Yes, My Medications Are Working, But I’m Still Disabled
Before I started treatment, ankylosing spondylitis had a much greater impact on my life than it does now. Every hour, minute, and second of my day were spent in severe pain. Most days, I could not move. Walking and sleeping were torture. Although I am a writer, I cannot find the words to describe the emotional and physical agony of the year I spent undiagnosed.
Finding what works
Today, I use a biologic drug called Humira and NSAIDs to reduce my symptoms and function in my daily life. Because my medications are so effective for me, there are some glorious moments where I forget I have AS, even if just for a minute or a second. Don’t get me wrong — I am so grateful for the quality of life I have now. However, because I function so well, it sends the message that I no longer suffer from AS and I am no longer disabled.
I'm still impacted every day
I was inspired to write about this topic because my symptoms have been particularly light for the past month of my life, for no reason in particular (because that’s how AS rolls). While I still wake up with stabbing pain first thing in the morning, I am able to accomplish my daily tasks with low-to-moderate pain levels, and severe fatigue is occasional. I can go for walks, exercise, and live like I couldn’t before I began treatment. But the truth is, I am still disabled for two reasons: 1) It hasn’t always been this way, and it will not be this way forever, and 2) The low-to--moderate pain levels still impact me physically and emotionally, every day.
I feel like an imposter
My well-managed pain makes me feel like an imposter. How can I identity as someone with a disability when I look and function like an able-bodied person? I am familiar with the worst pain that AS can cause, so should I really be claiming a disabled identity when my current pain is nowhere near the worst it’s ever been? There are many other people living with AS who have it much worse than I do. Thinking this way makes me feel invalidated — as if I don’t deserve to be acknowledging my symptoms or complaining about them.
It won't be like this forever
As I mentioned before, I still consider myself to be disabled because my treatment likely will not work forever, and because this disease is degenerative and progressive. I live each day knowing that the control I have over my illness could dissolve at any moment, and I could easily find myself back in the dark, painful state that I was in before. I live in fear of what the future will bring.
Secondly, although my condition is considered well-managed, a well-managed case of AS is still no walk in the park. I want others to understand that my level of functioning is not an indicator of the absence of pain. To live this “normal” life, I make adjustments and sacrifices. I deal with the side effects of the medications and avoid many activities due to AS. The pain, though not as agonizing as it once was, still sprinkles itself throughout my day like a Taser that I must be careful not to set off.
I am still chronically ill and disabled
“Disabled” isn’t just a label that refers to meeting a certain severity of limitations. Being disabled also encompasses the mental, social, and financial barriers that I am facing and will face in the future as a result of my chronic illness — regardless of my current level of functioning. Ankylosing spondylitis is not a sports injury or a temporary illness that happened to me once and was then “fixed”. It is a chronic and life-altering condition that will loom over me until the day I die. I have accepted this and I am coming to peace with it, but in order to fully embrace the disabled part of me, I have to accept that I am still disabled even when my treatment is working.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?