Today is Long Covid Awareness Day. It’s also the three-year anniversary of the beginning of my own Long Covid journey, which still continues. This article was originally published in August 2020.
I was already in a hospital the first time I realized I needed a wheelchair. A sprawling full city-block of a hospital in midtown Manhattan with a lobby that looks strikingly similar to the cavernous Ministry of Magic atrium. My neurosurgeon had sent me in for an emergency MRI three months after I’d been diagnosed with COVID-19. Death or a two-week flu were the only options for people who contracted COVID, according to the Centers for Disease Control, and I wasn’t dead so surely lingering coronavirus wasn’t the thing that was causing my body to go so berserk. Racing heart, palpitations, stroke-high blood pressure, chest pain, weak legs, fatigue that felt like my body was made of lead, nausea, loss of appetite, extreme weight loss, shortness of breath, brain fog that caused me to forget how to form sentences, bladder dysfunction, and creeping numbness and tingling in my feet and legs.
It was those last things that caused my neurosurgeon’s alarm. I have what’s called “remarkable” cervical stenosis. When my neurosurgeon first showed me my CT scan and diagnosed me last fall, I thought he meant it in a good way. Exceptional. Impressive. Miraculous. He did not. Remarkable, he explained, in the sense that I have the spine of a person who is 300 years old. And with such a spine, when you can’t remember the word “carrot” or how to turn on the oven, and your legs are tingling all the way up to your knees, there’s a chance your vertebrae are crushing your spinal cord en route to paralysis. It could happen over time, or it could happen right now.
As I stood swaying in the hospital lobby while the nurses and security guards debated what to do with me, I realized I should have taken my neurosurgeon up on his offer to send an ambulance to my house to get me. But I’d already racked up one ambulance ride when my feet initially lost their feeling. An Uber was faster and, frankly, less expensive.
The problem was I didn’t have a positive COVID test or a negative COVID test, because when I’d gotten sick over 90 days before, no testing was available in New York City, unless you were admitted to the hospital, and the telemedicine doctor told me not to go to the hospital unless I couldn’t finish my sentences or my lips were turning blue. But also I still had COVID symptoms. But also I wasn’t there to be treated for COVID symptoms. I was there because my neurosurgeon told me to meet him there. Did I belong in the COVID triage tent? Did I belong in the regular emergency room? Was I a danger to everyone in the lobby? Were they a danger to me? Who did I think I was, anyway, walking in off the street demanding an MRI in the middle of a global pandemic?
“I’m sorry, I hate to be dramatic,” I said, as I waited to see if they were going to let me into the hospital to find out if my spine was squashing the feeling out of my legs permanently, “but is there anywhere I could possibly maybe please sit down?”
There was not. The visitor chairs had been removed for social distancing. I glanced over at the security guard’s stool. “Don’t,” he said.
I decided my only hope was utilizing my gift for defusing tense situations with humor, so I decided to do a Ministry of Magic gag. “Broom Regulatory Control, level six” is what I meant to say, but I couldn’t remember the word “broom.” I started my joke; “broom” fell out of my head; I made the motion of sweeping, then stepping over the handle of a broom, then lifting up off the ground and whooshing around. I heard myself make a vrooooooom sound, like when an airplane spoon is heading toward a child’s mouth.
“Ma’am,” the security guard said, even more apprehensive than he had been, “Have you been drinking?”
I called my neurosurgeon and he sent an intern down to get me.
My COVID onset was pretty normal, in terms of what’s considered normal for a novel coronavirus that shuts down the entire world. I started displaying symptoms a week after New York City went into lockdown in March. Slight chills and a mild sore throat that progressed to chest congestion and tightness, a cough, and shortness of breath. I was really tired and I didn’t have much of an appetite. I got winded just walking down the hallway to the bathroom. Hot showers left me hacky-coughing for hours. It was terrifying — hospitals were overflowing; the only sound outside my bedroom window was the constant scream of ambulance sirens; the death toll skyrocketed every day; the Empire State Building was programmed to flash red like a beating heart as a showcase of solidarity with healthcare workers, but it looked like some kind of apocalyptic lighthouse — but after two weeks, my body started feeling better. Slowly, the band around my chest seemed to loosen, my cough eased up, my breath came back and I could walk down the stairs again.
I thought, “I survived! It really was, for me, just a bad flu!”
But I never got all the way better. At some point, I started to feel like I was relapsing — and then: new symptoms. The heart stuff and lung stuff and fatigue stuff that had me woozy-wobbling that night in the hospital waiting for my MRI, and a whole new kind of panic attack where the adrenaline that flooded my body was so extreme it caused tremors in my legs and arms that lasted for hours.
My startle reflex started operating in overdrive. If a loud noise woke me up in the middle of the night, I’d immediately burst into a panic attack. Nothing I did could get them under control. Not meditation, not medication, and exercise was out of the question — the only way I could get down the stairs at that point was to basically fling myself forward from the top and hope for the best.
The weakness seemed to settle into my bones.
I lay in bed, day after day, week after week, too tired to sit up for more than a few minutes. Stacy made my meals and brought them to me. Each time, I ate a few bites and had to lie back down to gather up enough energy to sit up and eat a few more. I tried to work, but couldn’t make it through a full day, and then couldn’t make it through a full morning. I asked for an extended leave of absence. I moved all of my toiletries from the bathroom to my nightstand. I could hardly manage a two-minute shower.
The telemedicine doctors all told me I’d be fine; of course the virus would knock me out for a couple of weeks, but I’d bounce back in no time. I explained it had actually been quite a lot longer than “no time” and they smiled and thanked me for calling. My primary care physician said it was anxiety. My psychiatrist said it was depression. New York City’s newly opened Longterm COVID Care Center told me I didn’t have antibodies so I hadn’t had COVID. And anyway, my bloodwork was excellent.
“Is it possible,” I asked the doctor, “that this antibody test might not be a foolproof way to determine who actually had COVID? And that you might not have all the answers for this brand new global pandemic-causing virus we find out something new about every day?”
“No,” she said. “Not possible.”
I needed a wheelchair to leave the Longterm COVID Care Center, but I was scared to ask for one. The doctor seemed to think I was overreacting about having a simple flu. I paused and leaned against walls to steady my legs and catch my breath instead. It took me 20 minutes to finally make it out of the building, and as I waited for my Uber, I sat down on the sticky summer sidewalk right in the middle of Union Square.
My neurosurgeon is renowned. In the good way; not in the way that “remarkable” means “yikes” in spinal vernacular. When his team arrived in the emergency room to handle my emergency MRI, everyone stopped treating me like a woman who’d stumbled in and mimed flying a magical broom around in the lobby and started treating me like a quadruple sapphire iridium medallion frequent flyer. Harried nurses who’d been grumbling about demanding doctors behind their backs for an hour were happy to volunteer when my neurosurgeon’s intern announced that he needed someone to help him check my anal tone. Doctors suddenly had time to come by and offer me a kind word. Nurses kept bringing me juice.
It was the most attention I’d had from medical professionals in months, despite having spoken to dozens of doctors about my COVID symptoms by then. I asked every nurse and doctor who came to look in on me if they knew anything about people suffering from COVID long term, about unusual symptoms, about the antibody tests. What I found out over the course of my night in the ER is that doctors and nurses still had no idea what COVID was about, but they all agreed it was weird and getting infected in mid-March at the onset of the outbreak meant that I was one of the first people in the U.S. to be dealing with LongCovid symptoms; I was the science.
My neurosurgeon likes me, as a person; I can tell because in my after-visit notes from the first time I saw him, he wrote that I was “bright and amiable” and transcribed what I told him when he asked if my neck cracked when I moved it: “like an undead lich rising from an ancient throne in his tomb in the empire of necromancers.” I’d been in bad shape on my initial visit for a pinched nerve; I’d lost 70% of the strength in my left arm, shoulder, and hand. He’d told me I could try physical therapy but that surgery was probably inevitable. I went so hard at PT that the next time I saw him and he gave me the strength test, I sent his wheely chair whizzing across the room and smashed him into the wall. I said, “Now, that’s remarkable!”
The emergency MRI showed that my spine was a little worse than last time, not by much. Surgery was not urgent. But my neurosurgeon was still worried about me. He said I seemed heavy, faint, deeply exhausted, muted. And there was still the matter of words slipping out of my brain, pins and needles in my jelly legs, a wildly overactive bladder. He had the ER doctors run a battery of other tests; all of them were clear.
I said, “Do you think all this could be COVID?”
He leaned back in his chair, pinched his eyebrow and said, “I don’t know. But you’re not yourself. So maybe.” He studied me for a long minute and decided: “Yes.”
I knew exactly who I was before I got COVID: a woman disposed to rise to every occasion. A bitch who gets stuff done. The person everyone relies on to do the thing no one else has the heart or guts or fortitude to do. A soft butch holding my family and friends and my whole little world together with nothing but love and tenacity.
