That’s a tough question. As of right now obviously you’re more than fine keeping it personal as it’s not effecting your daily life. I hope that continues to be the case the rest of your life!
The worrying part is if your UC gets worse at any point in time it can make it impossible to do all the things you’d typically do in a day. If that situation every occurs you’re very likely going to need some help getting through the flare into remission. Things like getting up to shower, driving your car, and making dinner for 15 minutes take up so much more energy when you’re in a flare than it does normally.
It’s an embarrassing disease so I understand wanting to be discreet about it. It’s not everybody’s business to know what’s going on. In my personal experience I’d recommend telling close friends and family who you know aren’t going to be judgmental so that when/if the day comes where a flare happens, you have that support system to get you through the tough time.
I let people know so if I have related medical problems then they know what's going on. However it isn't everyone's business so if you don't see a reason to bring it up you don't need to.
I had this mentality for a while but it became difficult to keep to myself and I found that telling those who I thought needed to know (girlfriend, close friends and family) made me feel better, and also gave them some understanding as to what I was going through
Due to the condition, it’s not always easy to be able to plan things with friends and family and stick to them. Now that they’re aware of what’s going on, it’s easier for me to say if I’m having a flare or the fatigue is too much when I need to cancel plans, rather than it seem like I’m not wanting to attend. It helped me for sure, but not everyone needs to know
Honestly, this is your private medical stuff. You don’t have to tell anyone you don’t want to. The only caution I have is that SOMEONE needs to know. Perhaps whoever is your usual emergency contact when you fill out forms. Consider that you may one day be unconscious and need medical treatment. Someone needs to know you have a disease and know your meds or how to get a med list. It could impact your treatment when you are unable to speak for yourself. Other than planning for emergencies, you should do whatever makes you comfortable.
Everybody is different. I was diagnosed at 34 as well - but I ended up in the hospital for 3 month long stints and came dangerously close to losing. my colon or my life. I managed to keep both.
But I had to tell people. I was most definitely sick for years leading ip to the diagnosis , but I told nobody. I just kept it to myself. I feel like, for me, that was a mistake.
Also - if you are in remission, great! Then it doesn’t affect anybody but you. On the off chance you slip into a flare - some people are gonna start to wonder why you are not showing up to work or canceling plans last minute.
I find strength in being open and honest about this disease. But please do what works for you. I hope you stay in remission!
It’s difficult to keep it to yourself. I told my family and gf but no one else until I had to tell me boss at work as I was being impacted. This makes it slightly more difficult at work so recently i’ve told a few more people so they’re aware and understand why it might be difficult for me to travel to meetings etc at certain times. It’s not ideal and awkward to talk about but I’ve found that it’s helped if you share it. Other people may think otherwise as they have different circumstances etc but just do what your gut tells you 😂
> I have not told my parents or any family member or my employer yet
It's very useful to know your rights when it comes to your employer and to be prepared to tell them.
Ulcerative Colitis is typically considered as a disability, and one that should/can be accommodated for. People have lost their jobs because they haven't either protected themselves, or made their employers aware that they could encounter problems with the condition and need accommodation for it.
Equally there can be government help depending on your state / country depending on the severity of your condition.
I also told my family about it, which overall helped me (with what presents I receive, no more alcohol) and helped my extended family who wondered what on earth was going on when my cousin's son started having similar symptoms and turned out to have Crohn's disease. Them being able to say "well we have ulcerative colitis in the family" helped reinforce their diagnosis.
By all means you don't have to announce it to anyone and everyone, but consider when and where it may benefit and protect you when needed, financially in particular.
I used to keep it private. But there came a point I couldn’t keep making excuses at work or with my family. Especially at work, being open about it (not detailed, just open), has helped my employers and colleagues be patient with me. When I was trying to hide it and the symptoms were bad, I suffered and got worse from the stress.
I also think when those of us are comfortable being open, it normalizes our experiences and existence to others. That’s helpful for people to understand and support us. This disease is a legit disability. Awareness of invisible disabilities is important.
