My name is James Dean (not kidding), I’m 36 years old, and I have ankylosing spondylitis. I have been in pain for so long I honestly can’t remember what a pain free day was like. I know my first twinges of pain started towards the end of high school. Shortly after I graduated was when it really started to become an every day thing. I tried to hide it as much as I could, I felt that it was something I could work through and live with, and at 18 who wants to be the guy who can’t hang with his friends or have fun with his girlfriend because of some phantom pain that the people who knew would just say was in my head. But hiding it ended up changing my personality, making me more distant, more prone to anger and hard feelings and made me lash out at people who didn’t deserve it. It didn’t help that whenever I saw a doctor I was told there was no way I could have what I presented with at my age. I was told it was everything from a pulled muscle to something made up to score pain killers. The most I ever got from one doc was a cortisone injection and a prescription for ibuprofen.
I did what every 18 year old guy would do. Ignore it and pretend it didn’t bother me and tough it out. I buried myself in work as a parts picker and delivery driver for an auto parts warehouse. Every try to pick up a car hood while dealing with full body pain? I don’t recommend it. But my method of “dealing with it” came at a pretty hefty price. The more pain I was in the more I withdrew. As my attitude changed I started losing people. I lost my girlfriend, friends, even some family members walked away. Honestly I don’t blame them either, I know now my attitude sucked but when you hurt all the time and no one could tell me why, it was the only way I knew how to live. I was thrown into a depression that I ended up treating with heavy doses of liquor. Which led to the loss of more friends who I would guess got sick of me being depressed all the time. No one wants to hang out with “that guy”. The party downer, the guy who was depressed and drank, and got more depressed. Looking back I can’t blame them either, those people drive me crazy too.
Fast forward many years to the point when the disease for whatever reason kicked into high gear. When the visible swelling began. That was a double edged sword. I was in more pain than I had ever been in before, but now my pain wasn’t silent anymore. SOMEONE could actually see it. I was at my mothers house working on cleaning up after a roofing job. We were all sitting around the kitchen table, and my cousin noticed my knee looking odd through my jeans. When I lifted my pant leg no one around the table could believe how swollen my knee was. That’s when I felt, to a point, people are finally listening. And not only that, MAYBE something could be done.
As it turned out, my cousin was a medical assistant to a doctor who worked in a hospital close enough to where I was living. From my understanding she all but threatened his life to see me as soon as humanly possible. So I made it in within 4 days. Needless to say even though I had some type of physical manifestation of my condition, I wasn’t very hopeful. I had seen too may at that point and none of them could see far enough past their own egos to treat a young man with chronic pain. So I sat in his office and ran through the the whole story…again…for someone I had little hope in. Then he asked to see my knee. That’s the moment my life with this disease turned around. The doctor took one glace at my knee, then my hands, my feet, and lastly my ankles, and he looked almost distraught. And he said something that finally validated the fact that my pain was real, and what I was living through wasn’t in my head or just some kind of phantom pain. He said “I am so so sorry. You should never have lived this long like this, someone should have caught this a long time ago”.
Within an hour I was in the rheumatologists office. I was diagnosed with RA on the spot, and treatment options were discussed, but not before my knee was drained, and I was shot up with enough cortisone to make a middle linebacker happy. It took another few years and a battery of tests before the diagnoses of AS was made. Since then I’ve been on remicade and celebrex. Both of which have opened up new challenges for me, but at least now my life feels a bit more under control. I still am not pain free, and I know I never will be. But now it’s more manageable, and there is a name for my sickness. But there will always be the challenge of living with a silent and invisible disease, and dealing with the people who will never understand how infuriating it is to hear “but you don’t look sick”.
I wish I could end this story on a high note or on a tone of hope for the future. I suppose if this was a TV show this would be the part where some one would start playing some god awful happy elevator music on a harp, and the sun would come shining through the clouds on a field of dasies with children laughing and running around a maypole. Well I hate happy elevator music, and maypoles are stupid. It may be a bit of a downer, but I am also a realist and I know some of what my future holds. This disease has stolen so much from me it’s hard to look back with anything but sadness and anger over what I see as a lost life. Yes there was some good parts, and I’ll always look at those times with happiness, but overall I look back and see the stolen life of a young man who will never see the full potential of what might have been. This disease to this day steals more and more of my life, and unless someday a magical cure is found, it will never stop taking. I will never begrudge anyone their hope, and their desire too see things with an upbeat attitude. I wish I could see things that way sometime. But like I said, I am a realist. I have lived in pain too long. All I see is a lifetime of unrelenting pain and constant limitations until I die. That is the unfortunate yet harsh reality of living with AS. But I don’t look sick.
Chicago, Illinois United States of America