I had huge plans when lockdown started. I was going to finish my book, remake our outdoor furniture, grow fruits and vegetables in my container garden, learn to cook Stacy’s favorite pie (strawberry-rhubarb), run a delivery service for my neighbors for prescriptions and groceries, and connect (and re-connect) with my dearest family and friends.
I didn’t get a chance to do any of those things.
Stacy took over doing all the laundry and dishes and vacuuming and toilet cleaning and shopping and cat feeding and grooming — my jobs, the things I love to do, the homemaking projects I’d longed to be in charge of my entire life, the caretaking tasks made my days feel full and valuable — while working day and night from her makeshift editing suite in the living room. The only thing I saw beyond my bedroom walls was the sky outside my window: grey then blue then purple and gold and cinnamon and orange then black then grey again.
Before COVID, my friends and I spent glorious weekends gathered around a table in my living room, sharing meals and wine and stories from our weeks and hours and hours playing Dungeons & Dragons. The real world so often tried to rob us of our power, but inside our D&D campaign we were unstoppable heroes. We saved towns. We slayed beasts. We made an entire queer universe of inside jokes. We moved our game online during lockdown and I told my friends maybe next week I could play, and maybe next week I would feel better, and maybe next week I’d be back to my old self. When I finally told them they should start a new Dungeons & Dragons game without me, that I wasn’t really getting better and I didn’t know when I would feel okay again, I laid in Stacy’s lap and sobbed with such fierce and broken hoarseness I didn’t even recognize the sounds as my own. I told my therapist, over Zoom, in my bed in my pajamas, that I’d only ever heard people cry like that at funerals before.
“I’m losing everything,” I told Stacy. “I’m losing me.”
My neurosurgeon called me on a Saturday, out of the blue, two weeks after my MRI and said, almost giddily, that he’d asked all of his colleagues and finally found something he thought explained what was going on with me: dysautonomia. That same day, during a Q&A with my LongCovid support group, a different neurologist made the same guess. And so I made an appointment with a cardiologist who specializes in dysautonomia and dragged myself back into Manhattan to be disbelieved by another doctor. I dressed nicely. I had all my paperwork in order in a crisp manila folder. I typed out the main words that kept falling out of my head in the Notes app on my phone, just in case. I’d taken a series of videos on my phone of my heart rate and blood pressure using five different devices total, over the course of two weeks.
I started listing off my symptoms as soon as I sat down in the cardiologist’s office, and within 30 seconds, she held up her hand to stop me. Here we go, I thought. She wants a positive COVID swab or a positive antibody test or this is just anxiety or what happens after a cold and buck up and take a nap and you’ll be fine.
Instead, she said, “I know exactly what’s wrong with you.”
I blinked at her, stunned into total silence.
“You have postural orthostatic tachycardia syndrome. POTS.”
POTS is, in fact, a form of dysautonomia. A person’s autonomic nervous system controls all the things we don’t think about, like heart rate, blood pressure, circulation, digestion, body temperature. When people with POTS sit up or stand up, our autonomic nervous systems can’t properly control our circulation, so all the blood rushes out of our heads and down our bodies, ultimately pooling in our feet. This, of course, makes us very dizzy, to the point of passing out, and also causes our hearts to start beating like mad and our blood pressure to go berserk to try to get our blood back up into our brains. It also causes big time spikes in adrenaline, because our fight or flight systems are almost always activated. Our hearts are often in the cardio zone all day long, and so of course we’re exhausted.
POTS can be caused by many things, one of which is a viral infection. I was this specialist’s first post-COVID case; she said maybe I was the first diagnosed post-COVID POTS case in the entire city of New York.
I jumped up when she diagnosed me; nearly passed out; sat back down, hard; and started to cry so hard my tears soaked through my face mask.
“It’s called an ‘invisible illness,” the cardiologist explained, “because you look fine and your tests and lab work also look completely normal. But it affects every single system in your body. And you feel absolutely miserable. Doctors almost always write it off as depression or anxiety.”
Every morning now when I wake up, I sit up slowly in bed and lean back against my headboard. I drink a full liter of water, eat some salted almonds, put on my compression socks for the day, and take a beta blocker for my heart and an SNRI to keep my adrenaline more in check. After 30 minutes, when my body has adjusted to sitting up, I can stand.
Downstairs, I make the first of three Liquid IV drinks of my day and eat a small breakfast. I drink four liters of water, total, and take more SNRIs and beta blockers as the day progresses. I sit on a stool when I take a shower. I sit down at a little portable table to do all the vegetable chopping and potato peeling for our meals. I wrap an ice scarf around me and sit down near the oven to cook. I use my office chair to wheel around the kitchen when I’m putting away groceries or dishes. I use a cane when I leave the house, which I only do for doctors appointments; it folds out into a stool so I don’t have to sit on the ground.
My cardiologist asked me on my second visit how I was adjusting, emotionally, to having a disability.
I said, “Do I have a disability?”
She said, “Well, yes. I thought you knew.”
Before I left for my most recent trip to the hospital, Stacy checked my backpack to make sure I had everything I needed. She tucked my facemask straps behind my ears, and kissed me on the forehead. “If they don’t have your wheelchair ready when you get there, ask for it,” she said. “Okay?”
I said, “I will, I promise,” and smiled with my eyes so she could see it.
Stacy is scared to be overbearing, because I’ve always hated being told what to do. She’s scared to be underbearing, because my brain fog has made my cognitive functioning less sharp, especially in the morning and at night. She’s scared I’ll do too much, because I’ve always done too much my entire life, that I won’t listen to my body, that I don’t even know how to listen to my body. She’s scared I’ll begin to feel angry at her for what she can do that I can no longer do, that becoming a caretaker to me when I’ve always been a caretaker to everyone else will create an emotional wound that will grow and fester.
She watches me open my pillbox first thing in the morning and slowly work out what I need to take right then and what I need to save for later; she asks if I need a hand; she pretends not to notice that I clench my jaw against her offer and the knowledge that, actually, yes, I could use some help. She leaves my bike, my most prized possession and my lifetime beloved hobby, untouched in the living room on its stand, because maybe one day I’ll be able to ride it again.
I’m scared too. Overachieving isn’t something I do; it’s always been who I am. Now that my sympathetic nervous system is misfiring in a way that makes simply getting through the day out of bed an achievement, there’s no energy left to overdo anything.
What will happen to my career now that I can’t show up early and stay late to help our community survive? What will happen to mine and Stacy’s lease now that I can’t keep my landlord extra happy by doing all the yard work and fixing all the leaky, crumbly, broken things in our house? What will happen to my friendships if I never have the energy or brainpower to sit at a table for five hours and roleplay zombie battles and villager rescues again? What will happen to my relationships with my family when talking on the phone wears me out, and I don’t know how to answer the question about if I’m feeling better? How is it possible that Stacy won’t grow to resent me when I can’t even walk two blocks to pick up my own prescriptions, when my newly diagnosed illness is already eating into our savings, when I can’t stand in the hot kitchen long enough to make our favorite soup, when I can’t even really carry on a conversation at night because my brain and body are so spent?
What if I’m not disabled enough to use the word “disabled?” I’m a person with a huge platform; what if I talk about disability in the wrong way, or miss the mark on my advocacy because it’s (shamefully, mostly) new to me? What if I hurt people who are already hurting with my naïveté, or accidentally dishonor the work of the queer disabled activists who came before me, some of whom I love and cherish as dear friends? What if I can’t find the balance between hope and acceptance? What if I become one of the 30% of POTS patients who are too disabled to work at all?
Is a soft butch a soft butch if she can barely hold even herself together? Is a soft butch a soft butch without her swagger?
Yesterday, I called Stacy on a banana-phone; walked from the kitchen into the living room where her office is set up and ring-ring, ring-ring-ed. She looked up from her computer monitor and saw me holding a banana to my ear and quirked her eyebrow. “Hi yes,” I said, “This is the last banana and I was wondering if you were planning to go to the store for more bananas in the next few days and so I can go ahead and use this in my smoothie or should I save it for a banana emergency?” She wanted to be annoyed with me because I was interrupting her workday and she was on a deadline. She wanted to be miffed because I’d pulled her out of her creative flow. But her mouth twitched into a smile because I was asking her for something I needed and could not do for myself, and I was being ridiculous, and it’d been so long since I’d been ridiculous. She said she’d run out to the grocery store tomorrow. I thanked her for her time, hung up the banana-phone, and turned it into a microphone to interview our cat Socks about the rumors that he’s a marshmallow head.
I’m scared, but I’m alive.
I’m scared, but I’m not broken.
In LongCovid support groups, we say our name and where we’re from and how long we’ve been sick. I’m Heather Hogan from New York City. Week 19/Day 133.
Week 156/Day 1,095 Update: You can buy a copy of The Long Covid Survival Guide, which I contributed to, if you’re looking for a good resource to help yourself or a friend/family member suffering with Long Covid. It might also make you happy to know that while I am still fighting Long Covid, I was finally able to get back on my bike!
