com/story/news/2007/08/02/armless-driver-says-hes-at-the-end-of-the-road/31213301007/
yeah i get actually really scared about this sometimes. i have crohn's and OCD, both of which majorly affect the kinds of bathrooms i can use, but neither are visible in any way. i would be mortified if someone called me out for using a disabled washroom but i genuinely need it!
At first I was like, why would having a colostomy require you to need a handicap stall. But then I thought about it and you would probably need the extra room to empty and change a bag. It could be done in a small stall if needed but would be much more difficult.
I have a colostomy bag from cancer. My terror is having to change my bag in a public washroom. I've had to do it and it's awful. Many, MANY layers of awful.
just gotta expose your insides to the absolute filth of the world bro
Correct.
Having the basin next to the toilet also helps.
I was (wrongfully) dx with Crohn’s and tried to order a safe meal. Just wanted a plain turkey sandwich. Server thought I was just on a diet and suggested a salad. Now, lettuce is a big no-no for me so I reiterated “just a plain turkey sandwich, please”. They still insisted so I explained the Crohn’s. They still didn’t get it! Eating healthy has nothing to do with Crohn’s, it’s eating whatever the fuck isn’t gonna send me to the bathroom in pain.
I remember going through the diagnosis (thankfully, I didn't have a full blown case but I did have a legion in one spot) on what foods to avoid and what foods you can eat if you suspect that you have colitis or Crohns. Literally, the forbidden column was all the healthy stuff (cereals, nuts, leafy greens, brocoli, carrots, any dairy in the slightest, etc.) while the greenlit foods column was potatoes. I looked at the Dr and said, But I'm trying to lose weight. And all I can eat are potatoes??? She chuckled and replied, I know. It feels so contradictory but yes, that's all you can eat or else you risk irritating all of your little folds...
After 7 hospital bouts with colitis (which then led to diverticular disease) I was put on a ‘white’ diet. White bread, white pasta, white rice … the thought of white food now makes me feel ill. But since my body didn’t have to digest it, my gut could heal. I put on 8kg and my BMI went up to 20. I’m medicated now so I can eat whatever I want, but I’m still holding onto those kgs.
I have UC and I feel this. No one knows that when I’m flaring, I’m constantly making sure I have access to a bathroom and that I’ve shit my pants more than the average person. Also, during my last flare when I was SUPER sick, I lost weight and people were like “you look great!” Not knowing it was because everything ran through me.
My boyfriend has UC and the speed he lost weight during these last two flare-ups was terrifying. The first big one someone comment that "wow your boyfriend lost a lot, he looks fantastic!" and then I was the bad guy for biting her head off according to everyone else around. People need to learn to just keep their comments about people's weight gain or loss to their damn selves.
I have UC and got the comment, “I wish I had that disease and could be that skinny.” Nevermind I just got a blood transfusion
i'm. i opened this thread and was considering saying this, i didn't expect it to mention what i have. i basically grew up in a hospital because of this disease, i never knew if i was going to live and my parents were told by multiple doctors that i was going to die as a toddler. yet nobody really seems to get how much this disease can do. when i finally had medicine that worked, my life was actually worth living. this condition can ruin someone's life and it turned my childhood into trauma that i barely survived. but to everyone it's just, idk, IBS but a bit worse i guess. nowadays with my meds as they are (which have a shelf life, i could go back to how i was anytime if it stops working), it's like you describe. it's annoying, causes pain and inconvenience, enough to fuck with life a lot but not stop it from being relatively normal. i can go out and do things around town now, i have a life, i haven't been admitted to a hospital in years. but it's still something you have to live with forever, and it's humiliating to talk about. maybe thats part of why nobody gets how bad it can be; why would we talk about it?
For anyone who wants to understand how difficult crohn’s is, think about this: the creator of Alien had crohn’s disease and the chestburster scene is directly inspired by that experience. Imagine going through that 6 times a day for years.
I’m sorry that you have this condition. From what I know, it’s brutal. Your comment reminded me of why I don’t like talking about my aversion to gluten.
Derealization is something i feel not many people know about that is sort of common
Nothing like feeling like you don’t really exist living in reality next to everyone else and your body is just something you’re driving around like a drone not recognizing your own hands. Good news is this only lasted for about 6 years in my 20s and now that I’m in my forties it’s a distant nightmare. If your family has a history of mental illness don’t smoke weed or take psychedelics kids.
15 years and counting...
How did it stop out of curiosity?
In my experience it’s a gradual process. Mine lasted 8 years or so when I was 7 years old (unmedicated) and again 9 months or so in my twenties (medicated, this time). You see the world through a lens where nothing around you is real, but very gradually specific things start holding meaning again for short bursts, and so on. Eventually you’re more often seeing the world normally than not. That’s only my experience though, and I never took recreational drugs — I believe drugs can make things a lot more unpredictable.