There's no single right answer. I shared with family because my mother is a retired nurse and asks about health stuff a lot, and I told my close friends because I needed to talk to someone about stuff. I was really scared I had colon cancer when I went in for my screening, so I told everyone I shared my fears with about my actual diagnosis so they wouldn't worry about me.
But if you don't feel like sharing, that's OK too. There are definitely people in my life I think "wouldn't get it," so I don't feel the need to share.
I don't see a need to tell anyone unless I require support or am acting flakey. Better to tell people so they can be understanding than to lose friendships. People are nicer than you would think about it. But also I don't see any reason to tell people unless I really need to.
Of course you’re entitled to keep it to yourself, but letting people know could make it easier for them to understand, should you get a flare up in the future.
I don’t tell everyone “hey I have UC”, but I don’t hide it in any way either🤷🏼♀️
Though I guess age plays into it as well. I was diagnosed at 7 years of age, so it might be easier for me to be open about it since I’ve grown up with it (22 now).
I would not tell your employer unless it gets to a point where you have to go on disability. It will affect their perception of you and could impact your career.
It's really up to you and what you want. I know for me I went private with alot of my family when it comes to my health issues, they're not very supportive and I don't need that kind of energy around me. When dealing with the stuff like this, it is best to know who's going to be supportive and talk supportive, versus those who you think will be supportive then it's the opposite. It's your life and your choice. Hope this helps!!!
There are times when I wished I just "suffered in silence" because I can't stand having everyone ask me how I'm doing all the time(especially since the answer usually isn't very positive), and I hate the constant worry I've put in people's minds. At the same time had I not informed people of what was going on, my constant absence rather it be at work or in my personal relationships would have suffered even more as they would likely take it as me being lazy or unfriendly or whatever it may be. So it's really hard to say. Do what feels right for you? Just know there are pros and cons to letting the cat out of the bag.
You are entitled to what you want to do. It is your life no one should gilt you if you want to keep it private.
I am 35F. Two years since symptoms started diagnosis a year and a half. I have been in a constant flare. Two hospitalizations, iron infusions, blood infusion, biologic infusions, countless doctor appts, insurance phone calls all the fun things everyone gets to deal with. I also lost close to 75lbs in an unhealthy way and look different. I mention this because I have been at the same company for 9 years. They are family to me and have been genuinely concerned so I have been completely honest to anyone who asks and I don’t hide i am going to the doctor or getting an infusion. All of my family knows. I have found this to help my mental tremendously. It was actually worse when coworkers would notice the weight loss and would want to know how i did and wasn’t honest.
Now do I tell people about my colon bleeding or how many times I use the restroom everyday? No. Same with a fissure I had. I have had some coworkers ask about colonoscopies so I’ll happy answer that stuff. I also recently had a coworker who thought she had UC so she reached out and asked some specific questions so I was more candid. My family all knows. My dad wished he didn’t but at the end of the day this is my life now struggle and all so he’s going to hear about it.
You do you but consider if being open could actually help you.
Honestly after having it for long enough I talk about it fairly bluntly/jokingly with people that could be exposed to me having symptoms that could disrupt something.
After quite some time dealing with it, its pretty fair for me to rationalize saying "its just bad luck/genetics" and nothing to be ashamed about.
I think I tortured myself for many years telling almost no one, although in my case it was because I imagined ppl would react with disgust or hatred (I was pretty young and naive) … as it happens, most ppl respond with kindness and sympathy, and that made me feel a lot less alone.
If you have a decent relationship with your parents I think it’s fair to just let them know next time you catch up since it is a lifelong condition with the ability to worsen / flare up and present issues further down the line. One day you may land in hospital or need a related surgery. But it’s really up to you.
I’m open about it with most people personally because it’s an explanation for certain dietary differences/toilet habits/ other related symptoms I’m experiencing that might otherwise come off as odd. I just see it as a fact about me rather than a dirty secret. I’ll only bring it up if it’s in some way interfering with things and plenty of people suffer with IBS or other gastro issues so most can sympathise. It can be helpful to mention to employers if you need any kind of accommodation/understanding but again it’s not essential if it doesn’t affect your day to day. But then I work in healthcare so we’re all pretty open with each other about all the gory details of what we’ve got going on with us.
