The funny name

Possibly the most frustrating thing about having ankylosing spondylitis is dealing with the fact that hardly anyone has heard of the disease, unless they have a medical background or know someone else who has it. This means extra work on our part: whenever we have to tell people that we have AS, we also have to explain what AS is. And we have to be careful about it. We have to make sure that the person we're telling doesn't simply brush it off as a bout of back trouble -- at least two of my former supervisors did that -- that we can simply suck up and deal with. So we have to offer some detail and emphasize the severity of the condition.

At the same time, it gets pretty tiring after a while -- as if we weren't tired enough already -- to have to explain it repeatedly. It would be so nice, don't you think, if we could simply say, "Oh, I have ankylosing spondylitis," and be understood -- without having to fight any preconceptions about back pain or autoimmune diseases, without having to explain why we're not seeing the chiropractor or taking glucosamine or to fend off other helpful-but-useless advice. It'd be nice, but I don't think it's going to happen. It's not that enough of us don't have it; it's just not spectacular or scary enough.

So we're going to have to put up with a certain amount of ignorance about the disease. After 7½ years, I'm used to confused or nonplussed reactions. What I'm not used to is laughter -- which is what I got for the first time on Friday.

Ask MetaFilter is a subsection of MetaFilter, a community blog I've been a member of for more than three years: in this subsection, we can ask each other for advice on just about any subject. On Thursday night a member asked a question about pillows; since I've been using a memory-foam pillow since my diagnosis, I added my two cents' worth, mentioning en passant that I had AS. Without mentioning what AS was, because (I thought) it wasn't germane to the discussion, and explaining it would have taken up my time and their attention.

What followed has since been deleted, but I took a screenshot:



When I read this on Friday morning, I couldn't believe what I saw -- after all, you don't usually see people laughing at cripples nowadays. So I did what everybody does at MetaFilter when their feelings are hurt: I took the offender to MetaTalk, where such issues of conduct and etiquette (as well as other site issues) are thrashed out. And there I got an even bigger surprise:

While people generally agreed that Pretty_Generic was being a dick, they had to concede that "ankylosing spondylitis" was a funny name. (And it turned out that he was laughing at the name, not at me.) One person even chided me for not explaining the disease; otherwise I should expect sniggers because of the funny name.

I was floored. Not once in the nearly seven years since I first heard the name have I ever had that reaction. It never even occurred to me that the name sounded funny. (Considering that I'd been in constant pain for at least six months by the time I'd first heard it, it's no surprise that I saw no humour in the name.) So I wasn't exactly prepared for it.

Fortunately other people thought that this line of thought was bollocks. flashboy made the excellent point that while it's one thing to giggle over a funny name in a pub, it's another thing to make jokes about a disease's name to someone who suffers from it. This is something I'd have thought utterly obvious, but not, apparently, to everyone.

After 7½ years of life with AS I've mellowed a bit: I'm not nearly as defensive and angry about it as I once was. Still, it's a safe bet that if someone laughed about my disease to my face, I'd probably tear out his larynx.

If nothing else, it looks like I'll have to keep explaining the disease for all comers, or at least supply a link every now and then. As a result of this fracas, I've added some links to the sidebar, under "About Ankylosing Spondylitis," to pages that describe the disease. I've also added a list of minor celebrities with the disease -- because, as we all know, diseases only exist if famous people suffer from them. (Sigh. Just one A-lister, and my life would get a lot easier.)