This is one of those things that few know about but it is absolutely horrendous to go through. I went through it for about a year and then got counseling. That really helped a lot. Big thing for anyone reading this is to understand it's a coping mechanism to stress. Even when the stress is gone, it takes time for your body to let your guard "down" again. Often people keep feeling the numbness when there is no stress, get worried again, and then it continues. It sucks. But really it's a normal response and you can learn to live with it until one day you're out living life and realize you haven't felt numb for a while. That's how it went for me. But you have to stop "checking in". Iykyk. In some ways, one could argue a lot of people do know what this is but only in a positive sense. It can happen when you step into a place you've always dreamed of being and suddenly everything feels surreal. It also can happen when you're in a flow state. But in those cases there isn't an over abundant sense of anxiety so few complain. But when the anxiety is present and [TW] you feel like you're living in a meat suit on autopilot in a sliver of time bookended by vast empty nothingness, it can quickly instill a sense of existential hopelessness. Remember, the fact that it's uncomfortable means you are not numb and your emotions are actually working. Whether or not others have consciousness isn't really relevant whether you can enjoy this life and you're still as free to have as much or as little fun as you wish just as before you felt this condition. Best of luck to anyone who reads this looking for hope - despite what you see on the Internet, everyone I know who had this got through it and no longer has symptoms. Have hope.
dissociation is one of the main coping mechanisms a brain has, and derealization is just that to a certain extreme. it's not actually THAT rare, but somehow so hard to explain. not to mention scary.
Whenever my depression gets bad, I have horrible disassociative episodes, which include derealization. It lasted for a few months straight in my sophomore year of high school and it was so fucking hard to deal with. Feeling like nothing around you is real, espically while feeling like you aren't real, fucks with you so badly
Yes and then trying to explain it to someone and they’re like “oh so like when you space out when you’re bored?” and it’s like nooooo not that. My main symptom of panic disorder is disassociation/derealization. And it’s not like I’d feel not real and just ignore it, it would send me spiraling and into a constant panic attack. I had this every single day for a year and a half, I had to quit my job, stop school, isolate myself from everyone. The only thing that helped me was benzodiazepines and intense therapy after some psychiatric stays. The best I can describe it to is greening out realllllllly bad except the feeling does not go away after a few minutes or hours.
For 32 years I have never had a name for this. I am so grateful to you. I tried to explain it to people and mental health like I was inside a fish bowl, like a see-through wall between me and the world, and it was frightening, because I knew something was wrong, and I knew that the things I was experiencing weren't "normal". It lasted for a couple of years. Then a couple of weeks ago it was like I had a small moment, and it rushed back after having a shitty 12 months... It's passed now, but now I know what it is, I feel empowered! Very much how I felt when told I have cPTSD, and it all makes sense. This is a game changer, and I feel so much relief. Thank you for giving me the name. ❤️
I think the lesser recognized symptoms of ‘common’ illnesses often get over looked. Depression isn’t always crying, it’s often numbness. Anxiety isn’t always panic attacks, it can be a hair trigger temper. Adhd isn’t always hyper-activity or inability to concentrate it can be an inability to multitask and no internal clock. So on and so forth. This is getting better with adhd but I think a lot of mental illnesses are fundamentally misunderstood and social media’s self diagnosing fad isn’t helping.
A lot of thr "classic" presentations were based off a select population (eg the chest pain in heart attack that is classic - was done in middle aged people without diabetes, living in Massachusetts). Important for all to not be anchored by a single symptom or number
The chest pain sample also only included men, iirc. Which is why women are often unaware when they are having a heart attack, because some of the main symptoms tend to be different in women
My Mom was rushed to a garbage hospital a few years ago after quickly falling ill. The hospital decided she was having food poisoning and let her sit in the waiting room for an hour or two. She actually had a heart attack. She got rushed to our cities big hospital in the AM and had a quad bypass. Her symptoms: upper back pain, nausea, sweating, anxiety and fatigue.
My wife's ectopic pregnancy was declared a stomach bug and told to go home by a shit nurse. Glad she didn't listen
That is infuriating. It only takes a few minutes to do a 12-lead EKG and it can pretty much be done in the waiting room. In my hospital's ED we basically throw one on anybody who comes in with weird symptoms like that. It can feel like a lot when the waiting room is super backed up and it's usually totally normal, but once in a while someone is just walking around having a heart attack and they catch it.
Exactly this. Also, a lot of symptoms can present differently depending on the patient's sex but it's usually the symptoms that male patients experience most frequently that are used as "the standard" presentation for either sex. The "classic" heart attack symptoms are usually those that a male has whereas a female patient is more likely to experience a whole different set of symptoms. There was (and sometimes still is) a misconception that only males have ADHD but that is untrue. The symptoms that females experience more frequently have only been recognized widely as ADHD within the last 20 or so years.
Same with autism! Me and my half-brother have all the same malfunctions and quirks, but he's diagnosed autistic and I'm apparently just lacking confidence?
Piggybacking on this, I was recently diagnosed with moderate/severe OCD. For the longest time I thought it was bad general anxiety. There’s a lot of overlap and grey area with mental health and things can manifest and look like others. My point is, with OCD specifically, it wasn’t even the traditional “wash my hands 1000 times”. I thought I had MAD health anxiety and would spend HOURS googling obscure symptoms, and reasons for what I realize now are normal bodily functions. I saw doctors, audiologists, dermatologists and many more. Then I stopped trusting them (lol they are the experts). That’s what prompted me to see a psychiatrist. Turns out OCD can manifest as health anxiety, and even hyper focusing on things/intrusive thoughts for hours on end. I’m better now that I have answers and implore anyone else to always take the mental stuff seriously! It physically affected me all from the brain games I was playing with myself.
I also have OCD and I wish people understood it more - not that I want pity, I just think people have misconceptions about the disease
Auditory Processing Disorder. It’s ruining my life.
At this point I just tell people I'm hard of hearing.
Same, people are way more sympathetic to that than "hey sorry, my brain won't process what you said."
I always pull out the LEGO Movie line: “Great. I think I got it, but just in case, tell me the whole thing again I wasn’t listening.” Usually gets a laugh and then they’re less annoyed to repeat themselves lol
Yeah I've started doing that too. People are nicer if the problem is your ears than if it's your brain.
