When You Don't Want To, But You Have To
On being a medically complex patient in 2025, what "I can't" really means, and where I feel the most frustration.
Have you ever looked at something, or heard something, or realized something, and had it followed immediately by a deep and painful exhale?
One where it simultaneously feels like the wind has been knocked out of you and like you may never be able to fully inhale again?
As it’s the first Monday of the New Year, I’ve been making several calls regarding my medical and pharmaceutical benefit coverage for the next 12 months. In addition to the things I’ve had to review yearly for quite some time, this year comes with new challenges.
Surprised?
Why?
For example, now I have to ensure I have enough allotted visits to complete the thorough physical therapy course recommended after my complete ACL reconstruction surgery back in October… and this morning I learned that the pelvic floor therapy I need as a secondary consequence of that injury also counts against that same total number of visits.
Additionally, I’m starting to prepare for (freak out about) another upcoming surgery, which will require that I not only need to pause physical therapy on my knee, but I will also need a different version of pelvic floor therapy for that recovery as well. And guess what? All of those visits, for three interconnected but separate things, still count toward the same total number of allotted visits for the year. 40. I’m allowed 40 “manual” therapy sessions over 12 months, and at this rate I'm not even sure I’ll have any left by May.
Thats when it happened.
The exhale.
The weight of feeling like being a complex medical patient is beyond what I can handle.
Now, I know logically this isn’t true, because I’ve been handling it for the last 16 years. However… there are still moments and seasons and injuries and challenges that make me use the word can’t.
And by “I can’t do this” - I mean, I really, really, really don’t want to do this. I don’t want to have to figure this out. I don’t like the options and I don’t want to proceed.
Guess what?
There’s no fucking choice.
None.
Cool, right?
Especially when I’ve learned as I’ve processed much of my trauma from the last several years that lack of choice is something that automatically starts pushing me to spiral out of control, to ruminate, to have intrusive thoughts. And here I am, looking at a screen and a spreadsheet and talking to an insurance representative who probably talks to 50 people like me each day - and I find that I can’t breathe.
I can’t speak.
I freeze.
Sometimes that’s the truth too.
Brave is a shell, and sometimes it cracks. Sometimes it needs tape or glue, other times it needs to be taken off and rebuilt entirely. That’s been this last season. It’s just coming back together. I’m just getting settled back into it. And yet… I need it to be strong and cohesive. Now.
Nobody can make these phone calls for me.
Nobody can tell me what to sacrifice here or there in order to make the impossible work in my favor.
It’s all…. just… me.
The pressure feels unbearable.
And this is only information collected from one phone call.
This is only highlighting a few needs from my “medically complex” body.
A term I wish I never heard again. A term I wish I’d never heard in the first place. A term I don’t have any idea what people want me to do with. Like - are you using it because you feel bad? Or because it’s too much for you to wrap your head around? Are you using it because I exceed the routine standard of care you are comfortable offering? Or because you want to remind me what a shit show my body is? Because let me assure you - I already know all of these things.
I lived trapped in here, remember?
This is where I feel the most stuck. The most frustration. The most agony. I didn’t ask for any of these things. I have watched them happen, some slowly, some all at once, and I have responded to the best of my abilities with the resources I have available to me. No matter what precautions I’ve taken, no matter how mindful and cautious I’ve tried to be - all of these things have happened anyway.
So, here we are again at an impasse, this body and I.
I hate it and I need to make nice.
It has withstood far more than it ever asked for, and I think it’s looking for a little bit of credit.
Both of these things feel impossible to me.
And today, I realize that they can’t be.
There has to be some give and take in order for me to continue surviving. To continue facing forward. To continue working towards healing.
I think I’ll continually be trying to figure out how to set up the altar, how to leave tiny notes, how to express honesty and how to wrap recognition into it.
I think this continues to be one of the biggest challenges of life as I know it.