I think it’s likely I got a mild Covid-19 case in late March. I was exhausted with some fever and digestive symptoms and I know where it probably originated from. I was lucky that I had a friend who could go to the pharmacy for me, and that even when several of my close friends left Sweden, I still had plenty of people I could call on for support if I was in trouble. Before and since, many people have written eloquently about the myriad ways Covid-19 can impact disabled people, about the pain of discovering reasonable accommodations disabled people have been asking for for years materialise in weeks when more people need them and about the importance of inclusive, non-discriminatory healthcare responses.
But one aspect feels like it’s taken a while to make it into the spotlight: recovery from covid-19 and how even mild case symptoms may linger for quite some time. Even at first glance, this seems important, seeing as younger people who are not immuno-compromised have been receiving the message that mild cases tend to work themselves out in a couple of weeks. Forbes contributor Bruce Y. Lee, with a simile I won’t attempt to rival, explains that Covid-19 symptoms “can hop around in type and severity, sort of like a really indecisive kangaroo that happens to be on Tinder for the first time”.
I’ve been experiencing some of that indecisive kangaroo feeling on and off (mostly off) over the past six weeks, though after a couple of walks on the weekend, it poked its head up markedly enough on Monday to make me google Covid-19, long recovery and chronic fatigue links. While responses to the virus vary dramatically, it’s clear that a significant number of people are finding various symptoms to reappear in waves, even in mild cases, well beyond the WHO estimate of a two-week recovery.
The lengthy, unpredictable recovery is sobering, especially for people who started off with another health condition which can make the process particularly challenging. But reading this Business Insider piece spotlighted a different, and wholly preventable concern: people who’ve had or probably had Covid-19 not being listened to when they explain that it’s still impacting their life, for instance their capacity to go back to work. One example: “Caroline said she recently told a partner at her firm that she might be slow to respond to email because of her illness. He suggested she might just be run-down from a couple years of working long hours.”
For my part, when I’ve explained to my thesis supervisor that my capacity for writing was below its usual on many days, she didn’t question or judge at all, and immediately assured me that everyone would be flexible. I appreciate this, naturally, but I shouldn’t have to feel lucky about that being the case, because that kind of empathy is indicative of how we should always be treating each other.
For now, the dismissal of lived experience of illness and disability is all too familiar. Here are three examples I’ve encountered in the last week alone. In her memoir, Carly Findlay, who lives with the skin condition Ichthyosis, writes about the regular barrage of strangers who present her with all kinds of unhelpful advice on supposed cures (there isn’t one) to presumptions about the nature of the condition as cosmetic/external only (it’s definitely not). Deafblind woman Haben Girma, in her book, writes about the time in middle-school when she plucked up the courage to ask her teacher after class about the homework assignments she couldn’t hear, only to receive a question about why she wasn’t wearing hearing aids (they don’t work for her but that was none of his business). A horrific number of people who are likely to have endometriosis, such as Rebekah, or any other difficult-to-pinpoint condition that relies heavily on reports of lived experience, find their pain ignored or downplayed by doctors.
The bottom line? People with an illness, disability or other health condition know their experiences, what works for them and what won’t, far better than strangers, hapless teachers or colleagues, and often even doctors. If Covid-19lands up leaving a lot of people with Post-Viral Fatigue Syndrome, I hope we will all be paying attention to what such people have been saying since time immemorial: please listen to us, believe us and think carefully before offering advice, however well-intentioned. � � Y� ���H��
A Frame on Life 