Yes, I am 24. And Yes, I am Chronically Ill.
“Aren’t you a little young to have that?” which is usually accompanied by a disapproving and disbelieving side eye that I might just be a little bit lazy or whiny or naive. As pain radiates from somewhere in my body because it is always somewhere in my body, which is why I’m having this conversation to begin with. I want to shake them and scream the ridiculous details of all my symptoms today or peel back my skin and show them the pulsing and angry records of my pain.
What do you know about me?
I want to ask if they think I wanted to have my condition. or if I wanted to be having this conversation and seeing that look on their face. I want to tell them of the exhaustion and humiliation from constantly going to the doctor and insisting that yes I am still in pain and yes I am struggling. I want to tell them that every time I’ve gotten my blood work back I’ve prayed for something to show up so that I have something they will believe when they ask me what’s wrong. I want to ask them if they know what it is like waking up every day dreading what will ache today or what I can manage today or if I can continue with my day to day plans, occasionally wondering how I can ever make future plans when I don’t even know if I’ll be able to shower today.
I am 24. I have been sick since I was 18. I had a back injury from work that never healed properly but also might not be the reason I am sick today. I have fibromyalgia. I am recently diagnosed but the pain has been following me for years. It could have started before I was 18. I only recently realized that not everyone has pain everyday somewhere in their body. I do. I have a disability and nobody knows where it came from or how it happened or how to fix it. There is no cure for fibromyalgia.
I know I am young. Part of my grief lies in the very fact that I am so young and have such a long and painful life ahead of me regardless of how my life plays out. I am still learning how to live with that.
What is Fibromyalgia?
Fibromyalgia is a chronic pain condition, in short my brain sends signals to my body that I am in pain even though there is no medical or physical actual cause to my pain. In theory the pain doesn’t exist and can’t be treated. But my body is in pain anyway. And I still feel it as if it was happening. It is very real to me and it can’t be overcome by thinking it away just like you can’t fix a broken foot by walking on it and pretending it doesn’t hurt. With fibromyalgia though, often I have to walk on the broken foot. I am often right in front of you and in pain.
As if there are qualifications for pain, justifications that have to be made before I can claim my right to feel.
Right now, I am right in front of you, in pain, as we have this conversation. When you ask me if I am too young to be sick you have already dismissed the pain I feel as I sit with you. I once again feel the need to justify my existence, the felt experience of my body in this room, my right to pain. As if there are qualifications for pain, justifications that have to be made before I can claim my right to feel. To exist fully embodied and alive in this room.
At the same time I haven’t learned how to respond to what you perceive as an innocuous question but which reflects back to me my fragile existence and paralyzing questions of a future I am not sure I have a right to. So I drink my coffee and shift my aching limbs and smile politely back. I usually go with the weak response of “yeah, it really sucks” or “Well, the doctor did diagnosis me and we did do all the tests”. I wonder now if I should consider a stronger answer or if you should perhaps stop asking the question when you haven’t even asked how I feel today.