HAJI MOHAMED DAWJEE: Long-COVID’s new life impact
Yesterday I woke up feeling like a new person. I took a preemptive painkiller to avoid getting sore eyes and a headache because I knew it was going to be a day of long screen time and I was determined to get stuff done.
I’m currently producing the second season of the podcast Don’t Shoot the Messenger and funnily enough, the first episode is about long-COVID. We spoke to health experts and epidemiologists who made a few startling statements about the virus and how it has started to attack different cells in the body when at first it was thought to just be lung disease.
Because no one anticipated this, there is very little research out there, but here’s the sour cherry on the top of the cake – it’s not unlikely that long-COVID sufferers may have to live with long-term chronic illnesses that develop from the virus.
When the virus first emerged, there were two scenarios – get hospitalised and survive, or die. Now there’s a third – don’t necessarily get hospitalised, but prepare for a really, really long-term effect on your body which is unpredictable and attacks at random times, ranging from malaise, fatigue, migraines, painful eyes, blurred vision, rashes and even urinary tract problems – oh, also bone illnesses, like flare-ups of arthritis, and which could leave you limping for life and cause permanent disabilities.
A quick Google search will reveal a frightening number of first-person stories about people who have suffered the long-term consequences of long-COVID after having it for three months or more. Epidemiologists themselves have started to write and document their variety of symptoms as a result of living with the extended virus. In fact, one health expert told us that one of her friends was now confined to a wheelchair as a side-effect of COVID and having had it for so long.
About an hour into editing the podcast and becoming very, very afraid about what my own future holds since I am approaching the 60-day mark, a bout of new symptoms decided to attack my body, halting the work zone I was in and ultimately my immense happiness that I was able to work so freely and energetically and feel so inspired. My hands became numb with pins and needles, as anticipated, my eyes failed and the headache set in and for the rest of the day I experienced a hip problem. By the time 9pm rolled around, I had a limp. Today, it’s gone. The pain is slightly lingering, but in my opinion not worth a painkiller or anything like that.
Before starting to write this column I sat down with a cup of coffee and planned my day with hope, I structured all my deadlines around my admin because I love a list and I love getting stuff done – of course my first symptom revealed itself when, after taking a sip of coffee I had right next to me, I stood up and went to make coffee – forgetting that I literally just had a sip because I already had coffee. I don’t love not knowing whether I will be able to accomplish only one thing on the list, a few, all, or none? What I don’t love is not knowing how to not “over do it” when I feel well enough to do things, because at night my body physically feels like a truck ran over it and the next day is going to be particularly difficult.
A few formal studies are starting to fall into place to try and study the lingering damage COVID-19 may cause – without this, there is no real way of understanding the disease at all.
An Italian study found that many patients who thought they had recovered at home from mild symptoms had developed heart abnormalities after two or three months – in fact, the percentage of patients is 78%. That is a significant number for a group of people who had no co-morbidities and a few, mild of the official symptoms listed by the Centers for Disease Control and Prevention (CDC).
The emotional debris of all of this, however, is that until the CDC recognises long-COVID as an actual medical diagnosis and has a definition for it, those who don’t have it are unlikely to take those who have it seriously – creating a great deal of stigma. But scientifically discovering treatments and definitions seems like a long way down the line. As one of our sources said yesterday, it took 15 years to develop anti-retrovirals that could help treat HIV patients – COVID-19’s cure is looking to be not as simple as a vaccine.
The CDC’s website still has no information on the evolution of this disease, the long-COVID phenomenon and there is barely any information on the long list of over 60 symptoms, including neurological problems which could have long-term effects.
The only people who know more than the doctors, scientists and CDC are those who live with it, who find support on forums and who gather round virtual tables to discuss research projects that can be taken on by themselves if they’re qualified epidemiologists, doctors and scientists who have been affected themselves.
I know it sounds trivial, but right now all I want to know is will I ever play tennis again? Or be able to exercise, or take my child for a walk without becoming breathless and wanting to pass out? Is everything going to be so difficult forever and is the reality that it may take 15 years before I have that answer the same way it did with HIV?
Haji Mohamed Dawjee is a South African columnist, disruptor of the peace and the author of 'Sorry, Not Sorry: Experiences of a brown woman in a white South Africa'. Follow her on Twitter.