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.
Comments
Thank you for these reflections, and happy Disability Pride Month! May you be believed and given support and find relief of pain if you have it.
Thank you so much to you all for writing this, it was exactly what I needed to read right now. I’ve been feeling extremely socially alienated by a lot of issues I’ve been dealing with physically and mentally these last few years; things that have been a problem my whole life but that have been really exacerbated by the pandemic. It feels like some long covid type stuff too honestly, but I haven’t been to the doctor in a long time. The only official diagnosis I’ve ever gotten is depression, and the thought of trying to get a doctor to pin down the rest of my complex issues is harrowing, to say the least. I usually just completely leave my body when a doctor is questioning me and then later don’t even remember what I said to them, I think I just instinctually try to tell them what they want to hear so I can leave as quickly as possible, which doesn’t help me at all. I live in a low population area and get state provided insurance, so my options for a doctor are super limited too. I’ve mostly resorted to doing my own research and figuring things out myself. I have a great partner who also struggles with much of the same things I do, so we can’t always be the best support system for each other, but we don’t have much in the way of community. I tend to really forget that tons of other people are living similar stories, that really we aren’t alone, that society is the problem and not us.
thank you all for such candid, beautiful reflections – truly grateful for having had the privilege of reading.
love love love this! I’ve been doing some disability pride family history research- my aunt was born with spina bifida in 1970, the doctors obliquely suggested to my grandmother that sometimes sick babies die, and my gram said “to hell with that” and has spent the subsequent fifty years fighting for disability rights
that legacy meant that my journey of claiming ‘disabled’ as a term was a lot less complicated than many other folks’ and i could move quickly into the angry yelling and self advocacy bit. i really have to echo what heather said about the disability community because damn, people who’ve had my back in ways i didn’t know i’d need!
Thank you all for this.
And especially thank you Heather. I asked for advice about long covid last year and you recommended the Body Politic group. That group has been an amazing community and the conversations I’ve had with people have been incredibly helpful. I’ve had some difficult decisions to make lately and having people share their own experiences has been invaluable in making those decisions and feeling happy with them. Everything you said about community resonates because of that group.
Thank you so much for all of this.
I love this thank you so much! Also, I just wanted to write that I really hope that one day you will cover something of/by/about blind and visually impaired queer folk! Those never seem to pop up in conversations, and of course it is very hard to include everyone, but still I find this is a really big thing that never gets any coverage – actually I can’t find in the archives that autostraddle has ever covered anything about this, but I might just not be looking in the right places. Anyway happy pride month!