Heather, thanks for writing this. I’m really sorry for your suffering. Sending a big germ-free hug and best wishes for your recovery.
Thank you for sharing your journey, Heather
💜💜💜
Thank you for sharing your experience. I’ve had POTS for years and lived with dysautonomia since childhood. It was dismissed as everything from anxiety to hormones until a few years ago. All the future fear you name is with me daily and it was painful but very helpful to be mirrored. I’m unable to articulate more but thank you.
Heather, we love you. Thank you for sharing your story.
Hi.
Im Mél, week 21,I totally feel you. I feel like I’m cheating my 6 year old out of her mother. :( be well.
Ugly cried when I read this. I don’t know what to say. Thank you so much for writing this, sending heaps of love from one big heart to another.
Heather, you’ve been one of the writers who’s helped me the most with navigating who I am and who I want to be. Thanks so much for writing this. I’m so glad you’re still here.
Ooof, as someone who’s been dealing with POTS for 13 years now following a bad flu when I was 18 this made me bawl. The disbelief from medical professionals is so real all because the standard tests come back fine. And so many people, even close family, don’t believe the reality and how much of your life and everyday actions can be affected by your autonomic system not working properly. Invisible illness is right, it’s become more talked about over the last decade but there are still so few doctors, even cardiologists, who truly understand. Big strength to you, I’ve been able to bike ride since being diagnosed but it’s taken a lot of work on my core muscles and leg muscles (Pilates is truly great, especially as you can lie down for a lot of it), but I still need recovery time after any exercise and that includes nothing taxing on my brain and no jokes that I need to interpret unless the joker wants to be snapped at because I just can’t get it at those times. Lots of love, thank you for using your platform to speak about this.
Damn Heather, why did you have to go and make me cry? I’ve been following all your updates on Twitter since you got sick and I’m so glad you’re being ridiculous again. This shit is so scary and uncertain and it’s so hard to keep strong. I hope you know that people like you and your words and your story mean a lot. Stay alive
I still remember reading my very first Heather Hogan article on AE. You quoted one of your favorite lines from The Tale of Despereaux. I was hooked. I’m not one to write comments. I enjoy anonymity. But I just have to say, I still hear you. I still feel your energy in every word you write. Thank you for continuing to share yourself with us. You’re still you.
From the bottom of my heart forever and ever, thank you.
It’s so so rare for me to even hear about another person with POTS, or to see it discussed this way with such frankness and realism. Thank you for sharing; reading this felt like making eye contact with someone familiar from across the street. I hope you can feel just a little seen too.
Heather Hogan, you are one of the soft butches of my heart, and there you will remain. There’s a lot of strength in the wisdom of these words, and in admitting vulnerability. Love to you and Stacy ❤️❤️❤️
Your writing is beautiful and captures the essence of a journey that turns lives upside down. Since the beginning of the pandemic I’ve been dreading the way of disability that will inevitably result, especially illnesses like POTS and CFS that so much of the medical community don’t know how to recognize or refuse to acknowledge the existence of.
I’ve been, to some extent, where you are. Being young and becoming disabled with something you can’t even explain is terrifying and life changing, especially the cognitive symptoms. It takes away everything that you are inside, and all your hopes and plans for the future. It leaves you without words to describe an experience that those around cannot possibly imagine. It turns your entire world upside down.
I was deeply touched by your story, both by your illness journey as well as your inner strength. I want to tell you that it does get better. The onset of disability comes with a terrible grief for everything you were and thought you might be. Let yourself feel that, let yourself be upset and furious and sad and frustrated with the world. It’s scary and it sucks. But something bigger and brighter comes later, a new way of seeing yourself and the world around you, a new way of loving every piece of who you are and accepting yourself as enough.
The most amazing things can be built out of the ashes: the bonds you form with the most incredible people living the most incredible lives, from a new way of looking at yourself. Stepping into the world of disabled perspectives and advocacy has completely changed my life and who I am.
Don’t feel bad about not knowing much about disabled culture! We have always been a minority, and very few of us knew anything about the disabled world until we were thrown in head first. There is no wrong way to do this. There is no one you have to be but yourself.
I live in chronic pain now, every day of my life. There are things I did before that I will never do again. And yet, as strange as it may seem, I wouldn’t change it. I am a better, kinder and wiser person and I know who I am to the core. I was deconstructed; I built myself up again. Disability is so often portrayed as the end of a life, but I think it is also the start of a new one. There is life and love and hope and joy in front of you, just as potent and indescribable as before.
I hope you get the support you need, from both your friends & family and others in the disabled community who can help you. Stacy sounds like a gem, and I hope you have a long happy life together. I apologize for leaving such a long comment but I want you to know that you are loved and supported, that there is wonderful hope and life ahead even through suffering, and that you are not alone.
All my love,
Alex.
Thanks for writing this. I hope your health improves.
K
Oh, Heather, this is so–I want to say beautiful, the writing is beautiful, and resonated a lot with me as someone also struggling with a new-onset-chronic illness that verges on the disabling–but it sucks, and I’m sorry you’re dealing with it, but very glad you are here to be dealing with it. Sending tons of love and support.
Sympathies.
I developed what’s basically POTS after 3 weeks in hospital for emergency surgery sent me into a nasty autonomic flare (it’s a pretty common comorbidity with my primary condition, Ehlers-Danlos syndrome) 8 years ago.
While I am retaining far more of my daily life than I might have done, I’ve still lost so much that some days it scares the hell out of me. I can honestly say I believe I know how you feel, to some extent – especially as pre-disability (which for me would be the fall and nervous breakdown I had almost together at 19), I used to cycle all over and hike for miles in the countryside. I miss it so much sometimes. I hope you get your conditioning back.
You are finding your way in uncharted territory like so many other disabled people have done, we know. We understand. You won’t hurt us, we are more durable than most people because of the things we have been through. You are welcomed, you are cherished, you will be okay. It might be different than you imagined, it might be frustrating and difficult, but over time you will find yourself again. We welcome you into our community and are happy to support you when you need it. You ARE strong, just strong in a different way than you thought you would be. And you’re still a soft butch!!! <3
I LOVE YOU.
🎩
I’ve been disabled by severe ME and POTS for 28 years since a severe viral onset in 1992 (POTS is common in ME or myalgic encephalomyelitis), have published four books somehow and was a Lambda finalist but totally fell off the edge of queer culture a decade ago as I went from almost totally bedbound to super bedbound. I really feel for you, Heather, appeciate your eloquent story, and wish you real recovery soon. I also hope the new collaborations between ME and Covid researchers will lead to quick treatments for all of us.
Heather, thank you so much for this and for your previous AS post about this and your twitter updates. I hit a full 19 weeks tomorrow today. You were the first person I saw talking about not getting better from covid and it was a relief to know that I wasn’t alone in it. It was from your tweets and retweeted articles that I learnt that there were more people in this situation and I can’t thank you enough for helping me feel less isolated in this terrifying illness with your sharing.
I’ve been fortunate that I’ve recovered enough to “just” have moderate fatigue that becomes severe if I overdo it, which is a constantly moving bar, and the symptoms that come with that like brain fog. I know I’ve got some funny brain fog stories like your Ministry of Magic one but I can’t remember what they are now. So much resonates with me in your writing (wording? It feels wrong but words are hard these days). I’m scared for my future too and whether I will get better or not. I don’t knoe if I can go back to work any time soon. I don’t know when I’ll be able to see the family that used to be a comfortable but now impossible driving distance. I don’t know if I’ll be able to visit my favourite places and feel the joy of long walks where I feel more at peace than anywhere else, of trusting my body to make it home again without collapsing.
I wish you all the best in your recovery and learning to live with your disability. I hope that you’ll be able to buy your own bananas and ride your bike again and do all the other things that you want to do and that the balance of hope and acceptance gets easier to find.
Thank you as always, Heather, for your beautiful writing.
If you haven’t already seen her work, Jessica Kellgren-Fozard is a British lesbian Youtuber with POTS and other disabilities, which she discusses often in her videos. I’ve found her work immensely comforting and entertaining.
Be well and take care.
I was going to make this recommendation myself! Jessica’s videos are wonderful, and have taught me so much about disability/chronic illness. She also does great profiles of queer and/or disabled historical figures that are fascinating. She deals with POTs, fatigue, and brain fog, among other symptoms, which in her case are related to genetic conditions.
Yesss!! I love Jessica!!! Her and her wife are so cute!
Thank you for writing this Heather. Thank you.
I’ve had very mild POTS for (probably) my whole life, and nine years ago it became serious enough that I started having significant problems and got diagnosed. My symptoms were probably about as severe as yours at the beginning, maybe not quite as bad. (Unfortunately, I barely remember the parts where I was REALLY sick, so it’s hard to be sure.) My doctors always told me that teenagers grew out of POTS in 3-5 years, which obviously didn’t happen for me. However, I do know some people who have grown out of POTS or who have had their symptoms get drastically better, to the point that all they need to do now is stay hydrated. I don’t know if this has happened to people who got POTS as adults, because that’s rarer, but it’s definitely a possibility.