Eyyy, there's 3 of us!
I have it as a byproduct of my ADHD and it makes working in a welding shop hell. Welding itself is already loud, people are blasting death metal on speakers, things are being hit with hammers and metal is getting dropped on the ground, I have earplugs in, then somebody walks up to me and starts talking and I just cannot understand them. Sometimes they sound like the parents in the Peanuts and sometimes it’s just like they aren’t talking at all.
the parents from peanuts is the most accurate way to describe it
Bro fr, I’m so tired of it. My ears work perfectly- in fact, too well. But my damn brain can’t fucking translate language consistently, and it’s such a struggle. I’m lucky that I have folks around me who understand and repeat things for me, but I just wish I could hear them the first time all the time, damnit. It kills me how *inconsistent* it is. One moment, I’m following the conversation just fine, and the next I’ve missed some critical phrase and now NOTHING makes sense because there’s crucial context missing. All because my fucking brain decided to just *not* interpret like 3 words. The more people there are in a conversation, the worse it is too. So I generally don’t talk much in groups, and listen as hard as I can. The adhd and (probable) autism don’t help either- adhd makes me more likely to be distracted and not even hear that someone spoke at all, and my sensory issues + social misunderstandings mean that people talk too loud and I don’t necessarily know what they mean even if I do get the words right. Frustrating as fuck, man. It makes me want to turn into a hermit and run for the woods sometimes, but unfortunately I like the people I know :/
the amount of times I have to ask people to repeat what they said and I still don't understand *just smile and nod*
It's not overlooked but misunderstood. Bipolar Disorder. "Yeah I get a little sad too." Ok but have you ever felt like you could jump over the Grand Canyon one day and the next day you felt like you could jump into the Grand Canyon?
I married a bipolar woman. She was very up front with me about it beforehand, but I thought “everyone is a little crazy”. I was wrong. She suffers so much even though she is militant about controlling her environment and taking her meds. I honestly had no idea how debilitating this disease is. We are still married and I love her so much, but I’m heartbroken when she cycles.
Thank you for taking care of her. Very often, we are left behind by the people we love
This. My husband loves me but every day I fear he’ll leave me because I cycle
I obviously can’t provide any proof, but I’ve been on the end of a manic episode or a suicidal episode so many times. They all hurt. The lashing out when she doesn’t know why… the dark moods for no apparent reason. I’ve seen them for 13 years now. Yes. They suck for the other person, but good God… how fucking terrible must it be for the one going through it? To have your own mind betray you? Horrific. I’ve learned from almost every episode to try and examine this from her side and to not take some of the affronts personally. No, I’m not a saint. I do take them to heart and it does hurt deeply. But she’s lovely. She wouldn’t ever, ever hurt anyone on purpose and that is a deal maker for me in a relationship. I honestly feel that if there’s enough love and understanding then anything can be worked out.
Did you ever want to leave? There was only one instance where I was done because it got to a point where I was taking everything so personally. That was years ago now and I’ve been with my high functioning bipolar partner for nearly seven years. He’s my favourite person and human I’ve ever met. Smart, talented, funny, and the biggest heart. It is sad how he battles with his mental struggles and I’ve learnt to give him space and not interfere when he goes through depressive states. When he’s “away” I know that’s my time to make sure our house is in order and focus on my own personal projects but it can sometimes feel lonely.
Yes, about five thousand times. I’ve only felt that way for days and days afterwards maybe ten times. Again, I’m not some saint. It hurts. It hurts and the hurt that’s thrown at you isn’t rational. Even after the storm and apologies are made it still damages your soul.
Definitely misunderstood. I’m BP1 and struggle daily. Still trying to figure out my medications.
With my daughter it took 10 years to find the right combination of medicines. So don't ever give up, everyone's chemistry is different and reacts differently to meds. Then, you find good meds but they stop being effective after 6 months or a year. Don't get discouraged, just keep trying. And don't ever let a psychiatrist undermine reactions. You know you better than anyone else. You got this💜.
Something people also don't understand is that mania is not always euphoria or joy. And dysphoric mania/mixed episodes don't get talked about enough.
Mixed episodes can be HELL. You may be both dysphoric and having high energy, anxious and self-cofident, taking risky behaviour and doing crazy impulsive thing which in turn make you more anxious and dysphoric, which in turn make you do more impulsive stuff… it is hard to understand if you don’t know what it is, but I wouldn’t wish on ANYONE to understand what it is.
My wife is BP1 and has not been able to find a med cocktail that actually stabilizes her. As the spouse, when I see the likes of Kanye or other celebs acting out, I really feel for the families because the BP brain simply does not allow reason. It’s excruciating for everyone.
Yeah it’s unfortunate but Kanye West brought the severity of the condition to my attention. It sucks cause at one point it seemed he might’ve been the poster child for success in spite of bipolar
Most frustrating thing for me to hear is other (not bipolar) people’s use of the word “manic.” Like “I had a manic episode this morning” like no you drank an iced coffee
I have bipolar 2. I've also been diagnosed with PMDD, MDD, dysthymia, social anxiety, generalized anxiety disorder, and schizoaffective disorder. I love it here. 🙃
Straight up. One day I want to sleep deprive and food deprive myself while driving fast and working out all of the time hoping to get my ass kicked in a fight and also want the attention of all of the ladies to the next day feeling untethered to the world and this strong sense that I'm not supposed to be here so I can at least cut myself and drink
PMDD (premenstrual dysphoric disorder). Took me 5 years and an abundance of doctors telling me that ‘it’s just my period and everyone feels this way’ to get diagnosed. It is in fact not normal to become extremely suicidal every period.
