Once, while downtown with my young children, I noticed a man walking by with a pin that said “invisible disability”.
“Gad, how awkward”, I thought. He’s obviously not that disabled, as he’s walking around, downtown. And as we carried on our way, I continued to wonder what on earth his supposed invisible disability was, and why he felt the need to declare it on his jacket. Could he have partial blindness, and the pin is supposed to warn people he may bump into them? Could he be deaf, and we should help him in case of audio-only emergencies like an air-raid siren? Maybe he just has cognitive decline or a mental health problem. Likely that. Yeah. A mental health problem that causes attention-seeking and makes him feel sorry for himself because he just can’t deal.
I found a clean-looking bench and sat my kids down to consume our sandwiches. Gluten-free bread in those days was a novelty, but necessary for my son, so our sandwiches were rather hard and crumbly. I’d made up for the tasteless bread with super-tasty salami and tomatoes. No mayonnaise because my son was also allergic to eggs. Maybe the pin-guy just had food allergies and felt sorry for himself, but why would he advertise it?
I was a young mother at the time, still flailing to just understand my own kid’s food allergies, and pretty entitled. I worked my butt off with parenting, teaching, and running community programs. I prided myself on working hard, and I couldn’t imagine anybody more tired than me; more in-pain from lifting children; more deserving of accommodations or understanding. I certainly couldn’t imagine that one day I’d have an invisible disability.
Now that my kids are grown and I live with a serious invisible disability, I still don’t want to advertise it. Because shame. That pin-wearing guy was much more courageous than I am. I mean to challenge my shame with this photo:
Here I am in my usual morning location, writing this article. This photo was taken by my partner and caregiver, Markus, because I asked him to. The weird black thing on my face is an acupressure clip for migraines. I tidied the nightstand for the photo. Now I’m out of breath from doing so.
In early 2020 I was a parent, a visual artist, a self-determined learning consultant, and a leader of art and wilderness programs. I also grew many of our family’s veggies, in a garden I loved. I spent a lot of time hiking, crawling and climbing around in the wilderness with kids. Then I, my daughter and most of her class that I’d been teaching, came down with a sickness that nobody could identify, because although our symptoms matched those of the then-new Covid-19, there wasn’t yet any test available to confirm it. After a week of fever, some blacking-out and a visit to urgent care, then a few weeks of ongoing respiratory symptoms, we recovered and went back to work and school.
By March, I was exhausted. My body hurt everywhere, and I developed a new, ongoing respiratory issue; I felt like I couldn’t get enough air, and was given asthma inhalers of two different types, that made the symptoms much worse. I had a headache all day every day, but I told myself I can handle pain, and kept working. After a day of work I’d be wheezing and shaking in the evening; sometimes also with a fever. I cut back my work days to only two per week. Then one. Then one every two weeks. And by summer I was flat-out in bed, most of every day. I eventually learned that the name for one of my major symptoms is postural orthostatic tachycardia syndrome, or POTS. It’s basically a circulation and autonomic nervous system issue, and means that if I’m upright for too long, I get blurred vision, dizziness, nausea, and will eventually pass out. I spent the latter half of 2020 and all of 2021 mainly in bed.
I had Long Covid. I still do, but those first two years were the worst. I couldn’t get out of bed for more than about five or ten minutes at a time, maybe three times a day, without suffering intense shooting pain, wheezing, dizziness, blurred vision, and fever. My partner helped me to dress and undress. He washed me, and administered the many trial-medications and supplements I was offered. He worked gratefully from home and took frequent breaks to bring me food or tea, to keep up with errands, and sometimes to feed me or help me to the toilet. On the occasions I did leave the house, my son would walk behind me and push gently up on my back to help me walk. My daughter, also suffering from Long Covid, but less severely, would curl up beside me in bed, where we spent endless hours just keeping each other company. My kids took over most of the cooking, garden and chicken duties. I find it difficult to talk about the extent of my physical disability in those years, partly because my symptoms were dismissed and mocked by so many physicians, at the time, but also probably because I carried around a huge ableist attitude. And because my disability was invisible.
The most obvious invisibility was that I was in bed. No longer able to attend community functions or even just go to the store and bump into neighbours, I was no longer part of my community. This experience forced me to realize something I’d never believed, before: Most people don’t really miss you, when you’re gone.
But as the years went by, and more and more was learned about Long Covid, my health did improve. I benefited greatly from the BC Women’s Hospital’s Complex Chronic Diseases Program, and a series of interventions that slowly brought me to the point where I am, today: I can spend hours of every day out of bed, mainly in the afternoon, and therefore can go out in public once in a while. Despite POTS, arthritis and other inflammatory pain, I can do at least a couple of “big activities” each month, such as watching a show, attending a family gathering, or grocery shopping. Sometimes one per week, if I rest thoroughly for the week in-between, to recover from the resulting fever, viral flare-ups, nerve, organ and joint inflammation. If I don’t rest, or if I am unfortunate enough to pick up “a slight cold”, as it’s known to others, I can end up with months of shaking, untreatable fever, passing out from lack of oxygen and/or pain, pneumonia, bronchial, sinus, and urinary infections, or pleurisy. I’m now allergic to at least one antibiotic, because of this, and have cataracts from prednisone. So I’m very, very careful about masking in public, sticking to my treatment regimens, and how much I go out. I’m not as careful as I should be around staying home, because it’s lonely, here!