My POTS has become vastly more manageable as I’ve figured out what works for me. It took probably three years to find exactly the right mix of medications to raise my BP, lower my HR, make me retain fluid, etc. (I don’t think my med regimen would be at all useful for you, since I don’t have the adrenaline issues you mention. That being said, I know the adrenaline POTS is a fairly common subtype, so there are definitely people out there dealing with the same thing.) I also had to make a lot of lifestyle changes–it’s annoying, but I basically have to try to be as boring and healthy and careful as possible. Now that I’ve got those things mostly figured out, I’m able to work part-time, spend time on my hobbies, keep my apartment relatively clean, cook for myself, etc.
Compression socks are definitely the way to go, and I recommend trying at least one pair of compression stockings (the pantyhose style, I love Juzo’s) because some POTSies get blood pooling higher up, including in the stomach. Also, watch for sugar content in your electrolyte drinks–my doctors told me to drink Gatorade, and I did that for about three years, constantly. My teeth are now riddled with fillings and I’ve just had a second root canal. I now use an electrolyte powder made by the same company that makes Emergen-C, which is sugar free. It unfortunately doesn’t contain sodium, but I try to make sure and get that from salty food. (POTS–the one heart condition where the doctor’s orders are to eat MORE salt!)
The good (?) news is that POTS is one of THE most common “rare” illnesses–about one in one hundred teenagers has it. (At least that’s the statistic I’ve heard.) As aforementioned, some do grow out of it, but still. Support groups and communities may skew young, but as more people get POTS as a result of COVID, I suspect there’ll be an influx of older POTSies. I am not on Tumblr anymore but I remember there being a great community there. I believe there are also Facebook groups. It sounds like you’ve already found a lot of great community, but I definitely recommend Tumblr in particular, as I learned a lot of really neat tips and tricks for POTS on there.
Dear, dear Heather! Thank you for writing this. Sending all my care and lots of strength for days when you need to borrow someone else’s!
❤️❤️❤️❤️❤️
I thanked you for sharing this on Twitter already, but I had to add it here too. I was in tears by the end of the reading. I’ve followed your battle from the beginning and it’s amazing how strong you are even when you are feeling so weak. Thank you so much for informing us about how terrible this virus can be, opening our eyes to a new reality that can sneak in anybody’s life and turn everything upside down. We needed that. A lot. Sending you all the positive/strong/healthy/loving vibes!
WoW! Thank you for sharing your story…sending love, light, and hopefully some laughter your direction…
This was so moving, Heather. Thank you for writing it. I’m so sorry for everything you’ve lost and how hard this illness has hit you. Of course nobody deserves something like this, but it’s wildly unfair of the universe to bestow such suffering on one of the kindest souls on the planet! I really hope things get a bit easier for you as time goes on. You’re still the tenderest butch around, and the cane only adds to your Anne Lister swagger.
I’m so sorry you got POTS. It sucks.
I knew this was going to happen after COVID- we’re going to see a huge wave of folks presenting with dysautonomia. I’m so sorry it happened to you.
Try Trioral- more bang for your buck than Liquid IV.
Dinet.org has a great forum where you can ask the weird questions that nobody knows the answer to, not even your doctor.
Try reading Toni Bernhard, “How to Be Ill.”
And yes, you are disabled. This is a severe and life-changing disability. This will break you down and you get to figure how to put yourself back together again. You will be a different person now and that’s ok. Thank you for sharing your story.
Of course I wouldn’t believe me myself 🙈 – but I can safely say to you, honest and convinced: you are so worthy!! like your neurosurgeon said, people like you for being you, as a person!
lots of strength, patience, love, joy, … to both of you.
All the hearts for you.
I am speechless except to say that you are so much more than enough ❤️
Started crying when your neurosurgeon showed that he cared about you … that’s how you know I have also experienced a lot of dismissive medical professionals in my life. 💜 Big love to you and Stacy as you continue on this journey. Thank you for sharing with us.
Hi Heather. I’m a Covid long hauler too. A soft butch turned into a mushy butch via Covid. I was diagnosed early March and knocked down hard by 3 waves of it thru May. Although I now test “negative” the landmines it has placed in my body have been devastating. I have permanent Lung damage (glass Lung), Heart palpitations that randomly stop my day or night and make me feel I’m surely going to die from an exploding Heart,Kidney damage and the hallucinations that come and go just for shits and giggles. I’m 101 days out. Sending you gratitude for telling the truth and solidarity from Northern New Mexico..Fig (that’s me) and Pumpkin (my feline companion who has walked me through).
Thank you for sharing all of this Heather! And all of your updates on twitter through all of this!
I was just talking to my therapist yesterday about how I’m having a hard time holding all of the grief, how the beginning of this (cant believe it’s week 19 already; my day 1 was 2 days after you) feels sooo far away but also I can remember those first nights very clearly. And I remember that day around 2 weeks where I also felt like I had survived and gotten through it and it was over. But relapsed the next day. I’ve been struggling myself with feeling like I never even had a chance to protect myself from all this, I caught it before any clear guidelines and protections had really been put in place. The loss of agency around everything, every day to day change, has been so hard. Your generous sharing of your experience has helped me feel seen and known in all these small ways that hardly anyone in my life can relate to because they (thankfully) havent had covid.
I’m so glad you have Stacy and doctors who listened to you and are holding you through this.
Thank you, thank you for this Heather. You will forever be my fav swagged out soft butch!!!
Thank you for sharing your story, Heather.
Thank you so much for sharing this journey with us, Heather. I have POTS too – I devleoped it after a serious illness during childhood. It took me five years of inexplicable fatigue and fainting, along with severe-but-unidentified tachycardia, to finally get my dianosis. It’s been nine years since then, and my autonomic nervous system continues jerk me around like a drunken game of tug o’ war, but in some ways it has gotten easier. I have assembled an army of physicians and large arsenal of defensive gear to help me cope when things get really bad, which is less often now that I have a solid symptom management plan. I imagine you will build something similar in the coming months – I hope you quickly find effective treatments and physicians you can depend on. You are not alone in this struggle! Sending all the good and healthy vibes your way.
Wow – what a story. Usually I love skimming articles for the “meat” but this article I read every word because it’s all so powerful. Thank you for sharing your story in you funny & real writing style. Sending my thoughts your way and oh yeah…you ARE still a soft butch.
I went through similar hell following a viral infection eight years ago. Panic attacks, POTS, massive fatigue. All doctors said it was “just anxiety” because the standard bloodwork was fine. Little by little my system repaired itself and the same will happen for you.
A friend of mine has POTS and found that “slow salt” tablets help with her symptoms with fewer side effects than the typical meds.
Sadly, system recovery isn’t the case for everyone. I was told I would probably grow out of my POTS because I was young when it developed but I’m well into my twenties and it’s still as rough as it was when I was a teenager – I just have a wider selection of treatments than I did back then.
Same, I got sick at age 15-ish and was told I would grow out of it in 3-5 years. I’m 24 and I definitely still have POTS. It’s a lot better managed now, and it may have also gotten a little milder on its own, but it’s still there.
Thank you for sharing your story, Heather! I love you so much!!
I got all the way to the end without crying. and then i got to “I thanked her for her time, hung up the banana-phone, and turned it into a microphone to interview our cat Socks about the rumors that he’s a marshmallow head.”
Heather, my heart is with you and Stacy right now and I feel so so so very many of these feelings.
Lots of love to you and the various cats
P.S. Were the rumors about Socks being a marshmallow head indeed true?
Thank you for sharing your experience.
Just want to say that swagger comes from the inside out. It takes more forms than the walk that gets all the press. It might take time, but you’ll find your new swagger forms.
Hello Heather! What you wrote here is really moving and I can’t even begin to understand how hard it must me for you. You’ve been a sort of companion to me for many years. I started reading your recaps in afterellen when i was 19 and thought I was straight. I’m 27 now and very aware of my queerness. Your writing has always resonated with me in a very meaningful way. You’ve made me laugh and cry in equal measure and I think you’re a big part in my coming to terms with my sexuality and realizing that yes, reading about queer people like I’m reading about myself doesn’t seem like something a lot of cis and heterosexual people do. You’ve been an ally and a friend even if you didn’t know it. The way you write about queerness and feelings and life and happiness and even sadness has left a deep imprint in me, and has showed me a path as regards the kind of writer I want to be. You seem to have fought quite a few battles before coming across this one. I’m not going to pretend I know what living with a disability is like, but I firmly believe the essence of who you are shone bright in what you wrote here. I wish nothing but the best things in the world for you. Whether you continue writing or not, thank you so, so much for everything.
For any other people with POTS:
I recommend TriOral Oral Rehydration Salts. It’s shocking how much cheaper they are than all the other options, especially bought in the 100 pack. It’s 100 liters for $40, and has loads more electrolytes per liter. Do check with your doctor before taking.
