showing up for my illnesses is hard
I’ve written about chronic illness being a second job before. I’m feeling it especially hard right now.
I think of all the time spent in waiting rooms, all the time in appointments, the time spent getting to them and back home again.
Getting referrals in time for the appointments. Inserting my insurance card at the doctor’s office or hospital once a quarter to be able to get prescriptions or referrals. Blood tests, stool tests, urine tests, MRIs, gastroscopies and colonoscopies, infusions. Ordering the meds to hopefully arrive on time.
Eating a certain way not to trigger stuff. Exercising and stretching for mobility, help my bones and keep muscle mass.
Injections every two weeks forever. A pill every day. Bad time? Another course of Prednisone. Pain. Rashes. Rage. Water retention. Muscle loss. Round cheeks.
There’s always something to track, something new. Medication adjustment, new medication altogether, now this works against that but not for this, and so on. Breakthrough bleeding I have to bring up at the gynecologist. Good control over my spondyloarthritis with adalimumab, but struggling with the Crohn’s, which I’ll have to bring up to both my rheumatologist and gastroenterologist. That’ll likely mean another new medication and a split, since I used to be able to take one drug for both. One more thing to track, to get prescribed, to reorder and pick up in time, one more thing to jam into my leg.
2 years and I still struggle with injecting anything and drag it out for minutes, wailing to my wife that I don’t wanna do it. 2 years with a diagnosis and while it has been long enough, sometimes it just hits me all over again that this will never go away and I’ll always have to deal with that, and I just wanna cry.
Sometimes, I just wanna give up and not go to the appointments, not take my meds, and avoid even thinking about it. Sometimes, I’d rather keep on living with some new issue and pain and procrastinate on it, than address it with doctors. It takes me a huge amount of energy to make the appointments, and sometimes I keep putting it off for weeks. On the day of, I keep thinking about not going. I haven’t missed a single one, because logically I know things won’t get better by avoidance, but the urge is still there.
Being chronically ill and having a doctor’s appointment feels like you keep being a victim reporting similar crimes over and over again to the police, and you have no influence over whether you’re believed and whether they’ll catch the perp. You always walk in not knowing what to expect. I’m lucky to be believed. But I still hate feeling like the endless victim all the time that has something to complain about, whether new or the same old crime. I no longer want to be a victim! Even I get bored and annoyed by it. Again? You’re having issues again? Are your meds even doing anything?
I don’t even wanna bring it up to people anymore or answer honestly when people ask. I’ll be in agonizing pain one week and fine the next, but I still do the same things (work, study, volunteering etc.) because the show must go on. You as an outsider can’t make sense of it and neither can I.
I have no good explanation. I know it all sounds like complete bullshit. Most people have no concept of this type of chronic illness. Their family member or friend got a diagnosis like diabetes or high blood pressure and take their meds and are fine. They’re not getting resistant to meds, no days where it works and days where it inexplicably doesn’t. Maybe the best comparison is your friend on several antidepressants and anti-anxiety meds who still struggles every couple weeks. There’s still so much we don’t know about the brain, and the same goes for our immune system, autoimmune issues, allergies and the like.
It’s even worse than my brain has me believe, and probably for my own good so I can mentally survive. Journaling and monthly reviews made me discover this. In my head, I had good weeks and months until a particular day, but then I look back on what I wrote down over the course of this year and I’ve forgotten 90% of illness flare ups. Demoralizing, but at least I can give the doctors better feedback.
It’s tiring to do it all while it also feels like my body is simultaneously a the boxing ring at the same time and I lose and lose and lose before a win. I’m always fighting something on the side, there is always something I work around, mask, or make up for, a setback I hide.
Chronic illness is like having a toddler with me at all times. The toddler is demanding varying levels of attention, rest, encouragement, and the balancing of body needs stats like a Sim. Too bad, I wanted to study, but my toddler demands me to nap with them! I wanted to exercise, but my toddler has the runs! The toddler has the worst stomach cramps and rages in a way that could make glass burst, gotta isolate them and calm them down!
I’m sick of that toddler and having to justify its actions and working around its existence. I didn’t choose to have it, and no one else can watch over it than me. I just wanna leave it in the care of someone else for a while and forget about it.
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