Having an autoimmune disease means that many things change. Just because you can't see the changes doesn't mean they aren't real.
Most people don't understand much about autoimmune diseases and their effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand ...
... These are the things that I would like you to understand about me before you judge me...
Please understand that having an autoimmune disease doesn't mean I'm not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome to do so.
Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing that five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either.
Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything that I do.
Please understand that the effects of autoimmune diseases are variable. It's quite possible (for me, it's common) that one day I am able to walk to the bathroom and back, while the next day I'll have trouble sitting up. Please don't attack me when I'm worse by saying, "But you did it before!" If you want me to do something, ask if I can and I'll tell you.
Similarly, my autoimmune diseases may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
Please understand that "getting out and doing things" does not make me feel better, and can often make me worse. Autoimmune diseases may cause a secondary/reactive symptom like vertigo, nauseousness or tremors. Telling me that I need some fresh air and exercise is not helpful and not appreciated - if I can do it I will.
Please understand that if I say I have to sit down/lie down/take these pills or shots now, that I have to do it right now - it can't be put off or forgotten just because I'm doing something else more exciting. Autoimmune diseases do not forgive their victims easily.
Please understand that I can't spend all of my energy trying to get well from my incurable autoimmune diseases. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. The important part of having autoimmune diseases/disabilities is coming to the realization that you have to spend energy on having a life while you're sick/disabled. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with an autoimmune disease/disability.
If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought; and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different autoimmune diseases and disabilities. If something worked we would know about it.
If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don't expect me to rush out and try it. I might not even reply. If I haven't had it or something like it suggested before, and it sounds reasonable, I'll probably take what you said and discuss it with my doctor.
Please understand that getting better from an autoimmune disease doesn't mean being cured and doing all the things I did before, getting better from an autoimmune disease might not happen at all. People with autoimmune diseases have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.
Please understand that my grief is not linear, this monster disease is not linear either. I will go through times of anger, depression, isolation, denial, etc...Please be patient with me.
I depend on you - people who are able-bodied - for many things.
BUCHANAN (n.d), "But most importantly, I need you to understand me".
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