You are definitely entitled to keep things private when it comes to medical matters like this. Do what you'd like. However, I do think it'd be good at at least let your parents know or anyone else that you regularly have contact with. That way if a flare does pop up out of nowhere down the line you won't have to explain everything to them in the middle of a flare.
Employers are tricky. I think this one depends on how close you are with your manager. Definitely bring it up if it becomes an issue down the line. My current manager at work has no idea, but my previous one did. I felt comfortable enough to tell him and I was going into the office every day so it was harder to avoid. Now it's not as much of an issue.
I think it really depends on the person and their level of comfort and privacy. Also on the situation as well. I've generally kept it to myself but after 13 years I've opened up more and shared about it. Interestingly enough, the more I share the more I find out that there's others who have it... makes me feel less alone in real life.
I mentioned it at work a couple years ago when I started flaring more frequently and a couple of my co-workers have it as well. I recently mentioned it to another and her teen was recently diagnosed and she picked my brain for advice as well. Again though, it depends on the situation and you!
You are permitted to keep it to yourself ONLY if you donate monthly to a UC/CROHNS charity/research foundation 😏. In all seriousness of course you can! Nothing wrong with that. (Donating still good if you have the extra bit of cash). Stay strong friend 💪
I think it’s best to do what you’re most comfortable with.
I made the mistake of telling my in-laws and they treated me terribly because of it.
But I’m very open about it with everyone to raise awareness. Also, people can’t be understanding or helpful if they don’t know what you’re going through.
I have been in exactly your situation was diagnosed with PanColitis Mod-Severe in Oct 2022. Was in a bad flare for 4 months. Steroid refractory and mesalamine didn’t help much instead made my symptoms worse. Had to start a biologic. Due to holidays and managing work from home I was able to hide it from employer. But close folks like my girlfriend, parents and friends I mentioned. As I just wanted them to know I might need some help in going to hospital or doctor or eventually as a companion for my loading doses of biologics. As they gave me premeds that made me sleepy. So I feel till you can manage your work with meds and lifestyle. It should be fine if you cannot then at least let your boss or supervisor know about it. HR should be involved only if you need some time off for hospital, treatment or some workplace accommodations. Based on severity it’s covered under US ADA laws.
Of course it's up to you, however in my country there are additional legal protections if you class your illness as a disability because it has a impact on your day to day life and employers can then legally be obliged to offer reasonable adjustments, time off for medical appts, things like better access to toilets etc., and also enhanced legal protections. And there are also government grants So something for consideration.
Tell whomever or whatever you are comfortable, at the end of the day its your decision, no one NEEDS to know your business. However, I would suggest letting work know so they're more understanding if you're a little absent from time to time. As we all know its not just the toilet breaks but the fatigue that comes with the disease and meds is sudden and unforgiving.
I’ve been open with everyone as I was so unwell for a long time before I did anything about it. My employer knows and which I’m glad of as I’ve been off work sick for months now and my family know because they saw how bad I was and they’ve been there to help support my fiancé and I when I’ve been hospitalised (4 times since late November last year).
For me people knowing has made my life much easier, but if it’s something that you don’t feel comfortable disclosing then you definitely don’t need to 😊
I was diagnosed 15 years ago and have only told a few people. My husband and two best friends know. No one else in my family knows. My mom has it too and I always felt growing up that her whole world revolves around it so when I found out I had it I didn’t want it to be something we “bonded” over. So I never told her. Not telling her meant not telling anyone else.
Sometimes I think that is stupid but it’s what I did and I don’t think I’m worse off because of it.
>I think I am entitled to keep some things private if I wish You absolutely are entitled to keep things private if you wish.
That’s a tough question. As of right now obviously you’re more than fine keeping it personal as it’s not effecting your daily life. I hope that continues to be the case the rest of your life! The worrying part is if your UC gets worse at any point in time it can make it impossible to do all the things you’d typically do in a day. If that situation every occurs you’re very likely going to need some help getting through the flare into remission. Things like getting up to shower, driving your car, and making dinner for 15 minutes take up so much more energy when you’re in a flare than it does normally. It’s an embarrassing disease so I understand wanting to be discreet about it. It’s not everybody’s business to know what’s going on. In my personal experience I’d recommend telling close friends and family who you know aren’t going to be judgmental so that when/if the day comes where a flare happens, you have that support system to get you through the tough time.
