What comes to mind when you think of summer?
Is it sunrises and sunsets?
Is it chilling in a hammock between Summer classes? Is it beach days and vacations?
Is it life-changing journeys for internships and invaluable learning experiences?
Is it time to relax or learn a new skill?
It’s been none of these things for me. For me, summer is a battle between mind and body.
It’s dozens upon dozens of appointments, tests, medication changes or even operations.
It’s everything I want and don’t want at the same time.
I want to feel better, and this has to be done. But it’s not what I want to actually be doing with my time.
I want to be normal, not chronically sick, tired, in pain, a burden and doing the opposite of what I want.
I want to be at an internship and get through my Summer class without feeling like every task is a marathon filled with brain fog and concentration issues.
Even writing has become hard. I will forget words midsentence and become stuck.
I want my summer to be filled with checking off items on a bucket list, not building a list of medications and diagnoses.
I want to be making progress toward my dream job, but I feel like I’m not.
I want to not feel guilty for being sick or not sick enough for society’s standards. No one can see what’s happening on the inside.
I want to not have doctors listen to my story and tell me I can’t or show that they’re not listening.
I’ve just finished a monthslong path to a diagnosis, and it’s still being questioned by other doctors, leading to more tests and more cycles of guilt and doubt. More hours of feeling crazy or not good enough. Like I’m making things up even though I live with the pain and symptoms every day.
It’s hearing professors or doctors tell me I can’t do what I’ve always wanted.
I never realized my one chronic autoimmune condition would complicate things for the rest of my life. That I would wake up one day and never feel better. That having one condition spawns other issues.
I feel alone and different. Unheard. Abandoned by certain friends who didn’t understand why I couldn’t make plans or by doctors who refused to believe me until a parent was in the room. Or by professors in the past who questioned my medical documentation or told me to take a class when I’m not sick and would have the potential of not missing a lot of class days.
I won’t ever not be sick. I never know what symptoms are going to meet me in the morning. There’s nothing I want more than to be in class every single day.
Society and health care need to change, as do the thoughts that echo in my head reiterating my worst fears and chanting the words doctors have told me: “You can’t do this,” “Just put on some clothes and go to class” or “Your issue is likely psychological in nature.”
I couldn’t go to school if it weren’t for the Disability Resource Center at UF. Inclusion is more than a check mark or hitting certain benchmarks. You can’t change your whole class or plans for one person, but there is one thing you can do: have empathy and consideration. And that’s what the DRC has given me.
Sophie Feinberg is a UF journalism junior. Her column comes out Tuesday and Thursday.