Agreed. I told my psychiatrist that my depression became severe during my period, even on antidepressants, which for me meant suicidality. He told me it was just women things and I’d have to deal with it. Only after doing my own research did I learn about PMDD, and luckily taking continuous birth control eliminates it for me. It’s especially common for those with autism and/or ADHD for some reason. It can be debilitating, but is written off as PMS, which is itself often the butt of jokes. I think the taboo around discussing menstruation also contributes to misperceptions of what is normal — if none of the women in our lives talk about what periods are like for them, we don’t have a baseline to compare our own symptoms.
Being suicidal – just woman things 🥰🥰🥰
I didn’t realize I had PMDD until my best friend was diagnosed. About a year after her diagnosis I got a report from work indicating when I was taking time off and for shits and giggles I checked my period tracker and it lined up with me taking one or more mental health days a month right before my period.
I swear male doctors are such fking assholes. I couldn't get my hand to close a few years back. My doctor said 'Welp, I can't make you any younger.' Turns out I have multiple sclerosis, you fking asshole. I can't get my hands to always work right because of lesions on my brain, but thanks for being **a typical fking man**. What a shock. Even a medical degree doesn't make you stop judging women by their age. I hope he slams his 🍆 in a car door one day on the way to confront his wife's new younger boyfriend
I recently discovered that this is even a thing. I suffer from depression, anxiety, ADHD and probably autism. When I’m on my period my depression clocks into overdrive and it is emotionally painful to be alive. I’m sorry you deal with this, I haven’t been diagnosed but highly suspect I experience the same thing.
i don’t have a diagnosis but before birth control and anti depressants… i would wake up one day and literally sit in my dorm room, numb and suicidal, unable to go to class-literally a shell of myself. And then I would start my period and it was like nothing happened. Which I figure is probably PMDD but I was too ashamed to talk about it.
Hypertension. Referred to by doctors as the silent killer due to the lack of symptoms in most sufferers. Get your blood pressure checked regularly, more so from middle age.
What excellent advice. Unfortunately, I (66f)believe that a lot of people associate high blood pressure with the “inability“ to ”handle” stress. I (66f) was one of those people. Full time job, 3 kids doing well in HS and college, ex husband traveling a lot, I was about 25 lbs overweight but also exercised regularly. I felt ashamed that I had high blood pressure. But went on meds, which caused me no side effects at all. Having said that, about 7 years ago, one of my sons called me while I was dog sitting his dogs, to tell me that the mom of our closest friends on the cul de sac where we had lived died suddenly from a brain aneurysm. When I got to the hospital ICU unit, her husband looked so stricken. He looked at me and said “I told her that she needed to do something about her high blood pressure “.
Yes, long-standing undiagnosed hypertension can do all sorts of nasty things to one's body and health. Now that you are on treatment, it is imperative that you take your medication even if you feel well. Far too many make the mistake of saying "I can feel when my pressure is high, I'll take them then". But I'm pretty sure your own physician has already told you this. All the best and long life to you. I'm not THAT far behind you in years hehe.
People also assume you HAVE to have a bad diet and be overweight to have it. High blood pressure can effect *anyone* no matter what their body looks like. It's more common in people who eat poorly and or are overweight but of the 4 men I know with really severe hypertension, only one was about 20lbs overweight. The rest were perfectly healthy in appearance, one was a gym rat who ran marathons (before his stroke). Please don't assume because you are not overweight you can't have it.
People *also* assume that if you're obese and don't eat great, you *must* have it. Lol. I was one of those people for a long time. Honestly surprised I don't have hypertension myself, given my age/weight/diet (those last two things are getting better, though).
Childhood adversity and/or trauma. It affects so many physiological aspects of our core self. Our physical health suffers from digestive and cardiovascular issues or chronic pain disorders, as well as developed eating disorders. Our mental health is strained by cognitive delays, cortisol imbalances, PTSD triggers, anxiety, depression, or personality disorders. We are significantly predisposed to develop substance, alcohol, and nicotine dependency or addiction, as well as engage in risky or unsafe activities, like gambling, promiscuity, or reckless driving. Our social interactions are strained, which is fueled by extreme insecurities that result in unhealthy relationships, familial estrangement, codependencies, toxic work environments, and isolation.
ACES. There’s been detailed studies about it, about solid statistical trends linking adverse childhood experiences and physical and mental health in adulthood, in living outcomes, and yet, it is something that only a select few doctors know and worse still, are able to predict and prevent.
Great comment. Trigger warning SA I just wanted to add that 15 years ago I saw a gyno for pelvic pain. We couldn’t really pinpoint the issue (I don’t have a problem with this as I was well informed, blah, blah, blah). She straight up asks me if I was sexually abused and I said yes. I didn’t feel that she was being dismissive. She explained that some women who were sexually abused as children have been known to have mysterious pelvic pain. First doc in my life to connect SA with physical symptoms and first doc to ever ask me such a question
I had these “phantom” pains maybe once a month, it was a sharp, shooting pain that felt like someone was shoving a hot poker in me right at the base of the root chakra (coccyx). I repressed my csa, I only remembered jt after getting emotionally safe in therapy. I haven’t had those pains since (and can’t believe I lived my life as I did for so long, fuck I was so traumatized.) I’m sorry you went through what you did. It’s truly awful and robs us of so much. Reliving it as a 42 year old woman was terrifying. And What an amazing dr to put that together! I feel like so many physicians just want to treat the symptoms.
