Please Believe Young People When We Describe Our Chronic Illnesses
I’m an 18-year-old blonde who rocks black lipstick. I love learning; I love my college, I like to binge shows on Netflix and eat ramen. To anyone on the outside, I look like a perfectly “normal” and healthy college student. But I’m not.
At five years old I was diagnosed with polyarticular juvenile idiopathic arthritis (JIA), then known as juvenile rheumatoid arthritis. For a good portion of my childhood, I couldn’t do most things children did. I never ran and played, I crawled up and down stairs, and I was never one to fight sleep. When I stopped being able to move from the neck down, my parents took me to Children’s Hospital for help.
I started medications for my illness at this age, and I could almost live a “normal” life. Everything seemed OK until puberty hit and my body was thrown off the scales. Medicines stopped working, my mental health declined, and the changes in the chemo I was taking made me incredibly weak. Life got rocky then, and it’s been rocky ever since. Unfortunately, that’s the reality of having a chronic illness.
JIA is an autoimmune disorder, it’s chronic, and it’s an illness I can hide. People on my campus, at my job, and the staff at my favorite restaurants don’t know how I look on a day when I’m in so much pain I can’t walk. On the days I’m flaring and just doing my best to make it to class and do homework, they see a perfectly healthy girl that just can’t stop drifting off. So few people see what I’m going through, and I’ve had so many people tell me they don’t believe me.
I can’t do anything to make you believe me. I can show you my doctors’ notes, my medical bills, the discoloration of my skin where I get weekly chemotherapy and biologics, the fistfuls of hair I can pull out just by brushing it, the drawer of medication in my dorm room. I could show you all of my documentation at the disability support office on campus, I could show you my disability parking placard. I have endless proof, but you will believe what you believe. If you believe that chronic illnesses are “all in your head,” you won’t listen.
I need my medications to keep me alive. Natural remedies help a little, but my prescriptions keep me moving. I need more sleep, but the amount of sleep I need would have some calling me lazy. Thinking positive is barely getting me through this; it will not heal me. I am not lazy; I am not too weak to face reality. Reality has been staring me in the face since the little girl I used to be sobbed and wished she were at home with her mom and her cat as the doctor took more blood samples.
Imagine you’re strapped down to a metal slab. You are stiff, your mobility is limited, and you’re scared. This is your bed. Try to imagine how you feel after running a mile in gym class, how your eyelids are heavy and you’re covered in a thin layer of sweat, but you’re freezing, how all you feel like you can do is flop into the next chair you see and lay down. This is the state of your body.
Imagine being in so much pain that it dulls out and you start to feel numb, not just in your body but in your mind too. Your friends don’t get a response to their texts; mindlessly scrolling through your Facebook feed is the only thing you can do, even though you have a million things to do and you want to do them. This is how a flare feels, or at least how I can best describe it.
I wish I had a way to better communicate what I’m going through other than just hoping people will listen. I don’t know how to share the experience of a flare with someone who has never experienced it. I don’t know how to explain chronic fatigue. Like all illnesses, it’s something you probably won’t understand unless you have it or you’re close to someone with it.
So please, listen to us. Believe us. I am doing the best I can – we all are.
Getty image by Marina Studio.