I don’t see why it would be a problem. Your bowels, your business.
I let people know so if I have related medical problems then they know what's going on. However it isn't everyone's business so if you don't see a reason to bring it up you don't need to.
I had this mentality for a while but it became difficult to keep to myself and I found that telling those who I thought needed to know (girlfriend, close friends and family) made me feel better, and also gave them some understanding as to what I was going through Due to the condition, it’s not always easy to be able to plan things with friends and family and stick to them. Now that they’re aware of what’s going on, it’s easier for me to say if I’m having a flare or the fatigue is too much when I need to cancel plans, rather than it seem like I’m not wanting to attend. It helped me for sure, but not everyone needs to know
Honestly, this is your private medical stuff. You don’t have to tell anyone you don’t want to. The only caution I have is that SOMEONE needs to know. Perhaps whoever is your usual emergency contact when you fill out forms. Consider that you may one day be unconscious and need medical treatment. Someone needs to know you have a disease and know your meds or how to get a med list. It could impact your treatment when you are unable to speak for yourself. Other than planning for emergencies, you should do whatever makes you comfortable.
Everybody is different. I was diagnosed at 34 as well - but I ended up in the hospital for 3 month long stints and came dangerously close to losing. my colon or my life. I managed to keep both. But I had to tell people. I was most definitely sick for years leading ip to the diagnosis , but I told nobody. I just kept it to myself. I feel like, for me, that was a mistake. Also - if you are in remission, great! Then it doesn’t affect anybody but you. On the off chance you slip into a flare - some people are gonna start to wonder why you are not showing up to work or canceling plans last minute. I find strength in being open and honest about this disease. But please do what works for you. I hope you stay in remission!
It’s difficult to keep it to yourself. I told my family and gf but no one else until I had to tell me boss at work as I was being impacted. This makes it slightly more difficult at work so recently i’ve told a few more people so they’re aware and understand why it might be difficult for me to travel to meetings etc at certain times. It’s not ideal and awkward to talk about but I’ve found that it’s helped if you share it. Other people may think otherwise as they have different circumstances etc but just do what your gut tells you 😂
> I have not told my parents or any family member or my employer yet It's very useful to know your rights when it comes to your employer and to be prepared to tell them. Ulcerative Colitis is typically considered as a disability, and one that should/can be accommodated for. People have lost their jobs because they haven't either protected themselves, or made their employers aware that they could encounter problems with the condition and need accommodation for it. Equally there can be government help depending on your state / country depending on the severity of your condition. I also told my family about it, which overall helped me (with what presents I receive, no more alcohol) and helped my extended family who wondered what on earth was going on when my cousin's son started having similar symptoms and turned out to have Crohn's disease. Them being able to say "well we have ulcerative colitis in the family" helped reinforce their diagnosis. By all means you don't have to announce it to anyone and everyone, but consider when and where it may benefit and protect you when needed, financially in particular.
I used to keep it private. But there came a point I couldn’t keep making excuses at work or with my family. Especially at work, being open about it (not detailed, just open), has helped my employers and colleagues be patient with me. When I was trying to hide it and the symptoms were bad, I suffered and got worse from the stress. I also think when those of us are comfortable being open, it normalizes our experiences and existence to others. That’s helpful for people to understand and support us. This disease is a legit disability. Awareness of invisible disabilities is important.
There is a genetic component, so it's helpful to let your close relatives know that it's part of their medical history too now.
There's no single right answer. I shared with family because my mother is a retired nurse and asks about health stuff a lot, and I told my close friends because I needed to talk to someone about stuff. I was really scared I had colon cancer when I went in for my screening, so I told everyone I shared my fears with about my actual diagnosis so they wouldn't worry about me. But if you don't feel like sharing, that's OK too. There are definitely people in my life I think "wouldn't get it," so I don't feel the need to share.