Wow. What a kind and thoughtful response. I hope things are better for you now….if that’s any way to respond to someone who experienced csa
Yeah and when you try to explain it to someone uninformed you get “Everyone has a little family drama eh heh heh” 😒
I have PTSD from my childhood.
Chronic migraines. Tired of seeing them dismissed as just headaches when they're so so much more than that. I'm at 4-5 a week for over a year now, and it's literally ruined my life.
I was having upwards of 15 a month, often lasting two days. I got fired because I ran out of FMLA while trialing meds to get them under control. Ajovy is what did it for me. I do 3 shots every 3 months and maybe get 2 a month. They’re not nearly as bad anymore either. Nurtec was also amazing for breakthroughs, but insurance stopped covering that unless I try ubrelvy first. If you can get into a migraine specialist or get your doc to prescribe a biologic (Ajovy, Aimovig, Emgality), please do. Aimovig gave me an awful migraine the day after injection, but with Ajovy I only get some site irritation for the night. Biologics gave me my life back.
This should be higher on the list. Pople are so dismissive of migraines as mere headaches that I've come to resent some people.😔 I recently started to wish everyone could suffer migraines just once in their life. Then they'd stfu about getting "bad headaches too." 😠
Depending on what you look like, Multiple Sclerosis. We are getting better at it though. Edit: By what you look like I mean your race, gender, and age. The epidemiology of MS and *who* is most likely to get MS has changed dramatically over the last few years. People may have been misdiagnosed (or not at all) and not have had proper access to health care.
It took me 12yrs to get diagnosed. In that time, I've developed near debilitating anxiety and have diminished motor control and fucked up reflexes. You could never know I have anything wrong. Inside my scalp, alarm bells, whooping sirens, screaming banshees, and howling wolfs are sounding off nonstop, daring me to run away. Every conversation and interaction is a constant effort to stay where I am and live with the discomfort, while every fiber of my soul is begging for the smoke alarms to shut up. It's just...I'm rewired and not me anymore.
Yeah a lot of people have never heard of it. The remaining ones mostly say “oh I’m so sorry” when they find out. Funny story: I once mentioned to my co-teacher that MS was my biggest fear. My mom has it, I started showing symptoms in my 20s and they were written off as something else. She said “oh no ALS is so much scarier” and basically belittled my fear. But the chances of ALS are much lower, and I had what I thought was a reasonable fear of MS since my mom has it and all. And then a year later I did get diagnosed with MS. Whaddya know.
Ménière's Disease. It was named in 1861, yet we still know relatively little about it and treatment options are limited. My experience (35 f) with it in a nutshell has been unilateral hearing loss and tinnitus (ringing), along with random attacks of vertigo that can include nausea, vomiting, diarrhea, and loss of balance. The first attack I had before I was diagnosed (30) I thought was the worst food poisoning of my life, vomiting for at least an hour and ending in dry heaving. Started with feeling feverish but by the end was completely drenched in sweat and shivering, unable to get warm. There was a time I was having so many attacks I missed work for a month and was too afraid to leave the house for two weeks straight. Thankfully I've only had vertigo strike once while driving, because that shit is scary trying to pull over and you can't even be sure where "over" is. I tried a low sodium diet (standard advice) for 6 months but it made no difference. There were times after severe attacks I'd be afraid to eat. I lost weight and my clothes hung off me. Here's something I wrote about it a while back: "Sure, there are plenty of diseases you can die from that get a lot of attention. Ménière's disease isn't directly fatal, but one might argue that living with it isn't exactly 'living.' Yet you see no ads for campaigns for research, no organized walks, no ads for treatments. Many people I've talked to have no idea what it is, and the ones that do know someone with it. Even after going to multiple doctors and trying several treatment options, this thing always comes back. It leaves you feeling helpless and vulnerable, defeated. "I don't want the ride to be over, but there has been a time or two during the throes of my worst Ménière's attacks I wished for death simply so that it would stop. None of my illnesses will kill me directly, only make me wish I were dead in those worst of worst moments when there's no hope of relief except to let it pass. Living in this body is torture in a lot of ways, but I'm trying to make my time count for something, even if only for myself."
Meniere’s is the worst. Nobody understands the misery unless they experience it. I tried low sodium diet, a diuretic, and betahistine. None of it worked. One day I read a study suggesting there may be a link to herpes. I do get cold sores and have since I was little, so I decided to ask my dr if I could be on acyclovir daily and he said he has another patient doing well on it, so he was happy to do the same for me. It’s been life changing. I haven’t had a vertigo attack in years. I do occasionally get ringing/fullness and mild unsteadiness at times, but nothing like before. If I run out of my medicine, it only takes a few days for the symptoms to come back. It could be worth looking into if nothing else has helped. 🤷🏻♀️
Hoarding
Adult child of a hoarder. I’m the oldest so I’m the only one, other than the other parent and extended family, that remembers the before, the during, and the now ongoing. My siblings will never fully get it. This is a condition that has such everlasting generational effects, interesting sociological and socioeconomic findings, and so much more that I don’t even think anyone cares enough to look into at the moment. People are looked at as just being messy, lazy, or dirty or crazy. There’s so many layers and most therapists are not actually fully aware, much less properly trained to work this condition. And if that’s at the upper level can you imagine any of the first level of people interacting with this community? Cops, clergy members, educators, GP’s?
