Before I was diagnosed with my spinal condition ankylosing spondylitis, I didn’t really understand that I was in pain. I know that sounds weird, but I just knows I felt like shit. I hadn’t yet pinpoint the origins of the crisis in my own body. I was a stranger to myself.
Back then getting a diagnosis involved a lot of questions about my mental health. Are you anxious? Would you consider taking an anxiety medication just to see if it help? Are you sure it’s not all in your head? No doctor I’m not sure of anything that’s why I’m asking you.
The thing is I did feel anxious. My central nervous system was in a perpetual state of fight or flight from the pain. I had tachycardia. I was twitchy. I wasn’t a sleeping well. I didn’t want to be touched. It hurt too much. I was exhausted all the time and felt overwhelmed that no one seemed to know what was wrong with me. I’m lucky no one asked me if I was depressed or I might have been put on Prozac.
I’m one of the lucky ones. My chronic disease has a simple blood panel and physical exam to diagnose it. It only took me a few specialists to get to a rheumatologist.
I fear I would have been given an anxiety diagnosis and told it was all in my head if I’d had something more complex. But thankfully we untangled that any anxiety or depression I felt was simply a function of being in an inflammatory condition so acute every movement was painful. You’d have a racing heart and a fear of movement or touch too if everything was painful to the touch
The thing is I am scared of my pain. I do regularly get caught in fight or flight fear responses if the pain appears and I’m not prepared for it. I am militant about certain aspects of self care and my biohacking as I fear flares. I fear the drugs that are required when it isn’t controlled. It makes me anxious to need drugs at all to control my symptoms. Especially in America where a war on drugs has made it hard to need anything stronger than Advil.
Everything about pain and it’s treatment is anxiety inducing in America. And that’s a hard comorbidity to live with in a disease. As if pain wasn’t enough, the latent fear that you might not be believed lingers.