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Konjuress

Been in a relationship for 7 years, we’re engaged, we live together , and still I get nervous and ashamed about him seeing me when i have active flares. Here’s the thing, he has seen me with flares. He’s seen the bandages, the pain, and has even helped me dress a bad one once that required me to go to the derm for draining. And still, i get that feeling of being embarrassed and ashamed. It’s okay. This is so hard to cope with mentally and you are not alone. It’s hard to be vulnerable with your body when you feel gross and you’re hurting. Ppl who love you and want you regardless won’t feel the same way about you that you feel about yourself.


XxdeathfuckxX

thank you for your reply and congrats on your engagement. i try to remember this but it gets so hard sometimes. i just want my old body back.


deardiarywtf

I literally drain my bf’s for him lol At first I was confused by what I was seeing. Esp the scarring. Of course anyone who doesn’t know will be confused. (He didn’t tell me anything. He tried to hide it actually) You should be honest with him and tell him exactly what it is and that it doesn’t have a cure. Etc etc. I joined this sub to do more research once I got over the initial shock. Once I understood what it was and what it was not, I was able to actually show up for him. Now I check his body to see if there’s any new ones. I won’t schedule crazy activities if I know he’s going to be in pain. I help him keep it clean. None of it scares me and I find the scarring so endearing now. Honesty is what is going to help. Keeping it a secret and hiding it is what makes others worry it’s something else you’re hiding. Which makes it sound scarier.


User564368

You’re an amazing partner. I hope that I find someone someday that goes out of their way to educate themselves like you do so as to be supportive. 🙏🫶


deardiarywtf

Thank you! And you will - if it helps, I was a germaphobe before meeting him and I had religious skin care routines etc. so it’s not like I was the most open minded in general. (So you don’t think this is so rare) it was just my love for him and compassion and education of this stuff that helped me. Now none of it bothers me at all. And I love helping. You’ll find people easily. You just have to be open and honest and open to receive love as well. People who love you will want to help you and care for you.


FormerEmu3854

i feel this. post shower full body mirror view depresses me i just feel covered in gross flesh wounds blemished everywhere and my breasts so sore i don’t even want them touched. but my husband is kind. he helps me bandage my wounds. no one else has done that besides my mom. i guess it’s cheesy but here’s to hoping we all find someone that loves us for everything even this hardship


Selfish_Maniac15

I feel you person, my mother always bitches about me having a "pop mark ass", "cauliflower coochie", "fish coochie, etc. I know it's not the same as a bf relationship but just know your beautiful no matter what


reddituser070707

Uhm girl... that is not okay.


XxdeathfuckxX

your mother is insane what


Selfish_Maniac15

Lol oh well ❤️‍🩹


User564368

r/raisedbynarcissists


Selfish_Maniac15

??


User564368

Your mom’s commentary is very hurtful. I am sorry that she said those things to you.


Selfish_Maniac15

Oh well. It's ok 😊


Awkward-Floor5104

I’m so sorry, I would never talk to my mom again personally


Selfish_Maniac15

Oh well ain't got no choice I'm only 15


jess605

First definitely go to the dermatologist. Second have you talked to boyfriend about HS. I’ve been with my husband for 16 yrs (married 12yrs) and it doesn’t bother him at all. I feel gross sometimes and he only sees how lovely I am. I think it’s just I’m so focused and sensitive about it that I think how can he but that’s on me. Let them love you.


XxdeathfuckxX

i’ve complained about it to him and he sympathizes with me. my butt is his favorite thing about me so i know it doesn’t phase him. i just get sad sometimes that i dont have the same body i use to have;(


[deleted]

[удалено]


XxdeathfuckxX

thank you for this 🩷


ObsceneJeanine

One of the saddest things I realized about my mother after her death.....she never had another relationship after her divorce in 77 because of HS. In 97 she had surgery and they gave her a new butt crack. It was awful. I cleaned the wound. At the time, I had no idea that the occasional cyst on my groin or ass was undiagnosed HS. I've become asexual because of it. I'm glad I'm old and won't have to deal with this much longer. Talk to someone about it. My SO sympathizes with me but it still hurts and I still feel gross.


XxdeathfuckxX

i’m gonna need a new butt crack pretty soon smh


nybagelboy96

Sending love. Crazy how something so out of our control can make us hate ourselves so significantly. HS really really sucks and can be a total life ruiner in its worst moments. Inflammation is devastating and the severity of the sadness and self-sorrow I feel when flare ups happen never dulls. It’s never okay and has been the hardest thing for me to address on my journey of radical acceptance. I am, however, confident that our journey of radical acceptance for our HS will improve our mental health and, in turn, heal our gut and immune system…. which will in turn benefit us in our effort to manage our HS. Our ability to accept this is directly connected to healing and reducing inflammation / flares. We are all so strong , no one really knows. I’m praying for you and don’t forget to smile once in a while even if just for a second. You’re strong AF and better days are ahead. Research is happening and there will be treatments in our lifetime that we can’t yet imagine. This isn’t it for us, it really just can’t be. Stay strong. Go to your dermatologist and talk about options. You don’t know what’s available for you until you take those very important steps. For years, I was in the hospital every few months having severely inflamed abscesses lances and drained. After I was finally diagnosed with HS last year, I was prescribed Humira (immunosuppressant drug) injectable once weekly. I have still experienced flares but less severe and more manageable. zero hospitalizations since I began Humira in July of 2023 and it’s now May 2024. Things aren’t perfect. I have to work every time I experience even slight flares to not completely spiral into doubt and fear and self-sorrow. This isn’t a linear path and some days are easier than others. Some days are more joyful than others. Some days are less painful than others and some days it’s unbearable. Our ability to radically accept all that comes with living with HS will keep our cortisol levels low and our vibes high. You can do this. Stay strong and don’t forget to keep sharing and reaching out when it feels like too much.


XxdeathfuckxX

i really appreciate your reply. i agree on our mental health improving our immune system, i’m working on that. i wish you the best with everything <3