It sucks having an autoimmune disease. It sucks having it be in remission and it sucks trying to find the balance between abject fear of relapse and a normal, healthy life. It sucks having a rare autoimmune disease because no one really understands how much it sucks.
There was an article in Self Magazine's March 2007* issue that said it very nicely: ...with severe autoimmune illness, you get to go through all the official cancer crap without getting any of the cancer credit. There is no pretty ribbon to adorn your lapel. You do not get a story line on Sex and the City, nor do you rock out at the Grammys. You cannot purchase lovely pink products to help find a cure.
Not to belittle people who have had cancer - it's not easy dealing with that either - but do you know how many time I have wished that I had cancer instead of Wegener's? It's not easy, but it's much easier for cancer people because they have a gigantic support system and publicity and just tons of people they can relate to and share their experience.
I know that makes me sound like a terrible person, but it's really true. Cancer survivors also have the joy of not worrying if every cough, headache, nosebleed, earache or joint/muscle ache is a symptom of their cancer coming back. I do. It sucks.
A friend of mine pointed out the other day that I let Wegener's Granulomatosis be a fairly major thing in my life (well, no shit!) and that I should try to make it influence me less or not at all. Because whether or not I have a relapse is out of my control, he essentially said I should ignore the disease. His sister has had cancer and he used her as an example of how one should cope. He actually kind of pissed me off because he implied that I was a slave to WG and that I should really just be passive about it.
That's not really a plausible idea. I have to pay very close attention to any symptoms that might indicate a relapse because, while I can't control if a relapse happens, I can control how soon it's diagnosed. Catching a relapse early could save me from being on dialisis for the rest of my life or keep my nose from collapsing completely. I've found a few support groups online too. It's comforting to have found people who went through something similar, and it's helpful to be aware of what I can maybe expect if I do have a relapse. Not actively dealing with WG is likely to be more detrimental than not.
The truth is I don't really let it have that much influence on my life. If I were to really let Wegener's control my life, I would be a total hypocondriac and would never do anything but worry about it. I do very normal things for a person my age. There are a few things I don't do because they would increase the risk of me getting sick, but they're kind of stupid things to do anyway. I don't even talk to most of my friends about it because right now, it's not a really big deal. Occasionally they'll ask me about it, and I'll tell them, but I seldom bring it up.
Blah! I promise my next blog will be happy. This one and the one before are a bit ponderous.
*I couldn't find a link to the Self article itself that didn't require some sort of password. I've posted it as a comment though (it's kind of long so I don't want to put it on the main page). I highly recommend reading it; it's a great article.