Getting diagnosed with ankylosing spondylitis (AS) wasn’t just about figuring out (finally!) which disease was causing me to feel like a hot garbage fire — it was about accepting one unchangeable reality and creating a new one.
The unchangeable reality came with a thousand variables: Your body will be sick. Your body will change, maybe for the worse. You might get better. You might lose mobility. You might change medicines a dozen times. You might not be any worse off than anyone else. You might need surgery.
I could predict none of these things. The only thing I could do was to create a new reality for myself in which I had a hand in those variables, even if I still walked into a largely shadowy precipice.
These are the things ankylosing spondylitis taught me about needing control, about playing an active role in my disease, about acceptance, and about myself. Yep, little old very, very clueless me.
Mortality is a thing
It isn’t that AS is a guaranteed killer (although scientific studies show that we are at a higher risk for cardiovascular-related death), or that most people with AS will die of AS-related issues. It’s that having a chronic illness reminds you that you are a fragile, sometimes weak thing. That your body is swimming against the tide of genetics and environment, forces we rarely think about, or if we do, we think of them in the abstract.
In the beginning — I’ll be 100 percent honest — I was depressed as hell. I felt as though suddenly my world, which was, for the most part, healthy and “normal,” was shattered by the reality of death. I was a walking existential breakdown. I was totally engulfed in shadow.
Around the six-week-post-diagnosis mark, I got sick of walking around in a bubble of absolute self-pity. So, I accepted that all of us are a) going to die of something, and b) deal with physical and mental crises day in and day out. This was my cross to bear, just as others have theirs. Which leads me to my second point:
Gratitude is key
Obviously, gratitude is a tough topic. People say, “Have gratitude!” like the slogan is going out of business. Some of them mean it, while others use it as an empty, chronically positive cheer. Sometimes people use it without empathy, compassion, or self-awareness.
It’s hard — like, really, really hard — to have gratitude when you are sleepless and suffering, when you’re walking around feeling like your spine is made of rusted tin, or when your fatigue is so bad you have to give up your social life. That’s not when you need to have gratitude.
I found it helpful to apply gratitude to small moments; often, this came in recognizing that I was alive, that I was able to contribute in some small way, that I was able to write and connect with others, that I still had mobility. And again, that I was alive.
The world is beautiful
I don’t have a religious perspective, per se, so finding meaning is an ongoing struggle for me, but it’s a journey that I wouldn’t give up for anything. It’s helping me find beauty and gemstones among the rubble. For example, I meet radiant, empathic people in Facebook support groups who have AS or other chronic illnesses. I gain so much from them, and I feel so thankful for their support.
Those little things give me hope, and they instill in me a sense of meaning: Be good. Be kind. Be helpful. Be appreciative. When it comes to being sick, and knowing others who are, it helps to keep an eye out for the beauty. It’s out there.
I am resilient
Strength differs by person, and that’s OK. There were days in my youth when getting a blood test made me straight up vomit in the bathroom, wrestle a room full of nurses away from me, and pass out on the floor like some melodramatic diva.
Nowadays, I can get my blood checked. I can give myself an injection. I can make a doctor’s appointment like a big girl.
I work out three to five times a week, maybe more. If I can’t, I walk. If I can’t walk, I put on YouTube tutorials and do weird arm circles in the air.
I choose food that is good for me, even if it means forgoing some of my favorite things (which is every snack ever, preferably in bed at night).
Oh, and you can read the rest of my columns here.
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