You Only Look as Good as You....Look

Something has been on my mind for a little while. I recently was sent a scleroderma newsletter that had a link to a "Silent Illness" support group. I'm wondering 'what the heck is silent illness and what does that have to do with me?' Turns out, silent illness is any illness or disorder that is not really visible on a patient.

I bring this up because I've had the opportunity to attend a couple of weddings and see some old friends recently. Many haven't seen me since I was diagnosed. The response has been very positive - mostly along the lines of "You look great!" And, you know, they're....right. While I'm convinced that everyone who sees me sees my patchy thick skin, red spots and stiff hands, they really don't - not at first glance anyway. I should point out here that I'm a little vain. Not in the "I think I'm so hot" sense of the word - more in the "I don't want to look like an ugly troll" sense. So there is a comfort in hearing that my appearance still passes muster.

There is a flip side here, however. Because I don't really look all that sick, is there a mindset in people that maybe I am not all that sick? No one has said or done anything to make me feel that way, but I can't help but think it's human nature. When I attend social events, I'm just me laughing and enjoying present company. Who wouldn't think - "She's fine!"? Usually, what happens afterwards is that I go home and sleep for two hours. Those weddings I went to? Slept pretty much the whole next day. Now I have those pesky medicinal side effects to deal with which - as of today - includes vomiting!

The dichotomy became clear when I read an email from a scleroderma patient in another part of the country. The disease has affected her mostly in the skin - though not her organs. She tells me her skin is very dark and tight - I'm sure there's no question that she looks pretty gosh darned sick. Whereas I have significant lung and GI involvement but look pretty gosh darned OK. Weird.

I know several people with other "silent illnesses" - Crohn's Disease, diabetes, asthma, lupus, depression, fibromyalgia, even cancer to name a few - and I have to admit before I was in the same boat, I didn't really "get" the seriousness of what some of them are going through. I know, I know - I shouldn't get wrapped up in what other people might think. It just seemed like everything came together on this point at once - so instead of keeping it silent (see what I did there? silent? haaa!), I thought I'd make a little observation. Too bad this chronic disease stuff doesn't come with some kind of handbook...