Note that my order got lost somewhere in the USPS system and took like 3 weeks to reach me when ordered from the manufacturer’s website, so order from Am*zon if you need it faster.
Also, here is a Google doc which compares the ingredients and prices of almost all the electrolyte solutions on the market:
https://docs.google.com/document/d/1WDDknYbm-ri7nY7lErqa577lmiMFjhmqUXAllrLwVyM/edit
And Heather, I will be back to read your piece when I have the emotional energy to cry <3
Heather, this is a wonderful piece. Welcome to the disability community. You are great and we are here rooting for you.
Heather. I woke up to this amazing piece of your heart and felt so much for you. I thank you for not doing this alone. For speaking out and sharing your story. For being so incredibly honest with us about what this means for you and your life.
I have had chronic illness’s for at least 11 years (Crohn’s and endometriosis). I was then diagnosed with POTS last year after coming to terms with the fact that something entirely new was happening to my body and causing me to be unable to walk or function at times. I haven’t truly begun my dive into the community of POTS, and your writing spoke to me in a way that I didn’t know I needed.
In the past, I have asked myself “Do I belong in the disabled community?” or “What if the disabled community doesn’t agree with me on x, y, z?” and it has taken so much therapy and amazing disabled leaders to help me see that WE ARE part of the disabled community! Therefor, any of our thoughts, opinions, and feelings are valuable and necessary. It’s taken me years to come to terms with this, and I truly can’t imagine what it must feel like to become disabled during and because of a pandemic. I just hope you feel the support of all your queer and disabled family. And thank you for sharing your voice <3
Wishing you peace and health
Hi Heather. I am not familiar with you (but I am so happy I am now), but one of my friends from college sent me this column and I had to send you a comment. She sent it to me because I had just posted on Facebook that my POTS has gotten so bad that I am taking a break from practicing law because I can no longer keep the pace. My POTS trauma was a blood clot 11 years ago. I was a healthy, happy, and busy attorney that poured myself into my work. My gynecologist wanted me to try a new birth control that had less estrogen, so I began taking Yaz which I actually liked. About a year or so later, I got a massive pain in my leg that wouldn’t go away but I just figured I had pulled a muscle or something. That happened on a Sunday and the very next Sunday a major pain started in my chest. The morning I was supposed to pick a jury for my next trial I ended up in an ER when I got winded walking 10 feet. I was diagnosed with a blood clot that broke off and went into both lungs.
I was immediately hospitalized and ended up staying out of work for an entire month. The best part was I spent that month with my uncle who I called Pops because he was like a father to me. I was usually too busy with work to spend more than a few hours a week with him. He passed away 2 months later from cancer. I could recognize the blessing of that event because I have such beautiful memories of my Pops.
That event also led to 5 more years of chest pains, trips to the ER, blood thinners, numerous doctor visits, and general frustration that I wasn’t the same. Finally, I felt like I was in a great grove in 2015 when I had changed offices and was really living my dream. I had recently turned 40 and knew that I felt comfortable in my skin and was very happy. I was not only a respected assistant public defender, I was traveling all over the country on average of once a month as I taught continuing legal education courses and served as a board member of a national criminal defense organization as well as on the Board of Directors of my undergrad college. Then I got to a point where I was nearly fainting every morning on my way to court. I kept having pains, shortness of breath, dizziness, crippling GI issues, and near fainting that led to several doctor and ER visits. I was in the middle of a first degree murder trial when my GI doctor sent me to the ER causing an interruption in my jury trial that tipped the scales for me. I was crying so hard on the phone that my father almost booked a flight for he and my mother to fly to Phoenix from Houston to check on me. He was able to calm me down and that night I was discharged from the ER. On my follow-up visit with my primary care physician, he told me that he suspected I had POTS. Thankfully, my position as a defense attorney employed by the county made it possible for me to go to the Mayo Clinic for all of my care. The definitive test was the tilt table which practically blinded me as all the blood rushed to my feet. The official diagnosis came less than a week later and I began a journey that has easily been one of the most difficult times in my life. The medication regimen I was given made me a different person as I was always in a fog, was at a loss for words, tired easily, and could barely function. I took FMLA to adjust, but a month turned into 7 weeks after a brief hospital admission and a horrible reaction to one of the meds made me gain 50 pounds (even though I couldn’t eat or hold anything on my stomach) and became suicidal. I returned to work only to be admitted to the hospital 3 weeks later. My office wouldn’t accommodate my disability so I was medically terminated. After a year, I accepted a position at the Federal Public Defender in Portland, OR and was optimistic that my new regimen would put me back on track. A month after I moved, I met the man that would become my husband and was getting adjusted to life with POTS.
I was not the same. I was better, but was frequently dizzy with brain fog. I had difficulty working 40 hours a week at the office as I was still pretty symptomatic. After a year, I was again medically discharged. My husband and I married 2 months later and I was unable to find any employment that would accommodate my disability. I got another blood clot in my lung, which meant another medication added as I am now on blood thinners for life. I tried working for an insurance company after becoming a licensed agent and then opened up my own little practice taking court appointments. At that point, I was happy again. I married the most incredible man that supports and treasures me and I was back to working in my field. A year later, I began to have a horrible flare-up which has left me incapacitated at times and my work began to slip a bit. The COVID scare just added to the stress and I made the difficult decision to apply for disability. I started the transition out of law practice and was able to find a job that is a temporary remote position with the State of Washington helping to adjudicate unemployment claims.
After 4 years, I am steadily learning how to adjust to a life with POTS. I have had numerous falls, have to run the air conditioning in the winter, get tired after a shower, don’t have the energy for sex, have been having constant pain, increased migraines, and just feel as if I just ran a marathon. I have been having a medication adjustment as my neurologist tries to figure the best treatment.
I apologize for such a long response, but I feel a kinship with you. I admit it has been a rough road, but there are some bright spots. It is difficult having an invisible chronic illness, especially when people stare the handicap placard in the car and assume you are faking. I am learning to lean on my husband. I am learning to accept my limitations. I am learning to be honest about how I feel. I am learning to admit that I am now disabled.
Thank you so much for sharing your experience. I will be thinking good thoughts for you as you begin to navigate a life with POTS. There are many of us and even though we don’t know each other, we are bonded in a sisterhood of sorts. Good luck to you and hang in there. Also, don’t feel bad when Hulu and Netflix become close friends. The bright side is there are some great options when looking to binge-watch.
Thank you Heather. Your writing is always a gift to us, your readers, and this piece feels even more generous than usual.
I thank you from the bottom of my nerdy, queer, tomboy femme heart. Blessings to you and to Stacey.
Sending you and Stacy and the cats lots and lots of love
Heather, thank you. I can’t imagine how much brain fog and exhaustion you battled to write this piece, to find all your words and make them go together in the right way. Or I can a little bit, but until I read this I’d forgotten the intense grief and shock that comes with trying to navigate a new body, and brain when it feels like it’s failing you, or maybe you’re failing it.
You are going to grieve. And it will be funeral like, because you’ve lost the person you knew you were, and the future you wanted and as queer women there’s so little that we can depend other than ourselves and our ability to fight our way into some form of safety and stability.
I just want you to know that you’re not alone, and I see you. There’s a whole disabled community out here and we will hold space for you. You don’t have to prove your disabledness to us. You are valid, and you are valuable. Your worth is not diminished. Kia Kaha
Also if you haven’t stumbled upon her yet, can I recommend that you check out Jessica Kelgrenn-Fozard on YouTube? She’s an amazing queer disabled advocate, and she speaks a lot in her videos about how her and her wife balance their relationship with her disabilities. I believe she also has POTS
I nearly cried when I saw your diagnosis. I have POTS too, not from Covid, but from a condition called Ehlers-Danlos. I know the drinking constantly and the salt intake and the meds and the exhaustion, and I am so so sorry.
Thank you for sharing this, Heather. I can’t imagine how difficult it was to write: emotionally, physically, and mentally. I’m sorry that you’re going through this, and it’s so generous to share it with people. I can see from the comments how many people it resonated with.
Book recs are how I communicate, so I wanted to say that you might be interested in checking out Care Work by Leah Lakshmi Piepszna-Samarasinha. She writes about queerness and disability and networks of care, and the messy emotional reality of it.
Oh Heather. My heart. Thank you for writing this. Your care for others shines so strong through this piece. I understand and am deeply moved by the difficult idea of a carer being now in a time where you’re the one who needs to be cared for…I don’t think I’m the only one who’d say you still absolutely drip with ultimate soft butch energy. Thank you for sharing this piece. I am deeply moved and sending my love.
Heather… thank you for a beautifully written description of what I suspect is more common than anybody knows. I cried, thinking I wanted to fix you, but then I realize I want to fix us.
Shaun Ricks, Visalia, Ca, Wk 22/Day 146.
I am sobbing. Thank you for this.