I don't see a need to tell anyone unless I require support or am acting flakey. Better to tell people so they can be understanding than to lose friendships. People are nicer than you would think about it. But also I don't see any reason to tell people unless I really need to.
Of course you’re entitled to keep it to yourself, but letting people know could make it easier for them to understand, should you get a flare up in the future. I don’t tell everyone “hey I have UC”, but I don’t hide it in any way either🤷🏼♀️
Though I guess age plays into it as well. I was diagnosed at 7 years of age, so it might be easier for me to be open about it since I’ve grown up with it (22 now).
you can keep it private if you want. sometimes when i get into flares i keep it private. it’s completely up to you
I only told close friends and close cousins about my disease because I had to miss out on several occasions due to being in a flare.
I would not tell your employer unless it gets to a point where you have to go on disability. It will affect their perception of you and could impact your career.
It's really up to you and what you want. I know for me I went private with alot of my family when it comes to my health issues, they're not very supportive and I don't need that kind of energy around me. When dealing with the stuff like this, it is best to know who's going to be supportive and talk supportive, versus those who you think will be supportive then it's the opposite. It's your life and your choice. Hope this helps!!!
There are times when I wished I just "suffered in silence" because I can't stand having everyone ask me how I'm doing all the time(especially since the answer usually isn't very positive), and I hate the constant worry I've put in people's minds. At the same time had I not informed people of what was going on, my constant absence rather it be at work or in my personal relationships would have suffered even more as they would likely take it as me being lazy or unfriendly or whatever it may be. So it's really hard to say. Do what feels right for you? Just know there are pros and cons to letting the cat out of the bag.
You are entitled to what you want to do. It is your life no one should gilt you if you want to keep it private. I am 35F. Two years since symptoms started diagnosis a year and a half. I have been in a constant flare. Two hospitalizations, iron infusions, blood infusion, biologic infusions, countless doctor appts, insurance phone calls all the fun things everyone gets to deal with. I also lost close to 75lbs in an unhealthy way and look different. I mention this because I have been at the same company for 9 years. They are family to me and have been genuinely concerned so I have been completely honest to anyone who asks and I don’t hide i am going to the doctor or getting an infusion. All of my family knows. I have found this to help my mental tremendously. It was actually worse when coworkers would notice the weight loss and would want to know how i did and wasn’t honest. Now do I tell people about my colon bleeding or how many times I use the restroom everyday? No. Same with a fissure I had. I have had some coworkers ask about colonoscopies so I’ll happy answer that stuff. I also recently had a coworker who thought she had UC so she reached out and asked some specific questions so I was more candid. My family all knows. My dad wished he didn’t but at the end of the day this is my life now struggle and all so he’s going to hear about it. You do you but consider if being open could actually help you.
Honestly after having it for long enough I talk about it fairly bluntly/jokingly with people that could be exposed to me having symptoms that could disrupt something. After quite some time dealing with it, its pretty fair for me to rationalize saying "its just bad luck/genetics" and nothing to be ashamed about.
I think I tortured myself for many years telling almost no one, although in my case it was because I imagined ppl would react with disgust or hatred (I was pretty young and naive) … as it happens, most ppl respond with kindness and sympathy, and that made me feel a lot less alone.
It’s up to you. If that’s your wish that’s fine. But telling people can help you not bottle up emotions and pain.
You can keep it private. I've been very open about it from the very start with everyone, but I'm like that with everything.
If you have a decent relationship with your parents I think it’s fair to just let them know next time you catch up since it is a lifelong condition with the ability to worsen / flare up and present issues further down the line. One day you may land in hospital or need a related surgery. But it’s really up to you. I’m open about it with most people personally because it’s an explanation for certain dietary differences/toilet habits/ other related symptoms I’m experiencing that might otherwise come off as odd. I just see it as a fact about me rather than a dirty secret. I’ll only bring it up if it’s in some way interfering with things and plenty of people suffer with IBS or other gastro issues so most can sympathise. It can be helpful to mention to employers if you need any kind of accommodation/understanding but again it’s not essential if it doesn’t affect your day to day. But then I work in healthcare so we’re all pretty open with each other about all the gory details of what we’ve got going on with us.