This, too, is a kind of invisibility. When I’m out in public, people see me and tell me I look so healthy! I say “yes! I’m doing really well!” and then return to my house, where I curl up on the couch, my partner wraps me in a blanket, and I wait for the fever to subside.
Once in a while I mention my reality to people. In a sentence or so I try to describe my symptoms—an effort, I guess, to break the invisibility shield; create some kind of connection. But while some people are curious; compassionate, even, many sort of drift away, or roll their eyes. Sometimes they offer advice: I’m suffering because I (they assume) am an anti-vaxxer, or otherwise because I foolishly got vaccinated. I should try going paleo, or vegan, or eating only meat, or only blueberries. More reasonably, I should see a therapist, or a doctor, or maybe get some exercise. I get it. I really do. All they can see of me is that I’ve put on weight and am not out working in the community. They don’t know that I’ve seen over a dozen specialists, tried even more interventions, and that as much as it physically pains me to put on weight from lack of exercise, exercise itself makes me put on weight by causing inflammation and more hours lying in bed.
I am SO aware that this sounds like a pity party. If you’re still reading, I commend your patience and tolerance. I’m still here because, as I healed, I discovered there are in fact millions of (by one estimate 400 million) people living with Long Covid, and fighting for others’ visibility is worth confronting my own shame. In 2024 I created a wearable art piece and performance called (dis)robe: Hospital Gown, that included the faces and common symptoms of over three hundred Long Covid patients. The intent was to advocate and create visibility for this massive group of people, but I also learned a lot, in the process.
I learned that most of us are women. I learned that while some had pre-existing health issues, many were very active, healthy people. Long Covid doesn’t seem to discriminate, and may not, in fact, be a result of laziness or incompetence. The list of symptoms is very long, but many are common to most of us. All of us have been discriminated against, either for mask-wearing, sitting down to rest, using mobility aids, or for being anti-vaxxers (most of us aren’t). I’ve learned that very few have actually been helped. The number of people who were or are still dismissed by medical professionals is alarming. The number of medical professionals who still treat us with disdain is sickening.
A few days after my second Covid vaccine in 2021, my partner brought me in to the ER, as I was wheezing, blacking out from either lack of oxygen or the excruciating pain in my chest, shaking, squirming uncontrollably, and running a moderate fever. My partner pulled our car up to the doors of the ER, but I couldn’t get myself out. He ran inside and luckily found friends who were there with their elderly father, and they helped me in to the waiting room. The place was packed; there were no beds, and everyone was stressed. Because I couldn’t see, was wheezing loudly, and was in too much pain to speak clearly or state pertinent facts, my partner tried to describe the situation to the intake coordinator. She barked at him that I could speak for myself, and told me to stop hyperventilating and get my act together. My partner tried to steady me in the chairs as we waited beside an unused stretcher, until he couldn’t manage it anymore, and just put me on the stretcher, without anybody’s permission. The ER doctor came by every few hours, offering me opiates for the pain, which I’m allergic to, and every time I declined she rolled her eyes and left in exasperation. Eventually she told me to get a thermometer and go home. Nobody even looked at my lungs, and thankfully, I did eventually recover.
In 2025 I lost a friend to pneumonia. She was a mother, like me, to a teenaged child. She wasn’t formally diagnosed with Long Covid, because our system hasn’t yet managed to find, diagnose, or treat all those who are suffering. She thought she had Long Covid, and as someone who knew her well, and saw the similarities in our symptoms and the way she was dismissed by medical professionals, I don’t doubt she did. Her official cause of death was pneumonia, though. It will not be recorded as Long Covid, and nobody cares, even so. Well… I do. Juanita is one of the people for whom I’m writing this. She was extremely courageous. Lots of people, including me, were put off by how forward she was; how open and honest about her life’s challenges. People like to ask you how you’re doing, and hear back “great, thanks! How about you?” They don’t actually want to know. My father told me this when I was a teenager and I thought he was just obnoxious. Now I know he was right.
My father had Parkinson’s. It was, eventually, a very visible disability. Although unfortunately, before he used a walker, people sometimes just saw his wobbliness and assumed he was a drunk. When people asked him how he was doing, he often said, “better than I could be!” It was a way of seeing the positive in what was actually an extremely challenging, progressive disease. He also liked to say his cup was so full it was overflowing.
I guess I’m following my Dad’s lead on this. When people ask me how I’m doing, I might answer that my chicks are growing adorably, or I’m sure loving this weather, or maybe that I’m so happy my kids are living well in the city. Sometimes I take my Dad’s lead and say something that hopefully points at the ongoing challenge of my disability while sounding positive about it.
Disability.
That’s still hard to write. Even though I have a disability parking tag in my car. My car that mainly my partner drives, because driving taxes my system too much. I lie there with the passenger seat reclined and my feet up, heating my body with the seat heater, trying to conserve energy and circulation for whatever we’re driving to. I haven’t applied for all the disability benefits I am supposedly entitled to because the process is too much work, and (mainly) because I’m ashamed. Internalized ableism. Gad, how awkward.
I long for the life I once loved: leading adventures through the bush, running art programs and tromping out as an installation and performance artist, making change in the world, for the better. But I hold my adorable chicks; I make an excursion from my bed to the sunshine. And I remind myself that I have an invisible disability, and I’m better than I could be.