Chronically ill, or chronic imposter?

So, do my fellow chronic illness warriors ever feel like an imposter? This is something I really struggle with and, stupidly, act on about once a year.

Here’s the latest version: I’ve been having a rough season medically. My “good” is still pretty gross and my bad is fairly non-functional. I’m feeling sluggish, which I HATE. My brain isn’t as snappy as I want it to be. This happens sometimes, and it happens sometime for seasons of illness for me. I can handle the constant pain pretty gracefully, but I don’t handle the brain exhaustion and sluggishness very well at all.

So, in my infinite wisdom, I start to panic. It starts as little creeping thoughts planted by well meaning outside observers: maybe, just maybe, your meds are making you sluggish. Noooooo, your brain says. Remember how it was before the years it took to find the right meds and regulate them? Remember the pain and the exhaustion and the medical trauma? Hmmmm…. I say to my brain. But MAYBE, maybe IT IS THE MEDS. Maybe I’m totally ok and I’ve been on meds so long I don’t know! MAYBE if I went off my meds I would lose that pesky 50lbs that came with them. Maybe I would feel kind of sluggish or painful on some days but be sharp and energetic on the other days! Maybe, just maybe, I’ve been a medical imposter and I’m really not that ill and most of what I’m feeling is because of my meds? Omg, that’s probably it. I’m probably totally fine and my meds are making me feel this way!

This is reinforced SO HEAVILY by the able bodied community. Yes, sure, you may be ill, but those meds. Those meds have horrible side effects. You’ve been on them for years, how do you know how your disease is progressing? Maybe if you tried clean eating and exercise and some turmeric you wouldn’t need them. You’re in pain all the time on meds, so why not go off them? You have headaches everyday on the meds that are supposed to stop the headaches, so why not go off them? You have xyz symptom as a side effect of meds that fix the much bigger ABC… but that xyz side effect. That’s probably what’s really making you ill. Armchair physicians are CONSTANTLY giving their input whether in person, on social media, or in entertainment. And it creeps. And my brain thinks… yeeeesss… you’re probably an imposter. You’re not really that ill at all. It’s those meds.

So, my dumbass begins to have the argument with my brain. It typically lasts several weeks or months of going back and forth about how I probably don’t really have chronic illness and how so-and-so lost 65lbs and was cured and how such-and-such started clean eating and was cured and how I read this persons post and this article and this documentary. And then, finally, it needs a catalyst. The catalyst this time is that my anticonvulsant, which took years to regulate, stopped being available. It was back ordered. I called my doctor, they called in the same drug but not in extended release. No big deal…. except for my imposter poisoned brain.

I mean… maybe you’d be fine without it. You’re doing so well. You’ve done those new fancy treatments where they stab you with 60 needles every 12 weeks. You haven’t had a seizure in almost a year! Plus, that’s probably what’s making your brain sluggish. Everyone knows that medication makes your brain like cold molasses. Hmmm… my imposter poisoned self thinks. That makes sense. I know the doctors say I have a significant seizure disorder, but I have never had a positive EEG. So… psh. I probably don’t even need these any more. (Imma just ignore all the testing and facts and studies that show many, many people don’t have positive EEGs. I’m also going to ignore the 8-12 other diagnoses I have that cause and complement seizure disorders). I definitely don’t need those meds. They are why I’m feeling so bad!

So, I don’t fill the script. And things go GREAT for 3 weeks. I feel fine. I’m still super exhausted and having a rough pain season. But, otherwise, I’m fine. See, my imposter illness brain tells me, you’re fine, maybe we should think about going off all those other meds…

And so I was thinking about going off the others because I was fine… until I wasn’t. But here’s the thing about imposter illness brain. Even when you’re not ok, you don’t think it’s your illness. I’m probably just exhausted. I did things everyday this week. We’ve had really horrible weather, I’m sure that’s the headaches. I read all day and didn’t wear my glasses, I’m sure that’s why my vision is blurred. Yeah, I’m losing chunks of time, but everyone is absentminded sometimes. And so it goes for a few more weeks.

Finally, your stupid imposter syndrome, chronically ill brain, is sitting trapped in your body which is now bed bound. Too weak to walk to the kitchen and you’ve lost several days to the abyss… you can’t remember what day it is or how it got to be that day. Then you realize, all at once, you did it again. That you are, in fact, chronically ill. That you do, in fact, have several serious diseases. And that your meds are absolutely keeping you functional and productive. Then, you grieve all over again. You grieve for the life you had or want. You grieve for your stupidity. You grieve for the hope that maybe it WAS all in your head and you just needed to “be well.” So, then, you take your meds. You wait the days or weeks it takes to get them re-regulated. You apologize to the people around you who’s life your stupid imposter brain effected by your silly choices. You call your doctor and make sure you haven’t permanently undone their work. Finally, you tell yourself you will never be so stupid again. Maybe you won’t. Maybe you’ve finally learned your lesson. So I cover myself with my support system, and venture off again. This morning, there are 8 posts about “curing yourself” on my newsfeed. Ah… see…. my imposter brain says. Shut the fuck up, my body responds. And so we continue.