My Illness Is Invisible: A Blessing And A Curse
No one can see my immune system attacking my joints, causing sharp pain in my back and hips. No one can see my fatigue, or the injections I give myself every 10 days, or the extra effort it takes me to do normal tasks. I look completely healthy.
I have an invisible chronic illness called ankylosing spondylitis.
My diagnosis changed my life, but to everyone around me, I look the exact same as I did before my diagnosis.
Sometimes it helps to blend in
On one hand, the invisibility of my illness is a privilege. Unless I’m visibly limping on a particular day, I don’t have to deal with stares or rude comments, as people with visible disabilities do. I am not discriminated against due to visible indicators of disability. I can move throughout the world assuming the identity of a regular, able-bodied person, and reap the benefits. I get to play the part of someone without a disability — a privilege that those with visible disabilities do not get. Upon meeting someone new, my disability cannot be used as a way to pass judgment, because it is a secret until I choose to disclose it. I get to be everything else that I am — young, creative, and smart — without also being sick. For those reasons, the invisibility of AS is a blessing.
But I'm also trapped
However, it is also a curse. I am trapped inside a young, healthy body with rosy cheeks, meanwhile my skeleton feels like it’s on fire, weighed down with sandbags, and threatening to snap with every movement. On some days, when the pain is really bad, it bothers me that no one can see it. I have to continue to play the role of an able-bodied person, and act like everything is fine when it’s not. I often choose to do this to avoid the judgment, awkward conversations, and repetitive explanations that ensue if I try to fit the role of someone with a disability. So, instead of anyone knowing that I’m walking slowly due to pain, it appears that I am walking slowly due to laziness. Some days I wish so badly that I was using a cane or a wheelchair, just so people would acknowledge my disability.
I stand on the bus to avoid judgment
Think about the priority seating section on a public bus — most days, I need to sit there. But to the outside world, I would appear as a healthy young woman sitting in the priority seating when I don’t need to be. For this reason, I often stand on the bus which increases my pain, because I’m afraid of the judgment I’d receive if I asked for a seat. I wish I could scream it out or write it on my forehead…any way to make the world aware of the pain I am in.
AS is real
Though invisible, my illness is real. I benefit from the invisibility when I assume the role of an able-bodied person and avoid discrimination. But I also struggle greatly and experience other forms of discrimination, due to the fact that some people don’t even believe my illness exists because they can’t see it.
I have learned a lot from my diagnosis. It has changed the way I see others. I used to make more assumptions about someone’s health based on their appearance. Now, I look around at other “normal”-looking people — the young people, the cheerful people, the athletic people — and I remind myself that they might be sick just like me.
Suffering, fighting, and overcoming — invisibly.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?