Thank you for sharing, Heather. I’m so sorry that you’re a test case; been there, done that, got the puzzled medical professionals. I was just (finally, after a decade plus of symptoms) diagnosed with EDS and various comorbid conditions, including mild POTS. It sucks royal donkey dick!
Also, if there are things in your life your body and brain won’t let you do, or that society as we built it makes it difficult for you to do, you’re disabled.(so long as you wish to claim the term) source: i’m disabled and i say so
Hi Heather! 🌈 My partner found this article and told me about it, and I’m so glad she did. I have POTS, as well as some other chronic illnesses, and coming to terms with my increasingly disabling disability has taken years. The grief is cyclical, so I try not to be surprised when I’m hit with mourning for the life I wanted, again, after months of acceptance in between.
I wanted to share this with you in the hopes that it may help. It took half my life to get diagnosed, but I have hyperandrenergic POTS. My norepinephrine and epinephrine skyrocket when I stand, over exert myself, don’t eat or stay on top of electrolytes, etc. I found a specialist, and he put me on fludrocortisone, and it *changed my life*. I‘ve been able to go back to school, and I even walk without my cane sometimes now. It triggers the vessels in your legs to constrict, keeping more blood volume in the upper part of your body, thus decreasing the adrenaline dumps.
As others noted above, we WELCOME you as disabled, queer family, and we are here for you in solidarity and support. Sending all my gay love from New Orleans. 💕💕💕
Your story breaks my heart, reminds me that each of our efforts to mitigate the spread are worth it, and gives me so much hope as well: for you and for all of us. Sending all the love and care to you and Stacy and Socks & any other cat bbs you might have lying around 😻
Heather, I’m so sorry you have to go through this. It sucks, and no one deserves something like this. I used to read your PLL recaps on a certain other website that shall not be named back when I was an allegedly straight teenager, and it was my first real exposure to lesbian/queer culture. I’ll always be grateful for that. Thank you so much for continuing to write for the queer community. Sending all my love.
Heather, I have followed (and loved) your writing on the internet for more than a decade now and I love you just about as much as a person can love a stranger online that they’ve never really talked to. I know I don’t actually know you, but your writing has made me laugh and cry and feel so many wonderful, cathartic feelings over the years, and the fact that you are out there living your life and doing your thing is one of those random facts that makes me feel just a little bit better about this crazy, shitty world.
I am so glad that you were finally able to find a doctor that trusted you, respected you, takes you seriously, and helped find a diagnosis. That is momentous, and also the very least of what you deserve.
I feel a bit silly bringing in a She-Ra quote here, but I’m gonna do it anyway because I don’t think I can really say it better in my own words: “You’re worth more than what you can give to other people. You deserve love, too.” Keep on hanging on, and taking it one day or even just one minute at a time, and I hope you know that you are loved and appreciated no matter what – even by random strangers like me on the internet.
<3
Thank you for sharing Heather! Sending lots of love and support your way!
Read this after getting up this morning and cried. Thank you so much for sharing this, Heather. Sending hugs and love. :)
Thank you! I feel as though I am living this (articulated far less well) in slow motion. I was diagnosed with MS over 10 years ago (I was young for it). I am a former college athlete and now begin to limp after a few miles of walking (which does not mention the host of other symptoms). I do not know how to redefine myself and my role in the world (and relationship with my partner). You piece resulted in me nodding at the screen half happy to find kinship with someone and half helplessly sad at the fact that it was my future. Yes, the specifics might differ, but the overarching themes will hold. Thank you for your honesty.
Thank you for sharing your experience. Thank you so much. I’m glad you’ve been diagnosed properly. Finally. I’m glad your as okay as you are. I’m glad you’re writing about it because I love your writing.
Also: That compression sock style game is the definition of soft butch swagger. Swagger forever
Agreed!
You are still over achieving! That was a brilliant article and you taught me something I (a registered nurse and life-long nerd) HAD NEVER HEARD OF! Thank you taking the energy and time to educate people about something very important. I’m grateful to you.
Which part had you never heard? This comment makes me a bit nervous – what with having had a 20-year battle to have my hEDS recognised and developing dysautonomia on top of it at 25! ;P
Hi Heather,
I just wanted to reach out to you as a long time dysautonomia warrior to say it can and does get better. That’s not to say that you will wake up one day and this will be gone but as you adapt you will find your new normal.
We are a lot alike, overachievers who are used to doing it all and being there for others but it’s super hard to let others do for us but you will find you will find other ways to be there for them.
It took me almost 5 years to get there and I’ll admit the whole isolation with covid has cause a few setbacks but I’m in law school, working and living a pretty full life ( including online dungeons and dragons lol)
I am so sorry you’re going through this. I live in Dallas and had it in April. Just now finally have an appointment with a cardiologist. Your symptoms are worse than mine but I just shouted, “OHHHHHH!” about the ice scarf in the kitchen…Thank you for that tip!
You should check out Jessica Kellgren-Fozard on Youtube. She has POTS, along with a few other very complicated ‘invisible illnesses’ that she talks about in a wonderfully informative and entertaining way. She’s a lesbian as well – so she does talk about community and how her disabilities play into being a member of that community.
I too have invisible disabilities. For most of my adult life I’ve been misdiagnosed, and frequently; often it took decades to learn what was truly the problem.
Only one example: after more then five years of going to dozens of different physicians about my chronic pain, a rheumatologist diagnosed fibromyalgia, which eventually was slightly adjusted to myofascial pain syndrome. (The differences are minimal.)
Only in the last two months—after surgery on my larynx, and in advance of radiation therapy to attempt to treat the remaining malignancy (I was a heavy smoker for 35 years; quit only a year ago)—did my ENT specialist (of all people!) diagnose servere cervicothoracic kyphosis.
It’s been difficult to locate material on this condition written for the layman; most Google matches are extremely heavy on jargon understandable only to thoracic surgeons, and which are available to be read only if one has the professional credentials to access sites with articles from academic journals. Usually one needs to be a medical professional or academic currently employed by a hospital, clinic or university. Occasionally, such materials are available to anyone: but those lacking the usual degrees or occupation are required to pay double- or triple-digit fees for access. To a single article on the Internet. Often merely in HTML format (occasionally PDF). Often it’s more than the $100-to-$200 one could expect to pay for the sort of textbooks on specialized technical subjects typically published by a university press.
From what little I’ve been allowed to read, it’s a malformation of the spine. There are many possible causes; my doctor (and his physician’s assistant) believe mine is likely to have been congenital. The most-obvious symptom: it’s difficult (and painful) for me to attempt to raise my head. Children—who tend to be forthright, direct and tactless—will ask, “Why do you always look at the ground?” The poor posture and the pain grow worse as one gets older. Ultimately, many patients will eventually have a “chin on chest” posture: unable to look at other people when speaking with them, or to raise a glass and drink from it.
Despite the staff at the radiation oncology department at a local teaching hospital—who are performing my radiation treatments, daily, over a six-week period—being aware of this condition, and how painful it is for me to be forced to lie flat? It’s the only way they’ve ever been taught to perform these procedures. So every day I must lie still and attempt not to scream (or otherwise make the staff feel uncomfortable or worse, by demonstrating—even unintentionally—how much excruciating pain I’m experiencing) as I’m pushed onto a table for my radiation treatments. They’re not careful or gentle. But unlike the strong, four-person team of nurses who tied me down to the table for my surgery? They don’t work with intense speed and urgency, and (so far) haven’t left bruises and scars. I’ve repeatedly written emails to the doctor about my concerns: most importantly, my feeling uncertain whether I’ll be capable—physically and emotionally—of continuing the treatment sessions for the full scheduled period. Every day my emotional and mental impairment grows more severe; the pain is at its worst during the sessions I’m forced to lie motionless in a position unnatural and painful for my body: but it never stops, and is progressively getting worse…all the time.
Of course, I’m aware that if I were unable to continue, I might eventually succumb to cancer, experiencing pain which could be worse than what’s already taking place. Also that everyone I know—upon learning I’ve been unable to tolerate the full schedule of intended appointments at with the radiation oncologists’ team—would be likely to interpret this a a “refusal” of absolutely-necessary medical treatment akin to suicide.
It took more than two weeks for a doctor to speak with me for more than two minutes. He would only say that it might be possible at some point in the future for my pain medication (I’ve been taking methadone for chronic pain for about 12 years) to be temporarily increased. But only if my primary care physician approves it. He works for a different hospital owned by a different large medical conglomerate. Throughout my progress first to ENT specialists and eventually to oncology, it’s become increasingly difficult to get the staff or the doctors to share information with each other. Even though they seem to be using the same software, the institutions are radically different in their bureaucratic and medical procedures and standards.
