Ankylose This! Living with Ankylosing Spondylitis

Sunday, December 05, 2004

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.)

Comments on this post

  • Not to add insult to injury, but I have a contribution.

    I'm a Materials Scientist who studies Kendo, with Ankylosing Spondylitis.

    Get ready.

    "You do WHAT, study WHAT and have WHAT?"

    And you thought just the disease was bad. I'm a walking invitation to total incomprehension.


    Materials Science is the profession focused on engineering applications of engineering materials. Metals, plastics and ceramics etc. I study and come up with ways to apply these materials to engineering problems. We're probably the least well known engineering field because we are the newest one (originated in the 1970's).

    Kendo is literally the "way of the sword." Japanese style fencing. A martial art that has it's roots in Kenjutsu, ancient Samurai sword techniques.

    And I think you guys are up to speed on AS.

    I hope I haven't offended anyone?


    Posted by Blogger Outrider (2/17/2005 4:32 PM)  

  • I dont even mention the name... if I need to tell people I just say I suffer from a degenerative rheumatic condition of the spine. Makes them cringe... at least I dont have to explain anything after that one.

    What I have always found most difficult is that I can be crippled one day and fighting fit the next... explain that! Or fighting fit one moment and not able to get up and walk the next...

    Laughs I have never had however, but most people don't take my AS seriously because of that. Not even my partner with whom I have been for 10 years. Maybe I dont wince enough?

    Posted by Blogger Hanneke (5/18/2005 2:47 PM)  

  • I have suffered AS for about 6 years and I don't think it is anything to laugh about. The name is rather unfortunate and given that it is so little known, perhaps the very name contributes to the widespread ignorance about it. Many of us are probably embarassed os saying it or can't be bothered to explain, as you said.
    I prefer not to make any fuss about AS in front of other people mainly because I don't want to be pitied, but I must admit the name sounds maybe not funny but extravagant and a real mouthful! Having said that, it sounds even quirkier in Spanish and I have myself laughed about the name when explaining the condition to friends.

    Posted by Anonymous lejah warrior (5/06/2008 3:39 PM)  

  • I have recently been researching a great deal about AS. I have not been diagnosed with this disease due to no health insurance, (but looking into it). I have talked to many friends and family members and your right no one has heard of this disease and look at me like i am crazy. Little do they know that this is on my mind all the time. I first got diagnosed with uveitis and after that symptoms became worse all over my body. My feet and lower back have always been bad throughout the years sometimes dibilitating, but I am a bartender and always have blamed my job for those ailments. It was when my eyes went haywire things like my shoulders, upper back, and neck can get extremely painful. I just wish I could find out for sure so I won't feel like I am going crazy.

    Posted by Anonymous Anonymous (10/07/2009 12:46 PM)  

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