TW: chronic health, eating disorders, images featuring needles
I like to joke that I’m a collection of slightly broken parts.
It’s a joke except it isn’t.
It’s one of those things you say with a laugh because if you say it this way, you won’t feel broken (except some days you feel broken anyway).
I’ll be twenty seven in a few months and I don’t know what it’s like to be a healthy grown up. The last time I was healthy – actually healthy, not doing my best with what I had – I was twelve.
I measure my life not in years, but in medical status.
It didn’t happen 5 years ago, it happened the first time I was misdiagnosed with cancer. Or the second or third time (5 & 3 years ago).
I met my partner a few days before getting so sick I had to drop out of school (5.5), my Essex basement was the last place I was healthy enough to live in on my own (4).
It happened the year I had top surgery (6). Or throat surgery (4.5). Or the second throat surgery (3). Or my hysterectomy (1). That was when I learned to give intramuscular injections, a year later intravenous ones.
When I was diagnosed with depression. With anxiety. With PTSD. With bi polar. With cancer-that-never-was. With tumors-that-may-have-been. With a sensory disorder. With having “been fixed”. With “it’s all in your head”. With “we can’t figure out why you’re feeling that way so just go home”. With “we don’t know how that effects trans people”. With this is far from an exhaustive list.
When I went to the doctor four times a week for two years. When I could only drink liquids for a year. When they gave up trying to figure it out; when I gave up trying to figure it out. When they told me I was “fixed”. When I thought I was finally better. When that didn’t last.
When that never, ever lasted.
It was the end of a conference and I was catching up with someone I knew from years past.
“Can I ask you a question?” they started, several minutes into our conversation. “Your bio says you’re disabled, may I ask what you have?” We had been talking about our mental and physical health problems and how that’s been impacting our kink, so this question made sense for the conversation but I didn’t know how to answer it; I never do.
I only recently started publicly stating that I’m disabled and/or chronically ill, and I’m still not fully comfortable with it. Not because I’m ashamed or that I think there’s anything wrong with it, but because of the age-old worry about if I “count” or not. If I’m “actually disabled” or appropriating. It doesn’t matter that my team of doctors all agree that I’m disabled, or that some of my symptoms have been with me my entire life, I have no visible symptoms, and I don’t have a quick answer when people ask.
I don’t have a thing to tell; no one big thing that impacts my health and my life, I have a list of smaller things that build on each other and compound – each on their own doesn’t make much of a difference, but all together is a different matter.
Thus the “collection of slightly broken parts”.
People don’t want to listen to a list when they ask about your disability, they want a quick answer to put you into a box or, at best, to figure out your access needs. But it isn’t always that simple.
And honestly, this makes me doubt myself more than I should.
Do I give them a list of how my body has slowly stopped functioning properly (sometimes because I’ve done something wrong, sometimes because life happens)? Do I say something vague and hope they drop it?
I may be a bunch of broken parts, but I try not to let myself feel broken. Listing it all out, one after another, makes me feel like I am.
It’s been a long couple of weeks, I’m burnt out and sad and have a couple hard conversations that I need to get through before I can really rest.
I start thinking about what I need to say and how these talks will go and I feel my blood pressure rise as I become emotional. I struggle to control myself, quickly. I know what will happen if I “allow” myself to become overly emotional. But it’s too late; I got worked up and I can feel my throat closing already. I hear my doctor’s voice telling me it’s “all in my head” and I wish that I could tell my head to just get over it, but that’s not how it works.
I struggle to eat for a few days because my throat won’t work well enough to swallow anything solid. I hope that this time only lasts a few days.
I hope that the combination of emotions, health flare up, and lack of ability to eat won’t make me accidentally relapse into anorexia again.
Is it a relapse when you’re too sick to eat but a part of your brain, the part where all your intrusive thoughts are, is happy about it?
Is it a relapse when you weigh yourself a bunch to make sure you’re not loosing too much weight from your throat being closed? What about when the number is lower and that same part of your brain likes it? I don’t want this to be my life.
I beat myself up for not having better emotional self-control. I know better by now – if I just DID better, maybe I wouldn’t be in this spot.
I won’t ever know what it’s like to be healthy. I won’t ever be able to experience a grown-up relationship where the person isn’t, in part, my caretaker.
I do know what it’s like to be “too much” because of my needs, my illnesses. I’ve been told that since I became a teenager. I know the look on people’s face when they realize that they met Manic, Fun Taylor and now they’re stuck with…this. That the version of me they met is just one of the manifestations of my illnesses, and that I’m not going to get better.
I used to think I’d get better.
People tell me to worry about those who consistently show up for me, even when I’m sick, and not worry about the rest.
They don’t realize that I can’t do that, that I need to build. I need to do SOMETHING, constantly, to prove to myself that what I take from people – what I will never be able to stop taking – is worth it. To prove to myself that I’m able to contribute something important and worthwhile, even when I can’t speak or stand, to accomplish something concrete as proof that I exist.
I listened to my doctors, I did everything they asked even when I disagreed. I stopped drinking and smoking. I took fourteen to seventeen pills a day, one shot a week, three inhalers, two blood tests, bi-weekly x-rays. I stopping eating solids, or anything spicy or acidic or too hot or……I saw six different specialists, my GP, my therapist, my nutritionist, my chiropractor, my acupuncturist, and sometimes my psychiatrist. I did my stretches, I walked, I remained active. I kept moving, until I no longer could, until I had to move home and spend months in bed. I took up knitting as something to do.
I let them test me, fill me with needles and fluids, examine me, talk to me, talk about me as if I wasn’t there, put me under, tell me to detransition, tell me how good I was doing, cut chunks of my body out.
They told me they would make me better.
They told me they fixed me. That it’s all in my head now.