I’ve had dozens of doctor’s appointments this summer.
My medical chart classifies me as someone with high-risk medication usage.
The people at my pharmacy know my name.
I have more than five diagnoses, and they keep coming.
I appear out of place in specialists’ waiting rooms and in society.
Expectations for my peer group don’t align with the lifestyle I live or want to live.
When I’m not in class, doing extracurricular assignments or studying, I’m at the doctor or recuperating with heat pads and ice packs in bed. I’ve never been out to Midtown or even a football game yet because I’m scared about my health and accommodations. An outing can cost me a semester if I’m not careful. Pushing myself doesn’t make me better. It can leave me in the hospital. But I keep doing it anyway because I want to be with friends, gain experience in my major and be a part of the UF community.
It’s hard to balance society’s expectations with how I live. What is even harder is how I balance my own expectations and goals with where I’m at. I’m constantly at odds. Even in doctor’s offices, I’m misunderstood. I’m accused of lying or am not taken seriously. “You’re too young to have these problems,” isn’t an uncommon message from doctors. No kidding.
Wishing or wondering won’t make my circumstances change. Pushing onward has a silver lining. I’m learning to find my voice, be an advocate and reason with professionals. It’s given me a different kind of strength amid my physical weakness. I hate pity. I just want understanding, especially in health care. If there’s anything my life has shown me, it’s that there is a health care gap. There’s specialized care for older patients but not for young ones with similar issues. That’s a problem.
Worse than feeling alone and in pain is going to get help and being refused or unheard.
This is a widespread problem. I’ve had to wait months for a diagnosis. I’m still waiting for solutions to other problems. That could take years. Worse than fighting to live “normally” is fighting to be heard and waiting, feeling sick and knowing something is off but jumping from doctor to doctor until someone finally listens. Then it’s waiting for test results. Then it’s becoming your own doctor. It’s turning to Google and scanning medical research and asking for, or demanding, tests. It’s researching at-home treatments.
There’s pediatric treatment, adult treatment and elderly treatment. I’m in-between. I understand what’s happening to me. I know how to explain it. However, I’m not taken seriously. I usually need an older adult with me to even be considered.
As a teen and now a young adult, I am in a different period of life with different truths. I am trying to deal with schooling and taking steps to give myself the future I want. I’m not fully dependent on my parents, but I’m also not established in a career or with my own household. Now I’m trying to figure out how to navigate sick life while also trying to be a college student. I’m not a young kid, but I’m also not exactly a full-fledged adult.
Being a college town with a renowned hospital teaching the next generation of doctors, I feel like Gainesville can be a great place to work on adapting care for young teens and adults with specialized care needs.
Sophie Feinberg is a UF journalism junior. Her column comes out Tuesday and Thursday.
