When did that happen?
And how do we make it stop?”
– Meredith Grey, Grey’s Anatomy
When this whole chronic illness thing began, or at least when my mom and I started looking into my symptoms, I didn’t care. I didn’t care about the tests or the treatments or the medications. I just went with it and trusted that the doctors and my mom knew what they were doing. During appointments with my doctors while we were still searching for the big answers, after a certain point I would check out. It was usually after I explained where it all began and listed my symptoms, but then I would check out. My mom would take over, my mind would wander elsewhere, and I didn’t care because I’d been through that appointment twenty other times with other specialists who promised they’d figure out what was going on with my body. Spoiler alert: very few of them kept their promises.
This time, this round of specialists, this past year… I care. More than I ever have before. Since transitioning from pediatric to adult doctors, I’ve had to reclaim some of my independence. I’m the one filling out paperwork and signing consent forms. I’m the one making decisions about which treatments to pursue and what medications I do or don’t want to try. The stakes seem higher now.
It’s really friggin’ terrifying.
When I was a teenager, my “life” seemed so far away. I had years before I would become an adult and have to handle all of this on my own. I hid behind that, I think. I’m not a decision maker. I don’t like uncertainty. There are too many variables, too many risks, feelings could get hurt and every choice has a consequence. Decisions are too final. Pair all of that with fatigue and brain fog and I can’t make a decision to save my life.
I’ve come to realize my “checking out” during appointments was a coping mechanism. If I detached myself from the situation, didn’t pay attention while my doctor discussed my case with my mom, and didn’t do any research for myself, then I wouldn’t have to face it. What I didn’t know couldn’t hurt me. The decisions were not in my hands and I hid behind that. It was my comfort zone. Now… It’s really friggin’ terrifying, okay?
Like I mentioned above, I didn’t care when it came to tests and scans and treatments. Fine, I’ll swallow that camera pill. Sure, I’ll eat those radioactive eggs. Yeah, I’ll go under anesthesia so you can stick cameras in places I don’t want to think about. Whatever, I’ll lay back as you put needles in my feet. Sure, why not?
Now, I’m aware. By legal obligation, I have to be aware of the risks and possible complications. I have to be aware of why we’re going for this test and trying that drug. There’s no more pretending nothing bad will happen and handing the real decision making off to my mom. I’m twenty-one years old, my doctors address me now.
I find myself worried about what this pelvic ultrasound I’m going for will show. There are symptoms I’ve put on the back burner while we were focusing on POTS and gastroparesis and leg pain, but we’re finally exploring them and I’m afraid of what we’ll find.
What about this new psoriatic arthritis treatment plan? Did you know in rare cases Methotrexate can cause missed periods and infertility? My period was a week-and-a-half late and for once I actually cared. I cared about possibly losing my hair, and my ability to become pregnant, and whether or not my veins will finally give up with these added Remicade infusions. I was so detached before and I don’t even think I was aware of it.
Obviously I knew I had POTS and Gastroparesis and Chronic Fatigue Syndrome and hypermobile Ehlers-Danlos Syndrome and everything else that’s going on with my body. I knew I was/am chronically ill and that none of these things have cures so I’d be dealing with them for the rest of my life. I knew what each diagnosis meant and I accepted the reality of it all, but I wasn’t really paying attention to the details. I didn’t research other treatment options or ask any questions… I was complacent. And now I’m not complacent. My eyes opened, the glass ceiling shattered, and I am aware.
There are moments, like right now, when I wish I could go back to not caring.