This week felt like my life has once again been reduced to lab results, flare-ups and waiting rooms.
My ophthalmologist gave me the green light to go back to school. Even though I’m not healing the way she expected, even though my eyes are still swollen and even though this recovery has been slower and messier than anyone planned. Still, I can go back because when you live inside a body that fights you every day, “stable enough” is the closest thing to victory.
I was also accepted into a pro bono dental program, which sounds clinical when you say it out loud but what it really means is I don’t have to choose between dental health and my bank account.
And that matters more than people realize because here’s the ugly part behind the "good news."
My eyes are too swollen to say I’m healing properly, too swollen to move forward with the second surgery. I'm stuck in that miserable in-between where nothing improves and nothing truly breaks either.
I’ve been on cortisone for a year and a half longer than anyone should. Long enough that my body doesn’t quite remember how to function without it.
IVs every four weeks instead of six. Teeth cracking without warning. Depression making it impossible to perform perfection and yes I'll admit, it made it hard to take perfect care of them. But this isn’t neglect, even the doctor said it. This IS the medication. This is what long-term cortisone can do.
My ophthalmologist is getting worried. She needs me off cortisone, but my body resists every attempt. There’s fear the cataracts will come back, fear of what happens if we stop the cortisone anyways and fear of what happens if we don’t.
It truthfully feels like my body is plotting a revenge against me.
And somewhere in all of this, I’m still 25 dreaming about a “normal” life. Still trying to build something that doesn’t revolve around appointments and trying to find myself in a body that has felt medically managed instead of lived in for years.
People don’t talk enough about how chronic illness steals identity. It's not just the pain and symptoms but the slow erasure of who you once were; identity slipping away, one prescription at a time.
Even something like tattoos becomes a discussion, a risk calculation, a debate. As if every choice I make has to pass through a medical filter first.
And I truly understand the concern but when your body feels like a non-stop battlefield, well, sometimes self-expression is the only way you feel like you can reclaim it.
There’s anger in this. There’s exhaustion and there are days when the weight of it feels unbearable.
Between the flare-ups and the waiting rooms, between the lab results and the late-night spirals:
I am going back to school.
I don’t have to worry about how I’ll pay for dental work.
My doctors are trying, even when the answers aren’t clear.
This isn’t a clean recovery story. It’s really not inspirational even if I sometimes try to shape it that way for the sake of my own mental health.
It’s messy, it’s frustrating, it’s terrifying.
But it’s mine and I refuse to surrender it quietly.
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