In 2021, I was diagnosed with two chronic illnesses. I’d been living with one of those illnesses for my entire life, but doctors kept telling me that my symptoms were either my fault or “in my head.” Just before I turned 31, my girlfriend — who, by the way, is NOT A MEDICAL PROFESSIONAL — figured out exactly what I have. How? She actually listened to me describe my symptoms and took the time to research them, unlike the many doctors, specialists, and physical therapists I’d seen throughout my teens and twenties.

This is a common experience for chronically ill people — we’re constantly gaslit by the medical system. When our illnesses can’t be easily identified, or they’re “too complex” to treat, we’re sent home to figure it out ourselves. Then, if we’re lucky, we can bring our own research to our doctors. Some medical professionals might be open to hearing our thoughts, but from what I can tell, those doctors are rare. I’m lucky that my primary care doctor was open to looking at my research and sent me to a specialist. I’m sure my privilege as a thin, white, college-educated person played a major role in that.

I wouldn’t say I’m “proud” to be chronically ill — I have a genetic mutation I didn’t ask for, and it’s mostly really annoying — but I’m definitely not ashamed of it. It’s been helpful to finally be able to name my illness and have the right language to describe my symptoms and needs. I used to think I was being “needy” or “difficult” if I had to do something differently than the people around me. Now I can say, “Hey, I’m chronically ill, so I need [blank].” Sometimes “coming out” about my illness empowers the people around me to advocate for their own needs, too. And by being open about my illness, I’ve met other people who have the same illness!

Finding community has been incredibly important to me, not just for mental health reasons but for physical health reasons. Even though I’ve had a team of doctors say, “Yep, you have these chronic illnesses,” they’re not very informed about how patients should manage the kinds of symptoms I’m dealing with. I’m a freelance writer and editor and don’t get health insurance through any of my jobs. I have to buy my own insurance through the marketplace, and the plan I can afford is pretty limited. I can’t easily go to another specialist and get a second opinion. Even if I could, my illnesses are under-researched, so the chances that I’d find a doctor who A) knows about my illnesses and B) is actually up to date on the latest research are slim. Medical professionals have given me a lot of bad advice, so I rely on my online network of chronically ill people when it comes to making decisions about my symptom management and care.

Getting diagnosed with chronic illnesses during a global pandemic has been tough. I can barely write about the disgusting ways in which institutions, families, and individuals have failed disabled and chronically ill folks, including people I love. As COVID continues to ravage the US — a country that had EVERY OPPORTUNITY to put adequate safety measures in place — the disabled population is going to grow significantly. I don’t think the US is prepared for that.

Even thinking about going to a doctor outside my psychiatrist (a black woman who has always listened to me ever since I stepped into her office years ago) makes me want to run face first into a jagged tile bathroom wall.

I figured out I was autistic about five or six years ago while in intensive outpatient therapy. My therapists were like, “You’re doing everything you’re supposed to do. You’re doing it well. Why aren’t you getting better? What are we missing?” and I shrugged and was just thankful that I didn’t think about death every two minutes like I had been all my life.

I was scrolling through Tumblr and came across Autistic Traits Checklist for AFAB People (the person on Tumblr has taken out the gendered language from this post, I believe) as well as a Youtube video of a black girl who explained that she didn’t talk until she was twenty-one because she was autistic. Both were incredibly important to me. I remember watching that Youtube video at like 2:47am one morning and being terrified, thankful, excited, and amazed that there was another black girl who knew what it was like to be me. I shared with two people I trusted a lot at the time, my individual therapist and my mom. Both reacted like sighs of relief had turned on the lightbulb of their understanding of me. My mom thought I’d been autistic as young as four or five, but there were not nearly as many resources to help her explore that and get me a diagnosis. Honestly, it’s probably for the best. Even though I struggled terribly, often to the brink of suicidal ideation, that still feels preferable to what could’ve happened to me as a black girl diagnosed autistic in a world that already hates and violences and kills black girls without further intersectionalities. I think our ignorance saved me in many ways, and I hate the world every single day for that.