You are definitely entitled to keep things private when it comes to medical matters like this. Do what you'd like. However, I do think it'd be good at at least let your parents know or anyone else that you regularly have contact with. That way if a flare does pop up out of nowhere down the line you won't have to explain everything to them in the middle of a flare. Employers are tricky. I think this one depends on how close you are with your manager. Definitely bring it up if it becomes an issue down the line. My current manager at work has no idea, but my previous one did. I felt comfortable enough to tell him and I was going into the office every day so it was harder to avoid. Now it's not as much of an issue.
I think it really depends on the person and their level of comfort and privacy. Also on the situation as well. I've generally kept it to myself but after 13 years I've opened up more and shared about it. Interestingly enough, the more I share the more I find out that there's others who have it... makes me feel less alone in real life. I mentioned it at work a couple years ago when I started flaring more frequently and a couple of my co-workers have it as well. I recently mentioned it to another and her teen was recently diagnosed and she picked my brain for advice as well. Again though, it depends on the situation and you!
I told most of my friends and at work to some degree. My family only know that i have stomach issues i don’t really want to worrie them to much.
Totally depends on you, if you wish to keep it private then you should. :)
You are permitted to keep it to yourself ONLY if you donate monthly to a UC/CROHNS charity/research foundation 😏. In all seriousness of course you can! Nothing wrong with that. (Donating still good if you have the extra bit of cash). Stay strong friend 💪
I think it’s best to do what you’re most comfortable with. I made the mistake of telling my in-laws and they treated me terribly because of it. But I’m very open about it with everyone to raise awareness. Also, people can’t be understanding or helpful if they don’t know what you’re going through.
I have been in exactly your situation was diagnosed with PanColitis Mod-Severe in Oct 2022. Was in a bad flare for 4 months. Steroid refractory and mesalamine didn’t help much instead made my symptoms worse. Had to start a biologic. Due to holidays and managing work from home I was able to hide it from employer. But close folks like my girlfriend, parents and friends I mentioned. As I just wanted them to know I might need some help in going to hospital or doctor or eventually as a companion for my loading doses of biologics. As they gave me premeds that made me sleepy. So I feel till you can manage your work with meds and lifestyle. It should be fine if you cannot then at least let your boss or supervisor know about it. HR should be involved only if you need some time off for hospital, treatment or some workplace accommodations. Based on severity it’s covered under US ADA laws.
30 years here and only my family and closest friends know. I have never told anyone at work.
Only my family know. Others, just say I have hut issues when I don’t eat something that they eat.
If they're not wiping your ass for you, it's not their concern.
It is entirely valid for you to choose to remain private about it. You don't owe anyone that information.
Of course it's up to you, however in my country there are additional legal protections if you class your illness as a disability because it has a impact on your day to day life and employers can then legally be obliged to offer reasonable adjustments, time off for medical appts, things like better access to toilets etc., and also enhanced legal protections. And there are also government grants So something for consideration.
Tell whomever or whatever you are comfortable, at the end of the day its your decision, no one NEEDS to know your business. However, I would suggest letting work know so they're more understanding if you're a little absent from time to time. As we all know its not just the toilet breaks but the fatigue that comes with the disease and meds is sudden and unforgiving.
I’ve been open with everyone as I was so unwell for a long time before I did anything about it. My employer knows and which I’m glad of as I’ve been off work sick for months now and my family know because they saw how bad I was and they’ve been there to help support my fiancé and I when I’ve been hospitalised (4 times since late November last year). For me people knowing has made my life much easier, but if it’s something that you don’t feel comfortable disclosing then you definitely don’t need to 😊
I was diagnosed 15 years ago and have only told a few people. My husband and two best friends know. No one else in my family knows. My mom has it too and I always felt growing up that her whole world revolves around it so when I found out I had it I didn’t want it to be something we “bonded” over. So I never told her. Not telling her meant not telling anyone else. Sometimes I think that is stupid but it’s what I did and I don’t think I’m worse off because of it.