If You Have an Autoimmune Disease, Do You Tell People?

I think the key is to only tell people when it's relevant. Otherwise it sounds like you're playing the victim or trying to garner sympathy.

If you've been asked to do something that you know you won't be able to manage, and you try to politely tell them no but they keep pressing, you can simply tell them that you have a medical issue that prevents you from always being able to participate in things that are physically strenuous (or however you want to phrase it).

I don't know what to tell you to do, but I just wanted to share that I understand your question. My husband is disabled in a not visible way that seriously limits his physical activities. No one knows about it unless we tell them, and even then, they still don't understand how it limits what he can do and/or they keep forgetting, and I have to keep reminding them... "no, he can't help you with that", "please walk slower, we can't keep up with you," etc. Even my brother and his wife (after years of my husband's disability) still don't quite get it. They want to, they just can't fathom it, I guess.

So, like you, I always wonder, should I tell people? Should I keep reminding them? No one minds when I do tell them and they are always gracious about it, but I always wonder if they get tired of hearing about it and think I am trying to get attention.

I guess my three pieces of advice are this...
1. I think people really do care.
2. No matter what you tell them, they probably won't really get it and will need constant reminders.
3. If you can, try to find a support group, maybe there's an online support group for people with autoimmune disease and they can give you good advice regarding the social aspects of dealing with it.

I'm sorry you have this illness. I can't imagine. Always remember to turn to God for strength and comfort. He cares always.

No need to go advertising it, but it's ok to tell/share with someone. Especially if it is affecting your day to day functions. Give people the benefit in making the judgment call on how to handle it.

Only if it's relevant to the people I'm dealing with. And if it comes up in a topic, I might add my 'me too' 2 cents, usually if the discussion is geared towards how to cope best. I would not mention my health issues in a broadcasting way, and only in a personal moment.

I personally think it gives people a much needed perspective as I tend to 'hit a wall' with my health....and it's simply over for me...there is no finishing a project, or the dishes, or a conversation... or I leave a party early..I've even left grocery carts full of food, because I'll be 'done'...and I must sit down right then, not later. In those public scenes, I say nothing...I just leave.....and now I know why I see full grocery carts full sitting there...I think it's someone just like me who had to exit, or an expectant mama' who's water broke.

If your fatigue is obvious and noticeably and adversely affects your work environment, then I think your boss and very close co-workers would benefit knowing you have a medical condition. I would rather there be a level of understanding about your limitations than rumors of what's wrong with her.

I have hashimoto's. I only tell people if the subject were to come up. Lately it has more often because I have recently found out that my 6 year old daughter also has it, and then my next door neighbors 6 year old daughter also has it and so we were talking about it. But, I don't normally go out and tell everyone I know about it. if you don't feel comfortable telling anyone, you don't have to. It's none of their business.

With my own issues I only tell people I trust and when the issues I have interfere with my immediate activities and the people involved. Otherwise, I wave it off with, "I'm sorry, I'm having a difficult day. If you could just give me a moment I would appreciate it."

*A mom with Fibromyalgia, that affects autoimmune as well as muskuloskeletal

I would tell people on a 'need to know' basis.

its up to you if you want to tell others its ones personal decision plus you don't know what there thinking cuz your not in there head when you tell them n there reaction is only the way they react to news they hear about good or bad.