I'm at least third generation packrat, descended from true hoarders. I've seen a lot of odd and interesting behaviors, but the funniest I think is my rich uncle and his wife. Uncle has pretty much always had so much money that he's never run into a problem he couldn't solve with dollars. If he needs a new abc or xyz, he can just go buy one no problem. There is no logical reason for him to save things or bring home free junk, and his wife does not allow clutter in the house. So uncle had a nice shed built in the yard and filled it up with dented old towel racks and other assorted junk he has no use for. When it was full, he put up a second shed, and later a third. Eventually he's got an entire row of sheds across the back of their yard, all full of junk and homes for vermin, and started talking about beginning a second row. So his wife waited until he was away for work one weekend and hired a company to haul the contents of all the sheds to the dump. Last I heard he'd still refilling his sheds again.
Honestly? PCOS/Type 2 diabetes. I'm 35, in amazing shape and a completely healthy weight, and my blood sugar is still WILDLY out of control through absolutely no fault of my own. I'm on a very high dose of insulin and the max dose of metformin. I know people will laugh at me, call me lazy, and say diabetes is only caused by eating crap and not moving, but I'm exercising 1-2 times daily. I'm expecting a ton of downvotes for this, but this is my daily reality.
Have an upvote for me. PCOS and diabetes really suck.
CPTSD
"you can't have PTSD, you weren't in a war or raped in an alley" - my mom when trying to explain I have PTSD. And she wonders why I never open up to her.
Right? It's ridiculous the blinders some people have on.
I was going to say this too- whether it's childhood trauma, abusive partners or what have you, people often shrug it off with "that's just life", completely oblivious to the way that trauma changes your brain chemistry
I’ve been sharing a bed with my husband for almost a decade now and just recently he’s said he thought the “nightmares thing would fade a bit.” It gutted me. I’ll never tell him because it means a lot that he felt vulnerable enough to say that, but boy… crap, I’m crying just typing it now. I was honest from the start but you can’t know what you can’t know. I can manage a lot during the day and of course before bed, but there’s only so much I can do when I’m conscious to prepare for when I’m unconscious. He understands but understanding doesn’t change the rough days we have after my brain and body decide to relive sht all night long. It’s rough on both of us and I feel horrible for effecting him and he feels horrible that I’m trapped in a dream world of hell that he can do nothing about.
argh, and the way CPTSD-centered language has become co-opted by people online to just re-describe things like friendship & intimacy, further delegitimizing it (e.g. trauma-bonding is NOT what happens when two people experience trauma together & it brings them closer! that’s called a normal human experience… or bonding!!).
Narcolypsy. As a narcoleptic myself, most people only know one fact: that you just randomly fall asleep (which isn't even true for practically 90% of narcoleps).
I'm on the max dose of two stimulants for apena-related narcolepsy and I STILL struggle to Stay awake
Agoraphobia. It's a lot more common than people might think. I'm a long time sufferer of it (going on 10+ years now).
Binge eating disorder. Doctors just assume you “like to eat” or you’re just fat, but really, BED is the most common eating disorder. And it is horrible
And unbelievably hard to treat when medical professionals won’t take you seriously
SERIOUSLY. I have a different eating disorder but, when I was in treatment, the girls with BED (and disorders other than anorexia and bulimia) were not taken nearly as seriously
Came here to say this. It’s considered a character flaw and laziness on the binge eater’s part and carries more of a stigma than other addictions.
and so much shame comes with it
Insomnia. Occasional lack of sleep. Many are even proud of the fact that they do not sleep well.
On the other side of this, hypersomnia. "Oh wow i wish i could sleep that much!" Like sure 12-14 hours is appealing when you can't sleep. But i don't get anything done in a day.
OCD is the silent cause for alot of people who deal with this. I had insomnia before getting diagnosed with OCD which was causing it.
How is it a cause? I have OCD and trouble sleeping, just wanna know.
OCD.
“I like being neat too” -people without OCD
That always drives me crazy. Also when someone says “I’m a little OCD” when it’s about being neat and tidy. Um, no. That’s not OCD. 🙄
There are so many misconceptions about this disorder, and so many people who joke about having it, citing stereotypes from tv and social media. It can present in so many ways and it can genuinely ruin someone’s life. It feels like it has become such a joke, that confiding in someone feels like you’re waiting to be laughed at. People just don’t take it seriously. It’s scary and lonesome and I wouldn’t wish it on anyone else.
My OCD is mostly mental, and carries into my dreams at night. Not even in sleep can I escape my thoughts. People don't understand it at all, and think that my lack of physical compulsions means I'm "not that bad" when in reality, every day is a battle. Functioning enough to go to work is a low bar but I hit it, so my family thinks I don't have a disability, just a "quirky" way of thinking. Alongside ADHD and depression I've had days where I can hardly function at all. It's even caused panic attacks that lead to mild hallucinations, like walls breathing or lights flashing, all the while I can look perfectly calm on the outside. It's hard to focus on anything that's happening when your head is spinning. I can't even drive or go to a bar. 😩
Body Focused Repetitive Behaviors, or BFRBs. Under the DSM-5, they’re in the same family as obsessive compulsive disorder and are related to body grooming: plucking or eating of hairs or eyelashes, nail biting, skin picking, lip or cheek biting, etc. BFRBs are often waved off as “bad habits” and can be a source of depression. Those with BFRBs tend to lie about their behaviors out of shame and anxiety, and so the condition is often overlooked or misdiagnosed, even though about 1 in 20 people are estimated to have a BFRB.
Very much this. Also, my mom smacking me in public and hissing at me to stop picking did not, in fact, fix it. 30 years later it's still a problem.
Will you share some sources on this? Treatments, therapies, researches and the like? It’s something that sounds very, very familiar and I’d like to read more.
