An Open Letter to Ankylosing Spondylitis

The first moment I realized how much I hated you was junior year. I don’t really remember the details of my day, but I know it was shitty. I came home from school and flopped onto my bed, resisting the urge to scream into my pillow or throw my phone against the wall. I decided I couldn’t handle all the negative energy I was holding onto. I needed to get it out. What better way to do that than go for a run? I hadn’t run more than a few hundred feet at a time in a few years, but my love of running hadn’t decreased. As I started my warm-up lap around my neighborhood, I immediately felt better. I missed running, I thought. I should do it more often. But you just couldn’t let me have that, could you?

Selective Focus Photo of Woman Wearing Yellow Shirt

By the half-mile mark, I was struggling a bit, but I didn’t care. I had to keep going until I got all of my frustration out. At the end of my mile, I was feeling much better. I got home, stretched, and took a nice warm bath. It thought maybe that would be the end of it-- a little soreness, sure, but there was always Advil. I wasn’t prepared to barely be able to walk the next day. Getting out of bed, my hips were so stiff they could hardly move. The bus ride to school felt excruciating; I couldn’t find a single way to sit that didn’t make me feel like my legs were about to fall off. Even with my daily anti-inflammatory plus pain meds, the stiffness and discomfort lasted the whole day. And all I could think when I got home, frustrated and tired beyond belief, was how much I would love to go on a run.

I hate that I had to learn to pronounce your name. I can never decide if calling you “arthritis” or “ankylosing spondylitis” out loud is worse; the former is often met with laughter or pity, the latter with concern and confusion. So I try not to mention either. 

I hate that I can never tell where you end and where regular life begins. Am I sore because I had a great workout, or because I pushed too hard and moved my hips in a way I shouldn’t have? Is my fatigue just one of your symptoms, or because I was in too much pain to sleep last night, or just because I didn’t drink my coffee this morning? Does my back ache because of you, or would anyone’s back hurt if they sat in their desk chair for an hour?

Girl Holding Her Knees

I hate how much I don’t know about you. I don’t know what you’ll do to me in the next ten years, how much worse you’ve gotten in the past few months, or even what your full list of symptoms is. Google is often of no help. I resent the way the doctors always tell my dad about you, instead of me. Of course, I understand the reasoning. I was 16 when I was diagnosed, and even more confused and afraid than I am now, and my dad has been going through this same thing since before I was born. The information would make more sense coming from him, anyway. I don’t even know if it would make a difference if they talked to me. I’d probably still feel just as clueless and unprepared dealing with you.

I hate how much you make me doubt myself. I hate how you creep up on me slowly and make me wonder if I’m even in pain at all. I don’t like to call you a disability. I can pretend that’s because I don’t want to let you win, but we both know how much power you hold in this relationship. There’s always a voice in the back of my head reminding me about how many people have it so much worse than I do, how lucky I am that no matter how much pain you cause me, at least you technically still allow me to do whatever I want, how I’d be a terrible person for asking for accommodations. My old room in McBride didn’t have a back behind my head. It (you) made getting up every morning feel unimaginable. It (you) made doing homework in my room impossible, with the bed and the chair and the wall and seemingly joining forces against me, and you as their leader. And yet it took weeks of my family and friends trying to convince me that it was okay for me to ask for a room switch before I looked into it, and even then I still felt guilty. I felt even worse applying for accommodation housing next year, even though my doctor filled out the form that affirmed the ways you affected my life. I shouldn’t ask for special treatment, because really, you aren’t that horrible. I shouldn’t even be complaining, right?

I could go on. I hate how you conspire with my anxiety to constantly make me wonder if everyone else thinks you’re as fake as I do sometimes. I hate how much pain you’ve caused my dad, and I hate that you made him cry at the thought of passing you on to me, a burden that is yours to bear, not his. I hate that you exist and that I can’t end this letter on some uplifting, inspiring note, about how despite all the damage you’ve done to me and my family, I still manage to overcome it, and I don’t let you get to me anymore, and I know that you’re real and I’ve learned how to live with you. I haven’t and I can’t. I hope that one day I will, but I didn’t want to wait for that day to come to have a conversation with you. For now, I’ve decided it’s okay for me to hate you, maybe even helpful. And now that I’ve put my hatred into words, maybe I can start to take the first steps towards accepting that you are real, that I am not the liar and fraud you convince me I am, and I don’t have to be afraid of you anymore.