Social Life and Autoimmune Disease

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Having autoimmune disease can be difficult to navigate in terms of relationships with friends and family.  People see illness in black and white terms. You have cancer or you are in remission.  You have the flu today, but you are expected to be better in two weeks and return to normal activity. When I first started to experience the cascade of symptoms which would lead to a diagnosis of autoimmune disease, I still tried to participate in all the standard social activities with family and friends.  I wanted everything to be OK – I wanted to be OK.  I felt ashamed that I was not well so I glossed over what was happening to me.  I didn’t have a diagnosis yet so it was hard to explain to other people. How can you justify your illness when no one knows what is actually wrong with you?

When my health declined rapidly, I had no choice but to tell everyone that I was sick.  I couldn’t work, go to school, or participate in family and social events all together.  There was no more pretending that I was OK.  My husband went to mandatory social occasions without me and served as my impromptu spokesman explaining why I could not attend and how things stood with my health and my eventual autoimmune diagnosis.  He lovingly protected me from the outside world when I was too sick to be able to participate in it. Things continued on like this for almost two years with me at home ill and in pain until I found a doctor who diagnosed and started to treat me.

With my health thankfully improving, I am presented with the new challenge of how to negotiate beginning to socialize again?

When I make plans with people, I always make the caveat that I might have to cancel if I am not feeling well. Even with an explanation about autoimmune disease and how symptoms can fluctuate daily, weekly, or monthly, the truth is that people can get annoyed when I do have to cancel.  But that is a risk I have to take or I would never be able to socialize.

On the other hand I have found that when I have recently been up to seeing friends or previous work contacts, people keep saying over and over again how good I look or how much better I look.  They haven’t seen me in a long time and I think they expect me to look horrible or they just don’t know what to expect, what to say, and they are uncomfortable.  It can be a difficult to hear because it feels like my illness has been negated -- like it is not tangible or real.  I have gotten used to hearing this line and sometimes I want to delve into an explanation about invisible illness and why you can’t see autoimmune disease, but usually I control myself.

But here comes in the next challenge -- expectations.  Once I have been up to and had a good evening socializing with friends, it seems that I am expected to be able to participate again in whatever event comes next.  People begin to see me as “better”.  In a way I should take it as a complement, my friends want to spend time with me and to see me more.  There could be worse things.  To me, it feels like pressure to do things that I might not be well enough to do.  Even with my health on a better trajectory at the moment, I still have to be very careful and there are real limits to how much I can do without overtaxing myself.

It is certainly a catch-22 in my mind -- make plans and risk having to cancel sometimes at the last minute or showing up, doing well, and having people think you are better and can do just about anything.  Even for my friends who are very supportive, it is clearly confusing how I can look good one day and then they might hear how badly I am doing the next.  

These are good challenges to have now that my health is more stable, but that does not make them any less  tricky and sticky to navigate.  What are your strategies for managing others expectations and negotiating your social life?