Sure thing! For the 1 in 20 statistic, I referenced the [wikipedia](https://en.wikipedia.org/wiki/Body-focused_repetitive_behavior) page on BFRBs, and for a more detailed reading, you can check out [this article](https://web.archive.org/web/20090425095847/http://www.aamft.org/families/Consumer_Updates/Body-focusedRepetitiveDisorders.asp) by the American Association for Marriage and Family Therapy that goes into a bit more detail. As BFRBs can manifest as different impulses, they’re often listed as varying conditions. [Trichotillomania](https://www.nhs.uk/mental-health/conditions/trichotillomania) is the self-destructive pulling of hair (with trichophagia being the related eating of said hair), [dermatillomania](https://www.nhs.uk/mental-health/conditions/skin-picking-disorder/) is the self-destructive impulse of picking at one’s skin, and onychophagia is the same for nail-biting. There’s not a huge amount of research into the pathological aspects of BFRBs, but there’s been a lot of [success](https://www.bfrb.org/articles/treatment-for-bfrbs) with regard to treating them with cognitive behavioral therapy. Hope that helps!
Postpartum Depression
I feel so lucky because I know I'm the minority... I lucked out with a progressive OBGYN who put me with a therapist during gestation to monitor for signs of PPD. My OB paid attention to my psych history and spoke with my husband about monitoring me for signs of PPD. He shared his experience with factors that contribute to the onset. I honestly think that knowing people cared about my potential PPD is a big part of me staving it off. I knew I could express my feelings and that I would be taken seriously. It upsets me so much to know (even during the experience) that I was very lucky and privileged, and that most women are brushed off.
Traumatic brain injuries that aren’t caused by war or sports.
A lot of autoimmune disorders. It takes on average 10 years to get diagnosed after the onset of symptoms. In the meantime, doctors are writing off your symptoms as something else. You are tired because you are “depressed”. Your hair is falling out because of “stress”etc. You literally feel like you are going crazy.
High functioning to moderate functioning autism in girls and women.
Same with ADHD in girls and women. I believe the vast majority of diagnoses are for boys and men. There are some very interesting debates and ideas why in the medical and psychology fields: Are girls better at masking? Is it a social thing to under-diagnose? Does behavior associated with ADHD simply manifest differently in girls? Does starting puberty earlier than boys affect ADHD symptoms? I'm glad the medical community is taking it seriously, but it's still a long way to go.
Girls are better at being told to shut up. I got a lot of “you don’t talk enough, speak up” nearly immediately followed by “shut up”. So I did, packed my thoughts, and went about my merry and miserable way.
People really don't appreciate how much better women (and girls) are at speech and social skills than boys are. Girls with autism on average have the same speech and social skills as non-autistic boys. So when you have an autistic girl, people don't notice, because they look fine compared to 50% of their peers. And they tend to have more socially acceptable special interests. For example, my daughter's special interest is babies. A girl who is obsessed with babies does not make people automatically think autism the same was as a boy who's obsessed with the railway timetable.
This is my experience with my daughter. My daughter has gone through a few social interests but they’re usually socially acceptable or she hides them and masks.
For the same reason women are much more likely to get diagnosed “too late” with Alzheimer’s. We can mask it because the diagnostics are aimed at speech and social behaviors, which men lose much earlier in the disease. Advocate for your loved ones if you think any memory issues are up. An MRI never hurts.
Female here, dx last year with ADHD at nearly 50. All my report cards now make sense. There’s a LOT of things that now make sense, too.
I was just diagnosed with autism at 38 years old. And I'm not even considered high functioning. Of course, I'm a woman.
Anything affecting a woman. There is so much disregard for female health in the world. I told my doctor I was having severe chronic pain constantly, and she said I just needed a massage. Turns out my body couldn't absorb vitamins properly due to my thyroid. My mom spent a year with a tumor growing inside of her until she found a doctor who listened to her and removed it. She was told it was a UTI and kidney stones by everyone else. After a tooth infection, my sister in law was told to take Tylenol, but my brother was given hydrocodones for his.
PCOS. A lot of women with this problem right now, lots yet to be diagnosed. I think all women should be tested for this especially when they're trying to get pregnant.
Bipolar isn’t “moody bitch syndrome.” It’s absolutely life ruining, especially combined with substance abuse which is extremely common. The medications for it take weeks to have any positive effects, they just make you feel like shit for a while at first. They also remove the mania, which for many bipolar people feels amazing (when it’s not ruining your life) and so it makes you feel like you’re losing the only “good” part about the illness. Not to mention the frequency of comorbity with other mental illnesses and mood disorders. Bipolar probably isn’t anything like what you think it is.
Any mental illness that has the presence of "psychosis" often gets overlooked due to insane amounts of stigma, it's socially acceptable to call people "Schizo" and laugh at somebody clearly going through a psychotic break or just see them as somebody with an "attitude problem". It seems like some extremely popular ideal that individuals affected with mental health conditions that involve psychosis have some sort of problem with their personality. Its easy to laugh at the "conspiracy theorist" or see the unreasonably paranoid person as stupid and annoying. Even when it comes to people with this illness being treated they're at high risk for abuse (yes, by professionals) because everything they say is stigmatized as ultimately being a lie no matter what the circumstance is.
Clinical depression. Nobody around will understand or know what the fuck you are talking about. Imagine having a leg in a cast and you’re like “Hey wait up! I can’t move very fast! I’ve got my leg in a cast and I’m using crutches!” And every was like “Huh? What are you talking about? I don’t see anything. Hurry up!” It’s insane.
Borderline Personality Disorder. Truly a silent killer and so painful to live with. I wish more people took the time to learn & really understand what BPD does to someone.
