Chronically Ill and Chronically Inconvenienced
I don’t think I fully understood what I was signing up for in 2018. And I know that sounds ridiculous because obviously nobody signs up for a chronic illness, but what I mean is I didn’t understand the scope of it. I understood the diagnosis (or at least I understood the google diagnosis). I understood the medications and the appointments and the weight of what it meant for my future (or at least I understood that my life was going to dramatically change). What I did not understand was that being chronically ill also means being chronically inconvenienced. Forever. For the rest of your life. Every single day in ways big and small that you never see coming until they are already happening to you.
It’s not just the big stuff. It’s the accumulation of everything else.
Take a few weeks ago. My kids were sick with the flu… not during flu season, riddle me that. Which, if you are a parent, you know that sick kids are already their own special kind of chaos. But when you have pulmonary arterial hypertension, a sick kid in your house isn’t just an inconvenience, it’s a potential problem, especially the flu. Because if they get me sick, we’re not talking about a rough week on the couch with some DayQuil and a blanket. We’re talking about something that could land me in the hospital. With pnumonia. So while every other parent is just trying to survive the runny noses and the sleepless nights, I’m also quietly doing the mental math on my own risk level, washing my hands obsessively, hoping for the best, and bracing for the worst.
That’s the part people don’t see.
The constant low-grade calculation that runs underneath everything.
And then there’s the driving. I have had to make multiple trips to Mayo Clinic in Jacksonville, which is two and a half hours from where I live, because the local hospitals and outpatient surgical centers here won’t take me. My medical history is too complex. Too high risk. So for a simple procedure that most people can get handled in a fifteen minute drive from their house… meanwhile I’m packing a bag and burning half a day on the road each way. There and back. For something routine. Because my body (and medical history) has made even the routine things too complicated for the local doctors who don’t feel equipped to handle my case.
I want to be clear, I’m grateful for Mayo. I really am. But grateful and exhausted can exist at the same time and right now they absolutely do. I shouldn’t have to drive to Mayo just to have simple, and efficient, medical care.
And then there are the appointments. The relentless, never-ending, always-on-the-calendar appointments. Follow ups. Labs. Specialty visits. Clinical trial check-ins. Allergist. Dermatology. Retnia. Dentist. Pulmonology. And now additional stuff layered on top of the stuff that was already there. My calendar does not look like a normal person’s calendar. It looks like a medical practice’s scheduling system. And I am both the patient and the person managing all of it, which is its own full-time job that I have talked about before and will probably talk about again because it genuinely does not stop.
I think what gets me is that there is no finish line with this. With a lot of hard things in life, you can see the end of it. You move through it, you get to the other side, and things go back to normal. Chronic illness doesn’t work that way. The inconveniences don’t resolve. They just change shape. Some weeks it’s the kids being sick and you holding your breath. Some weeks it’s a five-hour round trip for a procedure you couldn’t get done locally. Some weeks it’s three appointments in four days and a pharmacy call that takes forty-five minutes to get anywhere.
It’s all the time. And you just keep adjusting.
I didn’t know that’s what this would be. I thought I was signing up to manage a diagnosis. I didn’t realize I was signing up to have my entire life reorganized around it, permanently, with no opt-out.
But here we are. Adjusting, again. Figuring it out, again. Showing up for the appointments and making the drives and doing the math in our heads so nobody else has to see how much it actually takes. I’m thankful for my body that continues to fight every day to be here. I’m thankful for my husband who always steps up when I need him. I’m thankful for the community we have that never lets me down. I just wish sometimes it wasn’t so hard, but both of those feelings can exist at the same time.
That’s just what being chronically inconvenienced looks like. It’s not dramatic. It’s just relentless. If you feel me, drop a comment or share this post.
xo,
g.