When people mention arthritis, the natural response is, “I hope I don’t get that when I’m older!” Well, I hope you don’t either. Because it’s terrible. I should know; I’ve had it since I was 25.
Considering my premature gray (I discovered my first silver strand at 14), my dependency on prune juice, and my predilection for vintage cinema, it’s not surprising I was hit with arthritis. But all jokes aside, arthritis can affect anyone. According to Arthritis.org, a whopping two-thirds of people with arthritis are under 65, and that includes children. Who knew, right?
My arthritis awareness didn’t start with achy wrists or knees, though. Far from it. Five years ago, my left eye became inflamed, blood red, painfully photo-phobic (allergic to light) and blurry. I was at a loss for an explanation, and I naively blamed it on contact burn, but the issue continued long after I’d removed my contacts. After seeing specialists at my doctor’s office, my ophthalmologist’s office, and then later at a major eye hospital, I found out I was suffering from Uveitis, an inflammation of the middle layer of the eye (uvea).
A whopping two-thirds of people with arthritis are under 65, and that includes children.
By this point, I looked like I was auditioning for a horror film. My one eye was red and bulging and half-closed. But after I left the hospital, I was given a pirate patch to wear, which, if you haven’t worn one, is an absolute pleasure to don in public (yes, I can still see you staring with my good eye).
According to the Brazilian Journal of Rheumatology, my eye condition was linked to an auto-immune disorder called Ankylosing Spondylitis (AS). Which, after X-ray and MRI testing, I found out was exactly what I had. Turns out, it’s hereditary and my father has it. Thanks, Dad!
Struggle aside, it felt so good to have a name for my condition. A reason. A culprit. I’d spent the better part of a year playing a guessing game with my body, wondering if my eye problems were due to the stresses of grad school (which I’d go to with sunglasses on, because I was, at this point, a bona fide vampire), dirty fingers, or something else altogether. And let’s be honest: I’m a hypochondriac with Internet access. You work it out.
For such a difficult-to-pronounce name, AS is pretty easy to explain: It’s a type of arthritis that primarily affects the spine. According to this report from the Annals of the Rheumatic Diseases (a journal with a particularly creepy name), “Ankylosing spondylitis (AS) is a complex, potentially debilitating disease that is insidious in onset, progressing to radiological sacroiliitis over several years.” It can affect the other joints in the body (my knees and wrists can attest). And AS is a chronic, lifelong disease, according to the Spondylitis Association of America.
Struggle aside, it felt so good to have a name for my condition. A reason. A culprit.
It may cause an overgrowth of bones in the neck, hips, or back, and it can cause vertebrae to fuse together, resulting in a rigid spine. People have ended up totally pitched forward, with a hump back.
When I think about my future, I do not see myself slumped over, debilitated, and in extreme pain. But I also know that because this is lifelong, I can’t predict what might happen. This scares me more than I like to admit to myself.
Thankfully, my symptoms are fairly mild compared to what they could be, and I’m grateful for that. I can walk and move freely. I haven’t known a day without discomfort or pain, though, and if I don’t work out or if I sit in one position for a while (planes are not my friend), the pain can be overwhelming. On top of that, AS can cause intestinal issues, depression, and fatigue. I’ve experienced those other issues, too, especially the intestinal problems.
Having an auto-immune disorder is no walk in the park. For one, it’s mostly invisible (which means the complainer tends to looks histrionic and whiny), and secondly, our society isn’t really equipped to deal with issues like these. If you have a job, you’ll probably find it difficult to make it through the day without feeling awful or needing a break. If you go to the doctor, you’ll need to find someone you can trust to really get down to the bottom of your issues, someone who can see the systemic big picture. You have to fight for a well-rounded approach, since having an auto-immune disorder affects lots of moving parts which aren’t always obviously connected.
But mostly, it’s a challenge to be young and different from your peers. How do you explain that, actually, you’d prefer to take a nap? How do you decline a rock-climbing invite because your body just won’t behave? How do you explain to your employer that you feel like you’re on fire even though “you look healthy”? Answer: It’s tough.
Because this is lifelong, I can’t predict what might happen. This scares me more than I like to admit to myself.
Since being diagnosed, I try to eat well, as getting an adequate amount of Omega-3s (like EPA and DHA from cold-water fish) is a particularly important part of my diet. I stretch constantly and make a point to walk instead of taking the elevator or the short way from point A to point B.
But the number one thing I’ve found to be helpful is information and community: Joining forums, finding people who are also achy and grumpy, getting involved in support groups on Facebook, and asking for the best doctors (as opposed to just any doctor).
But I mostly have learned not to take myself too seriously. Because if you’re an old, arthritic lady at heart, you can watch all the episodes of Golden Girls any time you want, without judgement.