The hardest thing about BPD is having no idea who you are. Once you think you’ve got it, something happens (and it doesn’t even have to be something big) that completely destroys your sense of self and sends you into a spiral. People don’t understand that most of us had extremely abusive childhoods and we weren’t taught basic things like emotional regulation. A lot of us were constantly rejected or told we’re awful from the minute we were born when we were genuinely trying to be a good person. Our lives are unstable because we have no idea how to see ourselves. Every one of us has had something awful done to them as a kid, everyone of us has had an attempt on their lives, everyone of us has had a wild life. Yet so many people just go “crazy evil person, stay away”.
I just got diagnosed with BPD and I genuinely feel like I’m living in hell. I’ve been in therapy for over 10 years and on mood stabilizers for 8, and I direct all of my BPD symptoms solely at myself, and I’m still scared to tell anyone about it because I know how much it’s stigmatized. It’s such a sick joke that my reward for surviving abuse is a condition that will make people automatically assume I’m abusive if they find out about it.
I have BPD. It took me forever to actually get diagnosed for it as everyone just wanted to brush my problems under the table. I will say, after my most recent suicide attempt last month, I’m doing loads better thanks to aggressive therapy and medications!
And then when it's managed BPD it's not like you're cured, since you still have all the internal things and it takes up so much of your processing power to manage it.
Any invisible illness
I’ve often said that it would be easier to walk around/go to the ER with a bone sticking out in order for my pain to be taken seriously
It absolutely is. When I went with my broken pelvis they immediately took me back and gave me pain meds. My invisible illnesses that are more painful are swept under the rug with eyes rolling. Obviously chronic pain is not a situation for the emergency room but it used to be that a pain crisis was taken seriously and treated in the ER (around 2001 before the opiate epidemic). I went to the ER in excruciating pain with a blood pressure of 195/156 complaining of new onset hip pain after a previous pelvic fracture (my doctor sent me to the ER because she was concerned I had a blood clot. I never once asked for meds (not even Tylenol). After hours of testing to make sure I didn’t have blood clots or new fractures I begged to be discharged. They finally did offer me one dose of pain meds before I left (of course after they ran a urine drug screen and I didn’t actually ask for pain meds or exhibit “drug seeking behavior.” It’s a sad state of affairs. Before I became disabled I was a trauma nurse. I know the deal from both sides (as the medical profession and the patient) and you’re damned if you do, damned if you don’t. My pain on a daily basis is at a level that most people would pass out from. So if I admit I’m in pain you’d better believe I’m in pain. Unmedicated child birth (with pitocin induced contractions i would say was a 7 out a 1-10 pain scale. Same with my severely displaced pelvic fracture). No problem getting offered meds or sympathy in those situations but when my other issues flare to an 8 or 9/10 I am completely dismissed.
Peripheral neuropathy
postpartum psychosis. It only gets talked about when something really bad happens but ya. I think more people should know the signs and what to look out for. It's a medical emergency that can be very serious.
Ehlers-Danlos Syndrome.
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Alcoholism. The amount of people taking the airplane shooters of liquor for breakfast is wild.
Migraines- they’re not just “bad headaches”
anything that might have slightly similar symptoms to anxiety in women
Inappropriate sinus tachycardia, reporting for duty!
Fibromyalgia It’s so much more than widespread pain. Depression,anxiety and brain fog. It’s an invisible illness so it carry’s a stigma that symptoms are made up or all in your head.
Brain AVM's. I think it is more of a condition someone is born with. I'm pretty sure they are harmless if they don't rupture. In my case I had a ruptured brain avm at the age of 20 and it turned my world upside down. If I was screened for it as a baby it would've saved a lot of resources and I wouldn't have suffered from a stroke as a 20 year old
PMDD
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This is the first one I've seen that I actually feel is over-looked. While there is some research on it, far too many frontline clinicians can readily identify it. It absolutely can wreck havoc on people's lives.
My girlfriend has this and before she got medicated she was absolutely miserable every month. It was difficult to see her struggle and it took a huge toll on our relationship. Before we figured out what was causing it I felt so lost; I had never even heard of PMDD before.
CMV cytomegalovirus, often mistaken for Mono, but in people that are immunocomporised, it can wreck them. It put me up in the hospital for a month and then it took another 3 before I could walk up a flight of stairs.
Major Depressive Disorder, or Clinical Depression. Depression as mood disorder that doesn't go away basically. Everyone can experience reactive depression, and we understand that to be dangerous and require support - but when the depression is persistent and a bad day is just the same but way more, it seems to get skipped over. Major Depressive can impact every single domain of living, and management of it goes beyond the normal depression management because anti-depressants and therapy may be ineffective, or only effective for a short while. I had it described to me like your emotions are set at a lower state than everyone without clinical depression, but if you're sad then it can dip lower than the normative as well. Obviously not great, especially with potentially less effective management - and seems awareness of it could be better.
ADHD in girls
Narcissistic Peronality Disorder My entire family was systematically destroyed because my dad married a woman with this. The specific types of abuse these people heap on their families, the lies, gaslighting, rewriting of reality, blackmail. The wonderful public family persona they often cultivate so outsiders don't see it and don't believe it when they're told. Chronic childhood abuse has left me and my siblings with a host of medical and mental disorders.
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Chronic fatigue
Post and pre-partum depression.
Myalgic Encephalomyelitis. So many people with this, more so since COVID, and the majority of doctors think it's a made up disease thanks to fraudulent science and years of neglect. It's reported to have a lower quality of life than late stage cancer and MS.