I’m diagnosed with Complex Post Traumatic Disorder (C-PTSD), which I completely forget about somedays because I cannot imagine myself, this body, not traumatized. To be honest, I cannot imagine any black person not traumatized, so I don’t even delve too hard into that. It feels like something I know I will be living through forever. It’s even been passed down to me by my family, so what else is there to say about it, but that exists, and it exists in me? I’m also diagnosed with Premenstrual Dysphoric Disorder (PMDD), which makes me extremely suicidal at least three days every month, along with cramps that have convinced me to look up how to remove my uterus myself, damn the consequences of it. I need to get checked out by a doctor because cancers, fibroids, and autoimmune diseases run in the family. I’m nearly positive I have an autoimmune disease. But the way the supposed health system barely helps white disabled and white cisgender straight disabled people shows me that I’ve got to save a fuck ton of energy to start and see that process through. My primary doctor is a black woman, and you’d think that would be half the battle, but I believe I’ve felt more validated by a straight white doctor than I have by her. That alone makes me scared to try to find someone else. Like, what if this is the best I can get?

The intersection of my disability and my queerness is, of course, rooted in my blackness. Every time I’ve tried to look up one without the others, I’ve returned unwhole, unhomed. I’m still at the beginning process of holding these intersections by making sure I use all the words and don’t allow others to acronym my whole self. I would roll my eyes when I’d think, I’m a disabled/autistic black nonbinary lesbian, because all the invalidations and violences that come along with each one separately is heavying — but altogether, it feels unsurvivable. What makes living possible, of course, is community. That people like me, people who care about me and I about them, write and speak and art and blog and music and podcast about these intersections. So I feel less alone fighting out here. Community in blackness, in queerness, in disability, in the intersection of those three is what allows me to find home and voice in black pride, queer pride, and disabled pride. In all of these, I feel that’s true, that “we are all just walking each other home” (Ram Dass), and these hands in mine, shoulders bumping against my own, chilled breaths by my chest and my ear, are the only ones I’d want doing this life beside me.

I recently watched a YouTube video where a person tried to guess whether other people were born with a disability. I realized that I didn’t know my answer. I was born with a mess of genetics and joints that pretended to function for a long time. For a while my super flexible joints made me a good dancer and someone who could be good at yoga with minimal effort. Sometimes my joints would dislocate, but overall my flexibility was seen as a good thing. Then I started getting injured too easily; my joints were too flexible to keep me together. I sprained a joint at least once a month and was regularly out of gym class on medical leave to the point that the gym teachers thought I was lying. Everybody thought I was lying. In my early 20s, some of the other things lurking in my genes started to kick in, too, and I got very, very capital-s Sick for several years. Chronic illnesses tend to travel in groups, so more piled on over time. Now my body often feels like that audio from TikTok/Instagram reels that says, “technically everything works, but it’s broken and mangled and really unpleasant.”

It took almost a decade to get a few diagnoses, and there are some I’m still working on getting. A lot of medical trauma along the way gave me C-PTSD and regular panic attacks in doctors’ offices. While fighting through the US medical system, I also had to chip away at my internalized ableism. I had to confront that the word disabled made me feel less than, imperfect, a failure, a taker, a loser. The worse my health got (though it has improved dramatically, thanks to proper diagnoses and treatments), the more I started to accept that even if I didn’t want to call myself disabled, I couldn’t change the fact that I was disabled.

For me, coming to terms with disability was very similar to coming to terms with my queerness. Both were things I had tried to ignore for a long time to protect myself. I had to confront the judgment and bias that had been taught to me my entire life by the church, the media, and my peers. I had to get comfortable saying something out loud that I had been ashamed of for a long time. Ultimately, with both queerness and disability, I gained a community and sense of self when I finally embraced these identities. Now I have a pretty amazing community of disabled and/or queer people on social media and virtual support groups who make me feel a little less alone during a very alienating pandemic.

