Naming The Beast

A four and a half year wait for a diagnosis finally ends

What can you do in four and a half years? Quite a lot, I would surmise. It’s more than one Olympic cycle, nearly half a decade. There’s a big difference between a five-year-old and a half-year-old. Dreams can be had, acted on, and reflected on; relationships founded or broken; it’s more than enough time for a government to fall.

Just before Christmas 2020, I tested positive for COVID-19. My family and I had to be extra careful in the COVID years because I was immunocompromised due to medication that was essential for controlling the pain associated with Ankylosing Spondylitis, which I have lived with for over twenty years. I was double vaccinated. But all that wasn’t enough; however careful you are, you can’t physically stop someone who knows they are ill with Covid coming to a church service at the church I led, and being in conversation with me. We had all the right screening procedures, we met outside (much to the chagrin of some people); we wore masks; we sanitised. But still, someone who had the disease came to church anyway, and that’s how I got it.

My experience of Covid wasn’t too bad, all things considered. I was never in any danger; I rested and let it wash over me. But it lingered. Lingered some more. Four and a half years later, it’s still lingering in the form of extreme fatigue that doesn’t go away after sleep, headaches, chest pains, breathlessness, brain fog, and other things besides. Eventually, I ran out of sick leave and had to finish at the church I was leading. Some people didn’t believe I was sick; some thought I was exaggerating, complaining. Doctors said there was nothing that could be done. I knew I had what’s referred to as Long Covid, even if it was difficult to get anyone to officially name it as such. My GP was sympathetic, but she said that there was nothing to be done.

https://nmhec.org/long-covid/

After a couple of years, I started to hear of a doctor in nearby Stellenbosch who was developing a test for Long Covid based on detecting microclots in the blood, and subsequent treatment. In time, a friend of ours with worse symptoms than mine went to him for treatment; in time, he saw significant improvement. But I couldn’t go there because we couldn’t afford the test. So I was stuck; we were stuck

Over time, things have changed. As I alluded to elsewhere, our financial situation has changed. We were now able to afford the test. So on Monday last week, I went for the blood test. The test results confirmed that I ‘officially’ had Long Covid, and rated the severity of my condition as ‘high’. I now have an appointment with the doctor in the diary to explore treatment options. There’s no guarantee of success, of course, but at least there’s a path ahead to be explored.

Between having the blood taken and receiving the test results, I was nervous. I was nervous that the test might come back negative. If that happened, I would have to doubt myself afresh; were the doubters right? Was I gaslighting myself? What, exactly, was going on? So I was relieved to see the positive result; relieved to finally be able to name it, to be able to have something to point to by way of proof, and to have the hope of some possible treatment laid out ahead of me.

It’s exhausting not being believed; whether that’s by others, or at times by yourself. The mental weight of feeling you have to justify every modicum of rest, not being able to work in any normal definition of the word. The feeling like a burden, even when those I love do nothing to make me feel that way. The sense of not being able to contribute to household life, and social occasions missed out on; friendships dying for lack of time spent; enforced isolation eating away at you. These are slow deaths, almost imperceptible from day to day, undeniable when taking the long view. Yes, this fatigue-laden condition is tiring in other ways too.

Physically, nothing has changed since I received the blood test results. I’m still ill in the way I was before the needle pricked my arm. I’m still fatigued, prone to brain fog and chest pains and breathlessness and unrestful sleep. But something else has changed: a new sense of confidence, a nascent hope, and a knowing smirk of vindication. I was right. Others were wrong. I almost certainly won’t receive any apologies, but the black and white statement, the stark affirmation of it all, carries a modicum of healing in its own way. I shouldn’t have to need this sort of vindication, but we’re in an age of extreme scepticism. Scepticism that can corrode relationships, eat away at respect, and cause relational fissures to widen and deepen. So here we are. I was right. I am seen and heard. It will make little difference to most, but I will know what I know, and that can not now be changed. And for that at least, I am thankful.