Unheard

This winter has been unusual. We’ve managed to stay in the 60s temperature-wise through December. I’m not even sure it’s snowed. But this past weekend to bring in the new year, temperatures dropped all the way to the 20s.

Unprepared

I live in the Midwest so I’m always bracing myself for extreme weather changes. But I’ll admit I wasn’t ready for this one. I had already been carrying around my thick winter coat while it was still too warm to require it and I hadn’t been going out much due to COVID-19 even though I was on break. But the weekend before classes were to resume, I had a lot to get organized to prepare.

The pain sets in

Maybe I over did it those last few days and that in combination with the cold led to pain. I get aches and pains often, sure, but usually a heat pad is more than enough. But lately I’ve been having persistent leg pain. It starts in my shins, I can literally feel my bones ache, sometimes they’re even tender to touch. It’s a strange and somewhat frightening sensation. Then it moves up to my thigh muscles, though less painful it’s harder to manage. My heat pad easily reaches across my small shins and provides relief, it’s never enough for the muscle aches.

Making commitments and keeping them

On Saturday the pain reached my lower back. I remember feeling a chill then a sharp jolt of pain. I wasn’t sure what to do as I had already made commitments to pick up friends from the airport. I hoped it would pass but it persisted through my drive and arrival at the airport. I sat in my car desperately wishing I had heated seats. I could somewhat distract myself from the pain by reading the book I had brought or getting lost in the lyrics of a song playing, but occasionally my whole body would jump in shock form another jolt of pain.

Still, I didn’t say anything or tell anyone. What could they do, I had made the choice to be there so there I was.

Monday

Then came Monday morning and I was not okay. My legs were writhing in pain, my stomach in knots, and I barely had the energy to stand or eat. Yet, I had to go into the clinic.

I grew frustrated wondering why my request for accommodations was just sitting in someone’s email box. I laid in bed for as long as I could then made my way over. I was working with a new team that would be evaluating me, so I wanted to make a good impression. Then we started rounding, four hours of standing without a break. It was excruciating. I jumped at the first chance to go home, fumbled my way out and slept the day away. After the pain comes extreme fatigue as my body recovers from the fight.

Tuesday

The next morning, I still felt horrible. I again laid in bed as long as I could almost risking being late. But I needed every minute I could to muster up the strength to survive long call, which is working from before 7 AM to after 7 PM. Luckily rounds that morning were much shorter and the day wasn’t too bad. We had a couple of rapids where we dashed down 9 flights of stairs. I was proud of myself for making it without a break and managing to be only one flight behind my senior resident.

Silenced

No one would ever know how hard these past few days have been for me.

These are the times I get frustrated having to defend my health needs. I rarely ask for help but so readily give it, so when I do ask for help and I’m met with silence, it hurts more than the pain. And then, when my polite requests become frank demands, pleading for my life, and people have the audacity to call me out for not asking for help sooner or being able to help myself... Ooof, it pisses me off.

Giving support

People who don’t have sickle cell that are reading this will ask what they can do to help me, well it’s simple: BE THERE. Show support, have empathy, listen to me, don’t assume or project your limited understanding of my disease onto me, just ask me.

To those who check in on me when the pain overwhelms me, thank you. Thank YOU so much. It means more to me than you’ll ever know. The worst part of having sickle cell is feeling like so many people do not care. They have either never heard of it, only remember how fatal it is, or grossly underestimate its consequences.

Well sickle cell is not just a disease I’ve learned about, it’s a big part of my life and caring for me means caring about that part of me too. Caring enough to educate yourself, spread awareness, and check-in.