This post is brought to you by two things: first, the lovely and wonderful taskmaster who is Anne Ursu wants me to practice my personal writing and feeling okay with being vulnerable through words. And two: I was diagnosed in the last few weeks with a rare neurological disorder. (Nonentrained, or free-running, circadian rhythm disorder, if you’re curious. It’s actually common within the blind population, but very rare in sighted people. I am sighted.)
I have been diagnosed, or misdiagnosed, or been speculated to have, a lot of neuro conditions over the course of my life – as is probably the case with a lot of people who suffer from an invisible illness. I have had doctors and educators diagnose me with, or speculate that I may have, varying conditions on the Autism spectrum, with sleep disorders, with sensory disorders. I’ve had, of course, the chipper quacks who promised that eating right and vigorous exercise could cure all that ails. I’ve been told that everything wrong with me, clearly wrong, was just a phase or a lack of discipline.
They were wrong. And I knew they were wrong. But
eventually, it’s too exhausting to keep advocating for yourself. So I
didn’t, for a long time. I let the weight of every wrong diagnosis or
maybe-right diagnosis clutter into my sense of self. Everything that was
messed up, clearly messed up, truly felt like it must just be a lack of
discipline or a personal failing.
Because it must just be that I wasn’t good enough at being an adult to avoid falling asleep in the afternoon every few weeks, and I just failed at failed at eating three normal meals a day sometimes, and the random 105-degree fevers had to be a fluke. Bouts of vertigo were just caffeine withdrawal or they must be psychosomatic. Any excuse that I could find to undermine my own understanding of myself and my body, I’d internalized and started to believe.
After all, for about a week every month, I didn’t fail. I could get up in the morning at a normal, good time, and eat three meals and not get sick, and have the energy to go out and do things and hold conversations and then be tired at night and sleep. I didn’t always fail at adulting, just most of the time… and knowing that sometimes I didn’t made the rest of the time that much worse. Not that I think depression is caused by situations, because it isn’t, but I definitely think that the pressure of dysfunction and self-aggrandizement exacerbated the depression that I already had.
And finally, I was like, “I cannot live like this anymore. It isn’t worth it. If the rest of my life is going to be like this, then what’s the point?”
Not necessarily in a suicidal way – but not necessarily not. I felt drastic. And I had been avoiding doctors, other than my (talk) therapist and the psychiatrist for antidepressants, for years because I was sick of being ignored. But, finally, I was also sick of being sick.
“No,” I told my therapist (whom I adore, just to clarify, otherwise). “I don’t think I’m just sleeping too much because I’m depressed. Because I don’t sleep too much, I sleep wrong.”
“No,” I told my GP. “I don’t want to talk about diet and exercise again. I want to talk about what’s wrong with me that I can’t digest food half the time and never have any energy.”
“No,” I told the sleep therapist, “I’m not saying I have insomnia. And I don’t snore and I don’t sleepwalk and I don’t sleeptalk.”
“I JUST WANT YOU TO LISTEN AND HELP ME. I WANT YOU TO TELL ME WHAT’S WRONG.”
Finally, someone did! The sleep therapist. I had to wear a thing for two weeks – I complained about it smelling bad; that thing – that measured all kinds of nonsense and he took the results and said, “Huh. It’s… probably not this disorder, because it’s so rare there have only ever been case studies in sighted people, but… I think you might have nonentrained circadian rhythm disorder. Go see this specialist in the city and have them confirm or disconfirm it, but I think your results fit.”
That specialist visit was probably the best doctor’s appointment I’ve ever had. She was nice. She was respectful. She asked questions that were actually related to me, and to the answers I was giving, and seemed like logical next steps to find clarification and find answers, rather than try to shove me in a box. She kept things lighthearted even as she set up tests.
And then the explained that everything wrong with me – everything, from the sleeping to the digestion to the fevers and the dizziness, maybe even my short height – could have been explained if, in childhood, any doctor I’d ever had noted one tiny thing on my charts.
My pupils don’t dilate or constrict when light changes.
Not even my eye doctor, who I’m RELATED to, ever noticed that beyond a passing mention.
If they had, it might not have been such a struggle for me to get someone to listen, because it’s such a clear indication that somewhere between my eyes and my brain, something’s not right.
(Because it’s so rare in sighted people, I’ve been going back for more tests to determine where, exactly, that not-right thing is [and pro-tip: having your ocular nerves measured hurts; 0/10 do not recommend].)
The particular nature of NCRD – I don’t even know if that is the abbreviation, but whatever, it’s my brain so I’m gonna use that – means that for a short period of time every month or so, all of the systems of my body, everything governed by the circadian rhythm/krebs cycle, line up properly. I sleep during nighttime hours, while producing melatonin, and wake up when I produce cortisol in the daytime. My heartbeat, blood pressure, and temperature correspond to whether I’m awake or asleep. I have an appetite, and I get hungry, and I eat and feel full. As a result, I have energy. I function well. I feel human. It lasts about a week.
And then it goes away again. First sleep, and then appetite and digestion, and then temperature regulation, and then mood. At the very worst, sometimes blood pressure, balance, and dizziness. And it stays that way for about three weeks. Three weeks of thinking, “Shit, I did it again. I was normal, and I just couldn’t hack it. I fucked it all up again. Why do I keep doing this? Why can’t I be normal? I hate living like this, but I just can’t fix it. I’m a failure as a human being. Literally.”
It’s going to be hard work to fix it. I’m partially writing all this up just to say, “hey, if you’ve messaged me in the last two weeks and I haven’t answered, it’s not that you don’t matter to me, it’s just that I kinda can’t right now.” But finally, finally, after 28 years, I don’t have to try to fix it alone without a clue what to do.
Hearing someone with authority confirm that I was right that something really and truly happened incorrectly in my body, feels like a literal weight off my shoulders. It feels easier to breathe. It feels easier to be.
I think that discounting your own analysis of yourself, especially as a woman, is what we’re all taught to do when it makes things easier for other people, and it’s a very sticky trap to be caught in. Getting back to a place where you feel worthwhile enough to mention that you’re struggling is like swimming through tar. When all of your energy is going into just trying to slog through the things that other people can see, trying to manage and handle the issues that are invisible to others becomes something that isn’t worth the expenditure.
Choosing to proceed like I felt like my life was worth trying to save and make better felt, and still feels about a month later from that initial appointment, like performance theater. Everything being on the knife-edge border of too hard, for so long, makes optimism into a thing that I can act more than I can think. My plan right now is to fake it until I make it, because from what I can tell, that’s kind of all I can do. Once I can get the treatments started – once my circadian rhythm cycles around to match up with daylight and sunset, basically, and we start trying to trick my brain or my ocular nerves or my eyeballs or something into understanding those stimuli – all I’ll really be doing for the rest of my life is faking being healthy until, maybe, I get there.
But here’s the thing: when something is wrong, and you don’t know what, you spend a lot of time studying what ‘right’ would be. And I think that most people are faking it. Some are just better than others.*
*(If I’m wrong and being totally functional in every way 24/7/365 is actually so easy it’s beyond thought for most people, don’t tell me. At least for a while.)
But even thinking, even choosing to think, that everyone has some trouble with life doesn’t mean that I should have let things slide so far for myself. I wish that I could tell my 18-year-old self, well, a lot of things, but one of them would be that continuing to try to advocate for herself would be worth it. Growing into believing that it wasn’t didn’t cause any of the problems that I have, but it also meant that all of the successes or achievements I’ve had have been later and more hard-won and less triumphant than they could have been.
Feeling worthwhile shouldn’t become something that you consider a fluke.