A couple of months ago, my wife shuffled me into the back of an Uber and forced me to the emergency room. I was in excruciating pain. I felt like an alien was literally about to explode out of my abdomen. I couldn’t sit still. I could hardly stand up, my hair was drenched in sweat, and by the time I was checked into the hospital, I had sweated all the way through my shirt. I was on my way to sweating through my wife’s shirt too, because I was resting my head on her stomach as she stood in front of my waiting room chair, looking terrified. When the nurse called me back and did my vitals, she asked me what my pain level was, and I confidently said, “seven.” My wife said, “Absolutely not.” And I repeated myself, with even more conviction: “Seven.”

I explained later that this was what I’d learned in the past two and a half years since I got Covid, which turned into Long Covid. If you tell a medical professional you’re a ten, they’ll write you off as hysterical, as just some dramatic woman. Plus, there’s nowhere to go if you say ten, and pain can always get worse. The only way to get nurses and doctors to treat you with the care you need and deserve is to seem: friendly (even cheerful!), completely reasonable, nowhere near tears, and in pain that’s no more distressing than a seven. Anything more than that, anything less than that, you can forget anyone taking you seriously. I left the ER late that night with plans to have my gallbladder removed because it was bursting with gallstones, apparently. But if I’d come in wailing about being a ten on the pain scale, I’m confident I’d have left with a diagnosis of gas and anxiety.

Since becoming disabled by Long Covid — and the various autoimmune and autonomic dysfunction issues it brought—this is how I’ve learned to navigate my entire life. It’s less extreme outside medical settings, but the principle is still the same. Most people are barely equipped to deal with the fact that one day I was a bright and brilliant ball of relentless and resilient energy. The next day I became a person who loses the ability to speak if I stand up five minutes too long. If they knew the actual extent of physical pain, cognitive dysfunction, and deep cellular-level fatigue I deal with on a daily basis — well, the truth is most people simply would not believe me. You gotta keep it lower than seven to keep people in your corner.

In addition to just not believing me, there are lots of other reasons people have a hard time accepting my new post-Covid reality. The main one, I think, is that if people acknowledge that this can happen to me, they have to recognize that it can happen to them too. In a second. In a heartbeat. And that’s too scary to even look at. And if people accept what happened to me, it also forces them to grapple with the fact that their safety and well-being, their best interests, are not, in fact, at the heart of the work of the institutions we’ve placed our trust in all our lives. Not the CDC, not the White House, not state lawmakers, not even local hospitals. Some people within those spaces? Sure. But not the institutions as a whole. It also takes a lot of selflessnesses to believe me because it means you’ll have to rework your entire idea of what a relationship looks like with me because I just cannot do all the things I could do before. And if you experience me in a professional context, it means things are going to get harder when you work with me because I need accommodations that are going to require more work, more time, more empathy, and more patience on your part. There’s a level of personal responsibility that comes into play when you acknowledge the reality of the disabled people in your life.

It’s just so much easier to not believe me.

But my gosh, the disability community. I have never, in all my life, in all the spaces and clubs and groups and organizations and churches and businesses I’ve been a part of in my 43 years on this earth, been part of something that compares to the acceptance, the empowerment, the whole-hearted and open-handed belief, the collective care and the collective fight, the space to grieve and the space to celebrate, the space to be wholly yourself that is the disability community. The disabled people who were already in my life were already some of the coolest people I’d ever known, grounded with conviction and with arms wide open. To be surrounded by other disabled people, to be counted among them, to be seen and believed, there’s a peace there that I have never known before. With the exception of my wife, sister, and a very few very close friends, I have never been able to just let my guard down the way I’m able to do with my disability community. They make me so proud. Their kindness, their power, their honesty, their advocacy. I guess that’s what it’s like when all the bullshit is stripped away, and you’re left with nothing but hope in one hand and medical bills in the other. The distillation of your humanity. I will never be able to fully express my gratitude — and yes, huge pride — for being part of this group of people.

I fit the definition of disabled in so many ways. Still, I don’t think I would have ever used the word to describe myself if the disabled community hadn’t given me perpetual permission to do so — not even when my doctors told me I was disabled, not even when they told me to apply for disability, not even on the days I literally cannot stand without my cane or remember the word “banana.” Even being part of this roundtable feels like a gift. I hope one day I can make this community as proud as the pride they’ve infused into me.