I’ve been making space for my fatigue for over a decade–only to discover it’s a disease with a medical solution.

For the last several years, there’s always been a convenient excuse for my omnipresent fatigue. An illness. An injury. Autistic burnout. Age-related attrition, perimenopause, vitamin deficiency, the list goes on. But last year I finally realized that I had run out of things to pin it on. My fatigue was persistent, unimproved by sleep and made drastically worse by the lack of it. I had tried every possible solution and nothing had moved the needle. I finally realized it could be–had to be–something medical.

Fatigue affects autistics differently. Autism is both a source and an exacerbater. Dealing with the neurotypical environment outside our front doors requires a considerable energy investment that non-autistics don’t have to make and rarely understand. Not having that extra energy makes everything worse: sounds, smells, colors, lights, feelings, every environment is louder and more intrusive, demanding energy to block it out. A trip to the grocery store, or the doctor’s office, or even getting out of the car to pump gas is a cacaphonous and exhausting ordeal.

I would get home from any one of these and literally be too tired to talk. I’d go through periods where I was so blasted I could barely stand to be touched. And though I would try to recharge by taking days, or sometimes weeks off, with minimal sensory input, I never improved above barely functional.

Precious few believed me when I said my body wasn’t right, that I wasn’t supposed to be like this. Doctors blamed it on my medications (largely unchanged over the last decade), my hormones or lack thereof (can it really be both?), vitamins, diet, my pillow, exercising, not exercising, all couched with the suspicion that I was exaggerating or making it up entirely, that it wasn’t real, or wasn’t as bad as I was making it sound.

What’s worse is on some level, I believed them. It wasn’t until it was so bad that I was exhausted all the time beyond all reason, that I began to suspect a medical cause. Helpfully, other symptoms also showed up: the hair on my legs stopped growing, my toes turned white when my feet were cold, my mouth and eyes were dry and sticky, I was thirsty all the time no matter how much a drank, and I had to urinate something like ten times a day. This was lucky, because I’ve learned that physical symptoms are the only thing doctors believe when it comes to women’s health (and sometimes not even then).

The doctor that finally discovered I had low thyroid had also not believed my tiredness wasn’t associated with my anti-anxiety meds. Luckily, my history of severe chronic pain meant I was past over being treated differently because I’m a woman. I refused to give ground and pushed hard for the blood tests “anyway.” When they [barely] showed low thyroid function, I had to push again, because the basically non-existent dose the doctor started me on only moved the needle enough to tip me into the lowest you can possibly be while still being in the normal range.

“That’s not good enough,” I remember telling him. “I don’t feel any different.” I insisted on a higher dose, which he reluctantly granted, and here I am, feeling better than I have in over a decade. (Not in less pain though–thyroid treatment doesn’t fix everything.) It felt like it happened overnight. One day, I was the same as I’d been. The next day, it was like a second engine kicked in. Suddenly I had energy. Compared to what I’d had before, it felt like lots and lots and lots of energy.

I didn’t realize the sheer volume of consequences that crippling fatigue creates until they went away. The most noticeable improvement, oddly enough, is that I can sit in a waiting room with other people. Before, even sitting next to the quietest stranger felt like my skin was peeling off. It was worse if the room was crowded, and impossible there was other noise, too, like TV, phones on speaker, talking, laughing, coughing. Breathing.

And while I’m well within my rights to be angry about all this, I’m mostly sad. And demoralized. Here I thought I would benefit from recent cultural breakthroughs on women’s health, on disabilities like autism, on chronic pain, even perimenopause, only to discover everything is still the same as it’s always been.

Nothing has changed. The ignorance about autism, the still-very-real sexism of doctors (yes, even the nice ones), the amount of settling for less and less I’d reluctantly adjusted to because I thought it was just part of who I am… nothing. I am not the weak, nonresilient person I thought I was. I just have a thyroid disorder, rare but not that rare. But if not for my decade-plus experience with the train wreck that is our health care system, I might never have found out.

A thyroid disorder, an autoimmune and very real syndrome had probably had been going on for some time, buried amidst the myriad of other health issues that cascaded from my acute onset nerve entrapment back in 2013. For 12 goddamn years, the gaping abyss between how I felt before 2013 and how I felt after had barely narrowed. And then one and a half of these itty-bitty tablets per day came along and literally changed my life.

I’ve learned one thing, though. Trust your gut. If something in your body feels wrong, push hard until you get an answer. Screw the people telling you it’s all in your head. It isn’t.

Don’t give up.