In the last couple of days, in light of so much thought and discussion about illness, I have been reflecting on the period of time when I first became ill with chronic fatigue syndrome. And I can’t get rid of the lingering feeling that, in the next few years, as corona virus continues to spread like wildfire, and the focus is very much on infection and death rates, there will be a huge, and largely silent epidemic of people who simply don’t get better, but instead develop post-viral fatigue or chronic fatigue syndrome.
Historically, after large viral epidemics, a significant proportion of those infected by the virus do not recover fully, so this feeling is not unfounded. Which means that, over the next few months, many people will have to go through a period of realisation that they are no longer healthy. With this in mind, I hoped that, by sharing my own experiences, I might be able to help people who are struggling with the same or similar issues that I did.
For many people, in the initial stages of a chronic illness such as CFS/ME, there is a period where you do not realise that you are sick, and instead blame it on anything other than a possible illness. For many of us, who were previously healthy, such an invisible illness creeps up on you without you realising there is actually something there. In my case, I carried on for about six months, getting increasingly angrier and more upset at my fitness levels, and blaming it on stress, overwork – anything but the actual cause. It was my mum, having friends with chronic fatigue syndrome, who suggested that may be the reason why I felt constantly rubbish. At that point, I was suddenly able to put the last six months into perspective.
This period of time was very emotionally intense for me as I was confused about why my body was failing me, and angry at the impact this had on my life. Some very clear instances stand out to me when I think back at that time. On one occasion, I had gone on a 30-kilometre bike ride with a couple of friends. We were all very sporty and often exercised together. At the end of the ride, I was completely exhausted and had nothing left in the tank, already a little unusual, but we still needed to cycle up a huge hill to the supermarket. I just couldn’t; so, they ended up going without me and I cycled back to the camp site feeling so betrayed by my body. I felt like I was lazy, unable to push myself and really unfit. I blamed myself for partying too much, drinking too much and not going to the gym often enough. In reality, I wasn’t partying very often anymore, because most of the time I was too exhausted for that anyway. So, it just didn’t add up in my head. I really hated myself at that time.
A month or so later, I was in Den Haag with my partner. He was in a wheelchair having broken his hip and I was responsible for pushing him. We needed to get on a tram and I had to lift the wheelchair up three very steep steps into a busy tram (yay for accessible transport?!) and I couldn’t. Again, there was nothing left in the tank. I just about managed and then sat, shaking and trying not to cry from pure exhaustion. Bearing in mind I used to weight lift as part of my training, a wheelchair is not that heavy, and I shouldn’t have suffered so much. Once more I was exhausted, confused and upset about feeling this way. I hated my body.
There are hundreds more of these experiences stored in my memory. What I mostly remember is confusion and exhaustion. I dragged myself through all these activities, thinking I should be doing them, and when I could no longer manage, I became upset. I blamed it on stress and thought that it would go away, but it didn’t. I blamed it on my university course being way too intense (which it was), yet during the summer break I continued to get sicker. I blamed it on anything other than my body, and instead of listening to what my body was telling me, I kept on pushing and pushing myself to try and feel normal again, and get my fitness back. When I felt ill and sick, when I had constant headaches, high fevers and hallucinations, instead of making time to go to the doctors, I forced myself to go to class instead. I told myself that I didn’t have time and I just needed to work harder and stop being lazy. Well, now I know how totally foolish that was. But that is skipping ahead!
Why am I writing about this now? Having seen the way people are encouraged to treat themselves when they are sick, I want people to learn from my experience. Living under neoliberal capitalism means that our worth is measured by our productivity, and our character is defined by how hard we try. Illness lowers our productivity and our success rates, so we need to push through it and keep our noses to the grindstone, to feel like we are achieving and successful. Illness, and succumbing to illness is failure. This is heavily programmed into society very early on: for instance, all the way through school, people who did not miss a single day of school, were given monetary prizes at the end of the year – literally! Congratulations on not getting sick, or on getting sick and bringing it to school. Congratulations on not having cancer, nor cystic fibrosis, nor needing kidney dialysis – nor having ME/CFS, nor anything else that might already have impacted negatively on your childhood! We are encouraged to push, push, push – and never to listen to our bodies. And this, we are led to believe, will be rewarded. So, this is what I did, thereby speeding up the inevitable decline of my sick body.
Symptoms of illness literally come as little messages from our body that something is not right (in a fairly healthy body): for instance, we feel pain to show us where something is wrong. If we ignore a symptom, it will worsen until either our body heals it, or we do something to help our body to fight it. So really, when we become sick and feel worse for the wear, instead of pushing ourselves through, we need to take time to slow down and understand where our symptom is coming from and address it. It is easy to feel that illness ‘doesn’t happen’ to us, because we are fit and healthy, but unfortunately it happens to everyone, sooner or later.
So, whilst this pandemic spreads through the world, if you do get sick, even if you suffer only a light dose of coronavirus, take your time, and don’t rush back into living your life at full speed – pushing yourself before your body is ready. You have the perfect opportunity, for once, to sit back and allow yourself to heal thoroughly – given that many of your normal activities are already cancelled for you – and self-isolation is a totally acceptable practice!
Of course, this is in no way suggesting that those with CFS/ME are to blame, because they did not stop and listen to their bodies when they initially became sick. CFS/ME will still happen, even if you do everything right. But there is a considerable body of evidence to suggest that pushing yourself too hard, particularly when you have had a virus, or already have CFS/ME can exacerbate a decline.
So, do yourself a favour. Listen to your body and treat it with care and respect. And if you are continuously feeling exhausted, instead of getting angry at yourself, remember that sickness is in no way your fault. Give yourself time to heal. Make peace with yourself and your body. And remember, just because you are unwell, your value as a human being remains the same.