Moreover, it’s been a regular feature of my attempts to communicate with the teaching hospital’s staff that they talk about what might be possible but only as a hypothetical. The number of things they’ve either promised to do—or implied would be done, in order to improve my experience, particularly since I was reluctant to agree to treatment with radiation in the first place—yet continued to discuss only in theoretical terms, never taking even tentative actions in that direction? It’s happened with tremendous regularity. Enormous numbers of medical professionals are involved. The one person in charge—who has the authority to make decisions—has almost zero time available to talk with patients. When after finally speaking with him—for less than five minutes—my condition had already deteriorated to the point that my ability to speak, and to remember the things I wanted to talk about—has been severely diminished. And consistent with the aforementioned pattern, the doctor discussed many possible options but seemed disinclined to take action on any of them.
I just wanted to say thank you for writing this and also a sad but also loving and in-solidarity welcome to the invisible disability club! I’m not gonna say it’s all great but I am gonna say you are super not alone <3
Hello there! Thank you very much for writing your story. I’m a health technology researcher, so being able to hear people’s stories and reflections on their health journeys is always illuminating for me. From your story I can see your incredible strength of spirit and ability to adapt to anything that life throws your way. It also sounds like you’ve been able to have tough but important conversations with your family and friends and work toward your goals bit by bit. I strongly hope that you will get back to DnD-ing and enjoying battling monsters and enjoying RP with your friends <3. Also, your compression socks are super cute!
this made me sob with my whole body. thank you so much for sharing your story, heather. i wish you and yours strength and grace and peace.
Thanks so much for sharing your story. I’ve been disabled to some degree or another since childhood and might now be looking at more medical shenanigans in the near future (bone marrow is still studying for upcoming blood tests). One of the most valuable things I’ve learned about handling acquired disability is that it’s just as important to mourn what you’ve lost as it is to grow into the strength you’ll discover as you incorporate it into your daily life. Vulnerability is part of the human experience, just as resiliency is. Keep fighting and learning. I wish you luck!
I relate so much to your experiences, even though my disability and diseases are not results of COVID-19. Invisible illness is painful, terrifying, and hard to explain. And like you, I’m a fixer – I fixed everyone and everything and left nothing for myself, until a terrible neurological illness pushed me down and out.
I’ve spent four years evaluating (and sadly, losing/dropping) friendships, altering goals and dreams. I’ve learned to not go out, or not expose myself to certain triggers, etc.
It is hard and will continue to be hard. But it sounds like you are loved and have good medical doctors on your side. I will keep you in my thoughts.
No one knows what tomorrow will bring for you. But you WILL be here tomorrow, so you still have time to make progress. You can also learn new coping skills and pastimes. You’ll be okay, but you may change a lot as you adapt and progress.
Give yourself permission.
Heather, Thank you for writing this vulnerable piece. A disabling health conditioning happening to you once you’ve already established who you are can be really hard. The secret, from my experience, is inviting in the grief and also surround yourself with people who love you. You have made such a wonderful contribution to the world and the lives of queer folx through your writing, as I think the reaction to this piece shows. Best wishes on your journey to a new understanding of yourself and the world, and of empowerment.
Heather, this is such a powerful story; thank you for having the courage to share it. I’ve had a more mild form of POTS for five years now, and I completely relate to your anxiety about not being able to work hard and be there for the people you love. I hope you find that they just want to be there for you, and that there are so many other people going through something similar, but who feel that they’re all alone. Sending good thoughts to you and everyone else struggling <3
Heather, Thank you for sharing your story and struggles with the after affects of COVID-19 and POTS. Your butch cred remains intact even as you reassess your identity as disabled be it temporary or permanent. Over a lifetime many of us will become disabled temporarily or permanently; how we cope and learn strategies personally and as a society to scaffold and move forward in strength is what build community.
Shout out to Stacy for caregiving and support; it is a blessing to have someone caring and capable in your life. She needs breaks too so I hope she is taking time for herself to recharge.
🖤🤎💜❤️🧡💛💚💙💗🤍
Thank you for sharing this. I LOVE your writing. Wishing you a full recovery.
Thank you for sharing your journey with us, Heather
Wishing you the best 💙💙💙
Beautifully written. I have had POTS for nearly 10 years and know what a struggle it can be. Invisible illnesses are tough, but there are so many of us out there. You’re not alone.
It can be very scary in the beginning, not knowing what’s “normal” and what to expect. There are a bunch of Facebook POTS support groups if you ever need information or support. I’m an admin in a few. Feel free to reach out.
THANK YOU FOR THIS!!!!
-anna, brooklyn, 127 days
Heather, I have been reading your Autostraddle work for years and consider your 2016ish article on Fox News the definitive explanation of how it messes with people’s minds. I refer to it when I teach middle schoolers about propaganda.
I don’t know you personally at all. But you have touched lots of people with your writing, and I want to send lots of light your way.
Heather, thank you so much for writing this. It’s so vulnerable to share experiences of illness, unwellness and disability — and I appreciate it particularly as someone who also experiences illness and disability.
Oh Heather Hogan, You were one of the young queer voices in the Glee era who helped me come out as a 40something woman. All I can say is you are enough, today & every day. Sending all the love, light & prayers.
Hi Heather,
Wow! Thanks so much for writing this! My 21year old daughter has Dysautonomia, although her symptoms started without a major illness beforehand. Your experience of trying to get a diagnosis, and how your symptoms affected you really hits home with us. This is a daunting condition, to say the least, but I did want to let you know that after more than a year of being almost invalid, my daughter is making incredible progress! With the right medications, and some life style changes, she is very close to her old self, which we find amazing.
Thanks again for “shining a light” on this invisible illness! Best wishes for good health.
Last week, after years of non-diagnosis and mis-diagnosis, my teenage daughter went to a cardiology specialist who told her she has dysautonomia. I told a friend about it last night and she pointed me to your article (which upon reading I realized I’ve also read and enjoyed some of your pop-culture writing in the past as well.)
For my kid, just having potential answers instead of “maybe you’re just anxious” was a big deal. All of your symptoms sound very familiar to us, and while I’m sorry you have to deal with this (it sucks!) it was somehow comforting to see someone else talking about it, since we’d never even heard of it until just recently. Thanks for sharing this!
I cried at the end of this.
Not just because you are a wonderful writer and you always make me feel feelings.
Not just because I am sad you are going through this.
But because I think you just helped me figure out WTF was wrong with me for about a year or so. Diagnosed with anxiety, but had several weird, near-fainting spells. Weird dull feeling in chest that didn’t feel right, usually after standing up quickly and walking. Went to hospital, nothing abnormal in tests, no one could figure it out.
Doc put me on an SSRI and I actually DO feel better, but…that wasn’t the whole of it. There was something wrong and no one ever figured it out.
And all of this, all of these symptoms…oh I know them so well. On a much less pronounced level, but definitely all of them.
Not only are you telling your story, but you are telling other people’s stories, sometimes when they don’t even realize that’s the story they needed to hear.
Thank you, and don’t be afraid to ask for help. You’re worth it. And soft butch swagger is a mindset, not a physical thing. You got it, bb. From one butch to another. ;)
Hang in there. You have the best support, not just from your wonderful wife, but from all of us who care about you, even when we have never met you.
Heather, I am genuinely glad you have answers. You have the tools now to deal, and you’ve got the community with you. The world is better with you.
Be safe, be well.
Heather, your writing is so beautiful and fun and, at times, sad, when you touch on your despair and many days of unknowing. I hope it’s some solace to you that your craft has not suffered. I have hope for you and your tender spirit, and the odds favor you, and even if they didn’t I’d say you’re going to overcome anyway. Many thanks for sharing your story so I can better know how to care for my loved ones who may become ill. And your partner is correct – strawberry-rhubarb is the superior pie.
Excellent writing,Heather. Since I teach creative writing, I can’t help but put this comment up-front. Strong narrative voice.
One reason that made this good comes from the story. The way you put down on paper did the rest.
I watched my wife go through what was surely COVID, but there were NO tests in late February. It put her in the hospital. Or, should I say that I put her in the hospital, calling an ambulance at 3 am when I woke up and heard her gasping for air. She said her lungs were jumping in her chest with every breath. Oxygen levels low enough to kill her organs. Took 3 days to wean her off oxygen. No intubation, and for that we are grateful.
It took her 3 months to feel somewhat normal. I listen to her today while she complains about a sore shoulder and a bicep that will not heal, and after reading your post, wonder about COVID’s hold on a person’s longterm health.
I wish you all the best. Thankfully, you have a loving woman by your side.
Thank you so much for writing this. I wish you all the best as you adjust to living with POTS. I’ve had POTS and ME/CFS for 15 years, and it is possible to find some stability, purpose and pleasure while living with illness. It’s a dance to figure out what works for you, but someday (I hope) you will dance again, even if just for 30 seconds. Sending you warm wishes and healing vibes.
In the second paragraph I thought, “Wow, that’s a really specific list of symptoms. Sure sounds familiar.” Then I broke down halfway through when the cardiologist said “POTS.” With POTS, isn’t the medical “treatment” (disbelief) almost worse than the illness?
And “Am I disabled?” That bit, I know.
So sorry you weren’t believed. Sorry no one took it seriously enough. Love your support socks!
