Sometimes, I come out of social media pissed off. People who have no idea what neuroatypism is, or what chronic illnesses are, come around and cast their ignorant judgement.

Sometimes, I envy them. Lack of empathy notwithstanding, they have the luck not to know how it is, and their lives must be at least a tiny little bit easier than ours. Privilege.

I won’t cast stones, I was privileged at some point too, and I was probably just as judgemental as they are. Except now I’m on the other side, and I see it all with more clarity.

And that clarity is something that weighs a ton on me lately. Because I’m at the end of my strength, and yet undiagnosed. Somehow, because women, and even more older women, are rarely diagnosed. Because fat people’s health problems are always put on their weight—of course, according to too many doctors, fat people don’t ever get sick, only their laziness and food addiction is to blame.

Well, I have a plethora of problems. They’re all intricately related. And I’m burned out, man. I can’t anymore. Doctors don’t want to hear it, they all blame it on my weight, or on the diabetes. Even when it’s not a related symptom. That is, when they even take the time to hear me out.

I’m pretty sure I am autistic. Maybe even AuDHD. I went to see a neuropsychologist to take some tests a few years back. Of course, tests being oriented for the diagnostic of young boys, and me being a middle-aged woman back then, they didn’t substantiate me being anything other than normal. At the exit assessment, the neuropsychologist said I might have overcompensated autism, but that the test results didn’t place me into that category so he couldn’t add it to the report.

I was just shy of a gifted diagnosis too. Verbal skills matter in the assessment of IQ, so I was just in the superior bracket, not the gifted one. Does it matter? No, but it’s another piece of the puzzle when it comes to my (I believe) neurodiversity.

I’m pretty sure I have C-PTSD. It’s something that no one will diagnose, so I just have to make accomodations for myself, and avoid mentioning it because people—and doctors—look at me like I’m looking for excuses.

I’m also pretty sure I have another chronic illness. I have hidradenitis suppurativa, but I’ve had it for years now. I know how it is like, and it doesn’t explain all the other symptoms. The diabetes doesn’t either.

I understand that the accumulation of problems makes me look like a nut, a hypochondriac in the eyes of doctors. I don’t want to diagnose myself, but I have to do something when no one cares enough to look into what I could actually have.

Why being diagnosed matters to me

It shouldn’t. I am a grown woman, at the age where I can pretty much decide everything for myself. I have a privilege position where I don’t have to want for anything. I could just say “fuck it” and just… well, be. I don’t have to prove myself to people.

But there is a financial matter. If anything happened to my husband (Universe forbid, how awful that thought is!), I wouldn’t be able to afford our house, groceries… anything, really. Going back to work is not an option—I’ve been out of the workforce for more than twenty years, and since my health is down the toilet, I couldn’t even work a day job to pay the bills and put food on the table.

Yet, it goes deeper than that.

From a psychological standpoint, it’s hard. It’s almost impossible already to deconstruct the capitalist mindset when you’ve bathed in it for decades. So it’s horrible to be unable to work and earn money. It’s horrible to feel useless.

It’s also hard to allow oneself whatever accommodation you need. Somedays I feel fine. I can walk, I can stand, I can do things. Some days, I can’t. I feel light-headed, like I’m going to pass out. My limbs are heavy, I ache all over. I have an abnormal fatigue. It’s very hard to justify to myself (and the world) that I need a cane. I have a special cane that transforms into a seat when I need to sit down. Without it, I would have passed out many times when we go outside. It’s been life-saving.

I still feel guilty using it. Like, because I don’t have a diagnosis, I don’t “deserve” an accommodation. People around look at me weird. I feel the judgement in their eyes. “Why the fuck is she using a cane at her age?” “Probably because she’s FAT.”

By the way, fuck you with my weight. I’m at the lowest point I have been in more than twenty years. I eat the healthiest I’ve ever eaten. Stop the fatphobia, okay?

I can’t exercize. I feel worse after exercizing, and you can’t exercize chronic fatigue into feeling better with time. Fucking exercizing makes me fucking worse. Fuck you and your “you need to exercize”. Also, how do you want me to exercize when I feel like fainting just walking around the house?

So, it’s not just a “other people” problem. It’s a “me” problem too. I have stopped waiting for the medical field to care about me. I have also stopped looking for outside solutions. Reading about fellow chronically ill people like me let’s me know everything I have to know: no one can help me. There is no solution, no miracle med. I guess I just have to say in that void, where I don’t know exactly what I have, and just abandon all will to feel better at some point.

I get so infuriated when people around me say “it will get better” or “hope you feel better soon”. I know they’re not ill-intentioned. It just is another time where I have to fight for myself, justify, explain, and feel it’s falling on deaf ears. They cannot fathom that there is nothing to be done. They cannot accept that this is my life now. I can related—I cannot accept it either. But is it what it is.

What now?

Now, I need to work on:

• tracking my symptoms (which is one of my goals this year), to hopefully at some point be taken seriously by doctors,
• my mindset—I need to find ways not to be crushed by the depression brought by my health and mental health struggles,
• educating others, here or IRL, because I can’t keep living in a world where I am not understood.

It’s not much. I don’t feel confident this will make any change towards anything good. But I gotta try, right?