“You’ll be fine, it’s just a virus”: Why Long Covid Cannot Be Treated the Way ME/CFS Has Been

For a Dutch version, click here.

This piece has been very hard to write, but I know – feel – that I have to share it with you.

When I was 14 and my viral infection turned into a long-term illness, I received zero support from medical professionals.

By zero I don’t use hyperbole. It was literally zero.

I saw different specialists. Not one of them helped me. Few, perhaps even none, believed me. Because ME/CFS (click here for more info on the condition) does not have a discernible biological cause. For now. And so while so many struggle with similar symptoms, we still go mostly untreated. To this day to have ME/CFS is to be met with scepticism in the medical world. And by extension, in society.

Even now, this remains a real and heartbreaking situation, because not much has changed. So to see the way Long Covid is currently treated has been a major trigger over the past several months, taking me back to a time when I needed help and guidance the most, but received none. And so this new – yet old – condition comes at me and people like me like a double edged sword.

(Note: For clarity reasons I will use Long Covid and ME/CFS separately, even though I believe they are in many cases one and the same condition considering their viral origins and corresponding symptoms. Yet because Coronavirus is causing a surge in new ME patients I wanted to distinguish them in this piece from those who have lived with it since before the pandemic. But know I consider them as often one and the same condition!)

Any current media attention is very welcome and the way people with ongoing symptoms after contracting COVID-19 are taken seriously by them is quite a change from how I, and my fellow ME sufferers, are often treated still.

There is a discrepancy there however that I admit is at times hurtful, but hopefully it means change for us is also on the horizon, as long as we acknowledge they are in many cases the same condition – as Dr Fauci has confirmed – and don’t start separating the two as different entities.

Though, what has been the hardest to see is a continuous scepticism in society and the medical world when it comes to symptoms that are hard to explain and don’t seem to go away with the treatments we know and use for ailments where fatigue and post-exertion malaise are the main symptoms.

“You had Covid months ago. Exercise more and you’ll feel better.”

“Your Covid symptoms should be long gone. It must be all in your head.”

“Your bloodwork is fine. You’re healthy. You can go back to work. I’m sure with a routine your symptoms will then disappear.”

Spoiler alert: it is not helpful to question people’s experiences and this type of advice will only have a detrimental effect, no matter how well-meant. I know, because these types of “helpful” statements that I have heard for the past twenty years are the same many Long Covid patients are reporting to have heard from doctors, employers and friends today.

To think that in my twenty years of living with these debilitating symptoms nothing has changed in the way the world approaches such situations is utterly heartbreaking – and infuriating. We need to do better. Medical professionals need to do better and as a society we need to as well.

Illness is never one size fits all. While you may just experience a cold, your father might be in bed all week with severe illness, yet your mum may be without any symptoms, all from the same virus. Our immune systems and bodies are all different. They all respond differently. It is why I never recovered from a viral infection while my sister did from the same one.

Illness is personal. Illness varies. Illness manifests differently in everyone. I think it is hard for us all to acknowledge this. We want one pill to fix one illness. One vaccine to prevent and cure another. If it doesn’t turn out this way, we turn our backs on those who still suffer. We cannot deal with a reality wherein modern medicine is incapable of at least understanding and tracing symptoms.

And so we as a society have very far to go in believing those who are sick and experience symptoms without a direct biological cause and start taking individual experiences seriously. Instead of putting them on a harmful exercise regiment, we need to listen to those who have and got more sick. Instead of pushing someone to go back to work, we need to start believing someone when they say they can’t. Because trust me when I say: no one wants to sit at home and do nothing – I think if the past year has taught us anything it is that this is true.

Those of us having to live that life for the rest of our lives deserve as much respect as those who can go about their day without pain and fatigue after contracting the same virus.

So, believe the person with the symptoms. Support them. Help them, in any way you can. There is nothing worse for a human than have your experience, your truth put into question, disbelieved, even mocked. It will only lead to worsening health, physical and mental; never improved health.

To feel seen is to be connected to another. Support and being believed is all any one of us craves. It’s so simple, yet practically so difficult to come by.

Let’s change that, so that new generations of ME sufferers receive a much more humane treatment than I ever did. We need to seize this opportunity for this large group of people who are only just coming to grips with their new reality. We as a society have an obligation to help them. Now is the time to show up and empathise with and help those who will suffer longterm from this pandemic. Because ME is a tough illness to live with and patients deserve all the help and support we can give them, from those of us who have lived with it for so many years to the loved ones and doctors around them.

We may not yet be able to cure ME, but the time is now to show a humane treatment to its sufferers.

Because trust me, to be writing this twenty years after first getting sick is not what I expected. In fact, it is very difficult to acknowledge even to myself that so little has changed. And so for all those millions who are now becoming ill, please believe us when we talk about our experience of being – and staying – ill and be a part of helping us be seen. It would mean so much.

Thank you.

x Sandra

P.S. Do you struggle with Long Covid or ME/CFS and need someone to talk to? You can always drop me a line below, on Twitter or via E-mail. You are not alone!