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Why My Chronic Illness Makes Me Scared to Go Home

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I’m scared to go home. No, this isn’t an abuse story — it’s a medical incompetence one.

If I hadn’t chosen to go to school in Massachusetts, I know with full certainty I would be dead. I arrived at university at a low weight, afraid to eat and drink. For seven years, I had been fighting undiagnosed gastroparesis — which, being a non-diabetic, athletic kid, was always brushed off. It seems it was “easier,” as a child actor and model, to assume I was struggling with an eating disorder than to admit there was (and still is) something else wrong.

It’s hard to see a zebra in a young kid — I think it feels like a condemnation. I was an actor — I had to be exaggerating how much pain I was in, right? I must want to be throwing up, right, to “fit the demands of my industry?”

No. A million times, no, but what was I to do? I was a kid, powerless and afraid. I looked forward to death. I became suicidal; prior to coming to Massachusetts, I knew I wouldn’t have a future.

Upon receiving a diagnosis, I suddenly had treatment options and I suddenly had time — a life to live — and then, it all came crashing down. I was diagnosed with severe hypertension of prematurity, making me a walking stroke risk. I’ve had this since childhood, but it’s always been brushed off as a “white-coat fear.” I have permanent damage to my heart from it — I’m always tachycardic.

Now, I’m studying to pursue a career in medicine. I’ve been fascinated by the process of disease — I’m not one for a white-coat fear — but why was this dangerous symptom always brushed off? It’s easier to say to a child that they’re just afraid than saying they’re at constant risk of dropping dead.

Needless to say, I’m afraid of going home — back to the doctors who, perhaps, were afraid to take me seriously. Back to the ERs that would send me out with a compressed spinal cord and bezoars more times than I can count. It’s not because they’re bad — they just don’t seem to believe healthy-looking young people.

I’m 20 and recently had to have a disk in my neck removed because it was compressing over 90% of my spinal cord. I had been complaining of neck pain since I was 9 and lost sensation in my legs at the same time. Yet again, my concerns were brushed off. I was told over and over again to go to physical therapy, and just “stretch it out.” Now, 11 years later, I can finally feel the floor below me all because, in Boston, there’s a hospital that specializes in young people like me.

They, for the first time, took me seriously.

I feel grounded and no, not just because I can feel the shoes on my feet, but because I know that here, I won’t be abandoned.

I just have to hope nothing bad happens while I’m home in California. Boston has given me a chance to live, and I’m afraid I’m going to die in our medical desert.

Please, if you’re a medical professional or parent, listen to your healthy-looking child. Even though our cheeks may be rosy and our eyes bright, we may still be staring death down. Please, let no one else be afraid to come home.

Photo by Analise Benevides on Unsplash

Originally published: May 17, 2019
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Take Me Home