Why My Chronic Illness Makes Me Scared to Go Home

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.