My body doesn't work like that
A gentle rant
As many of you know, I’ve been processing new information about my health these past couple of months after undergoing autonomic testing which showed I most likely have POTS or some other dysautonomic disorder. I’m still waiting to see the neurologist to actually get a diagnosis and talk about treatment/management, but they are booked out to July so I have some time with nothing but Google and my own ruminations.
I have also been seeing a therapist who specializes in neurodivergent folks, and she has recommended me to a psychiatrist for ADHD testing and treatment. This is added to my slow realization over the last few years that I am autistic, which means that I am most likely AuDHD, which is in many ways a very different thing from being just autistic or just ADHD.
And just to nicely round up my big health-paradigm-shifts to three, I also went on Zepbound, a GLP-1 compound, a few months ago after researching and thinking about it for years (and of course talking to my doctors). For me it was not so much a matter of wanting to lose weight as it was looking for a tool that would prevent the cycle of significant weight swings I’ve experienced since my teens. After years of trying to dismantle fat-phobia and the profound effects it has had on my life, as well as immersing myself in the activism of other fat folks, this was a complex decision, emotionally, mentally, and physically. (It was also a very personal one, and I am not here to advise anyone either for or against it.)
All of this has taken a lot of processing. And one thing that I’ve been thinking a lot about, is how all three of these things — being AuDHD, having POTS, and having a body that needed a different approach to weight management — were things that I knew about myself since I was very young. I didn’t have the language or the diagnoses, but I knew, in so many different ways, that my body didn’t work the way teachers, doctors, therapists, coaches, etc. were telling me it did. So much of the advice I was given just didn’t work for me, and I grew up with such a complicated combination of fierce self-protection and self-advocacy, and also the sickening feeling that I was stubborn and lazy and disobedient for it not working.
I feel like the past few weeks have been a montage in my head of situations where I was trying to explain to someone in an authority position that my body didn’t work like that. My brain didn’t work like that. I believe you, I’d say, that that’s good advice for many people. But it doesn’t work for me. And often it causes harm that I can’t explain. I didn’t have the language or the diagnoses, but I was good with words, and I tried SO hard to explain it. When I look back now I’m amazed at how articulately younger me was able to describe AuDHD, POTS, and my attempts at dieting and exercising, without actually knowing anything about those conditions.
And not only that, but when I couldn’t get advice that applied to my brain, to my body, I figured so much out on my own. Just as one example, I tried for years both to do group sports and to exercise on my own, but kept hitting physical walls. Then in college I finally realized that I just needed a different kind of warm up. I needed to exercise briefly, then rest for a few minutes, and then my body would work. Then I could do a longer workout without feeling like I was going to black out. Now I finally have an explanation for that — my nervous system wasn’t sending the right signals to my blood vessels, and the blood was pooling when I jumped right into exercise, forcing my heart to work harder to pump it up to my head, making me dizzy and tired. But even before I knew, I knew — My body didn’t work like that.
And the same thing with with academics and work — get a day planner! write things down! Listen, that was great advice, but my brain didn’t work like that. What I really needed was rest and more effective techniques to calm my nervous system.
Or with weight loss — eat less and exercise more! Okay, yes, I understand the basic calories-in, calories-out math, but all that advice got me was alternating eating disorders. What I really needed at the time, what so many of us needed, was to remove rules and morality around food and learn to trust my own body’s signals and intuition.
Listen, I don’t blame my teachers, my doctors, my supervisors, my therapists. They were doing the best they could based on the information that they had. And I’m not trying to make excuses or make myself into a victim. I’m just saying, I knew. My body knew. In some ways it’s like feeling like you’re an alien all your life and finding out that you actually are. Like Superman, you have weird strengths (you can fly?! and see through things!) and weird weaknesses (augh, Kryptonite!) and you don’t know why. But you know, your body doesn’t work like that.
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so often they would say to me,
"try harder" but, baby
i was always trying my hardest
sometimes it worked and
sometimes it didn't
but there was no such thing
as laziness
within me
everything wanted
to do well, to be good
skillful and pure
accomplished and wise
and every failure
felt like sin
so when you said to me
angry on my behalf—
"you are doing the
damn well best you can"
the "damn" in that sentence
felt nothing short
of holy
***
this mile
i see you
doing the damn well
best you can
eking out a living
and a life
in the rocky soil
you're given
don't listen
to the backseat
drivers
who say
"you should just
you should just
have you tried?"
goddammit
have they tried
walking this mile
in these shoes?
they should just
Both poems from my book, Open Things.
If you can relate to what I’m saying, I’m sorry. I see you, and I believe you. Let’s keep holding space for each other here for the processing.
With love and hope,
Jessica