I’m really heartened reading all of these comments from others living with POTS. I sincerely hope that with time you’ll find a way to manage your condition and do better and better. It’s amazing how much you continue to contribute to the website, given what you’re going through. Reading this article, I felt a new and visceral understanding of covid and it’s effects, which is testament to your writing abilities, which are quite inspiring.
Also, I always know when I see a heather hogan review that I’m going to find a new show that I’ll connect with, as our tastes always seem to align. ;) so thank you for helping me to connect with so much queer representation on screen. All the best to you and your partner and all those on your support team, including those on your LongCovid group. May we find cures soon!
Heather, I’ve never read anything you’ve written before. I’m “old” (63), straight, and live in a small town north of Denver. About the only thing I have in common with you is a struggle with disability. I’m so moved and impressed with what you’ve written here. My heart goes out to you in your struggle with POTS and Long Covid. My hope for you is that you beat both and fully recover. But either way, don’t forget that you still have the most important things that make you great. You may be tired and not have words, but your love, insight, courage and humor are still there. You have many great gifts to share. You’ll find a way to overcome. Take it a day at a time.
While I have fibromyalgia and it was triggered by a bad case of influenza long before COVID, so much of what you writes articulates the struggle I’ve had coming to accept my limitations. I wish you the best and hope your symptoms abate and allow you to get back to what you want to be doing.
Ugly crying. Thankyou for writing this. My heart thanks you, my soul thanks you. My dtr has Disautonomia/POTS she is in hospital this week trying a new med and trying to get stabalized. (And i forgot to take her bananas yesterday as sometimes its all she can meep down)You wrote this so very well❤
I hope your body heals in time. But, if not, I pray at least your humor remains intact.
Your strength is motivating.
❤️ Heather this was fantastic.
I have Chronic Fatigue syndrome and this sounds exactly the same
Please seek out the people with lived experience because the doctors are going to give you faulty advice that WILL make you worse (keep going, exercise etc)
Look up pacing and spoons
Be kind to yourself
you are amazing
you are enough
From one POTsie to another, I’m so happy you got a diagnosis! It’s the first step to learning how to live life again. You’ve got this!
Heather I love you so fucking much.
When you asked: “Is a soft butch a soft butch if she can barely hold even herself together? Is a soft butch a soft butch without her swagger?”
as a disabled butch, I’m going to go ahead and say yes, yes you are. And I, of course, don’t have the answers to everything but, I think it’s safe to say: you are loved always, whatever happens. All of who you are, any and everything that makes you, you, is loveable and loved. Thank you.
Hi Heather, we’ve never met but you took care of my best friend last summer when she had a medical emergency at camp. I can’t thank you enough for what you did for her. I’m so sorry that you’re having to deal with this terrible sickness and its debilitating effects. Since you are so used to the role of caregiver and TCB badass, it must be so hard to be the one who needs help, needs to be cared for. I think about all the love and caring you’ve put out into the world, and how much is coming back to you now. I hope you continue to recover and the science catches up with the virus to figure out the best way to get you what you need. And even at a distance, I know you will continue to put out at LEAST as much awesomeness as you take in — that’s just the kind of person you are!
Heather, I’m so sorry it’s taken me so long to get around to reading this. Thank you for writing. Thank you for once again being so honest and vulnerable. I hope this doesn’t sound condescending, but I’m so proud of you for how you’ve dealt with this latest setback. I don’t know many people who could have dealt with this experience with the same amount of grace and humour and optimism. I hope you continue to feel better, to understand your disability. Know that this community is with you 100%.
Hi there, I have had POTS for 12 years and started out much the same as you after giving birth to my first son. Hardest thing I’ve been through, but I am doing a lot better, but it has been a huge journey to get where I am today! If I can be of any help or if you’d just like some encouragement, please feel free to email me. I can point you in the right direction and will be praying for you, LisaXx
Heather, at 42 my body started to give out due to spine issues. I look normal. I have been on the full arc of recovery for almost 10 years now after being a super human over achiever my whole life.
I’ve lived every moment of this piece your wrote for that decade. That’s how come I can say thanks for writing in a way that shows the tip of your iceberg.
so I know from where I speak when I say to you, t’s going to be fine. Being a badass will look different now. But make no mistake. Being a badass stops for no illness.
Invisible disability breaks down what is tough and gristly in us and makes us softer, it reimagines what tenderness looks and feels like, and it makes us that much more accessible and aware of the battles in our fellow human beings on sight. And when we forget, it reminds us again.
It smooths the rough edges and reshapes us in our own image of resilience and patience and carves rivers of time through our psyche.
Pain is inevitable. Suffering is optional.
Learn to meditate. I am more serious that you can imagine.
It was the gift that being bedbound for long periods gave me. It gave me space beyond mind, not in a woo woo way. In a real way much like D&D, except it’s a quest you take alone to the threshold of fear, and your meditative mind is your armor, sword, and potion that nothing can weaken because it thrives under duress.
I recommend the life work of Pema Chodron. Much love.
Thank you. I’ve had an invisible autoimmune disorder for decades, which absolutely informs part of who I am, but I also refuse for it to. I feel so close to you right now. My gratitude is for your absolutely skillful writing, and your even more skillful honesty. I don’t have anything clever to add to this. Thank you.
Heather
You are so brave and yes, still a soft butch. Stay strong and ask for help when you need it. Your readers, friends, and family will be there to support you.
I just read this and I’m hella proud of you.
Of how you use your voice.
Of how you share your feelings.
Just. Damn.
Thank you.
Thank you for sharing your story Heather.
Thank you for your words and sharing such a personal pain. I have been sick since January and going tomorrow for my 62nd Dr appointment for yet another cardiac stress test. I can’t list everything that’s been eliminated or the litany of tests including ones with nuclear injections. My Dr hasn’t admitted yet that it’s long term Covid. I had a fever for 105 days, went away, then came back. My pulse oxy has dropped into the high 80’s. Like you, the concensus is my heart and lungs are fine. In fact I was a marathon runner and triathlete before a cough on a flight to Europe then South Africa in January turned into my longest marathon yet. My wife misses her husband, my kids miss their dad, and the special needs kid Liam I raced with misses racing with me. I haven’t lost my job…yet, but I worry about it. Tomorrow, I’ll ask about POTS. Follow my (hoping for) progress at SeekingBostonMarathon.com
Thank you so so much for writing this, Heather. I’ve spoken to you very briefly on Body Politic, but I caught Covid around the same time as you – same situation, unable to get tested, but it’s presumed very likely it was Covid.
To this day I am still debilitated, have also developed POTS and very likely (though not completely confirmed) Crohn’s Disease. Today I am feeling particularly emotional, hopeless and fearful about the toll this virus has taken on my body. Reading this made me burst into tears. Everything you’ve expressed about the emotional effects of this, the thoughts running through your mind, resonate so deeply. Thank you again.
Heather, you are hands down one of my favourite writers on this website. I had no idea the health issues you’ve faced since COVID hit. Thank you so much for sharing your experiences.
As someone who works in a major public hospital in Melbourne, Australia, I’ve been highly cognisant of the risks of contracting the virus. Even heard stories about the long term after effects with some people. As we have the virus fairly under control here, it’s often felt like something happening far away, that it doesn’t really affect me or my life as much apart from having to don PPE every day at work.
I am so grateful to you for sharing your story. It’s reminded me that this virus is still raging across the globe, that it has major health repercussions for some, and we all have to keep taking care of each other by reducing the spread.
P.S. Thanks to you guys for voting that douche out. You know the one. The world gave a massive collective sigh when that happened.
this was a heartbreaking, moving, very informative piece. thanks for the vulnerability it took to share it
This was so deep and encouraging. Thank you for the share.
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I’ve had POTS for over a decade now, it’s weird to say those words, almost half my life and it absolutely sucks but you keep on keeping on. It’s nice to hear other peoples stories, i wouldn’t wish this disorder on anyone but I do hope with all the long covid people we start to get better research and treatment. Also compression socks are nice but core compression is the best because it brings you pressure up the most of any compression garment.
I feel so seen by this article as a (former?) soft butch with POTS. Nowhere near as bad as you had it but I really appreciate reading this and knowing I’m not alone.
Just want to tell you a thousand times that this is beautiful and to thank you for writing it
thank you for sharing this three years ago and again now. I’m so glad you were able to get back on your bike <3
This hit me deeply. As someone who frequently relates to you, Heather (to a scary degree at times), this struck me to my core. What you’ve experienced sounds like my worst nightmare, and yet, you seem to be handling it with candor, determination, courage, optimism, and aplomb (alongside a lot of grief and frustration, I am sure). This piece forced me to reexamine my own relationship to disability, “usefulness,” and personhood, because it is so much easier to see clearly and compassionately when looking at someone else. I hope this came off sounding complimentary and not offensive, because I 100% mean it as the former, but sometimes words are hard and this is a tricky subject. Lots of love!