Title says 'what's it like to get sick and never get better' there is an angry bear with a thermometer stuck out it's mouth saying, 'well this sucks'
What is it like to get sick and never get better

COVID-19 has ripped through our lives and turned everything upside down but there’s something else going on that until now hadn’t been brought to the public’s attention, and that’s the idea that you can get sick and never get better. 

You might have started to see it in the news or online, ‘post viral fatigue’ seems to be cropping up everywhere but what does it really mean and why is it linked to chronic illness? 

Post viral fatigue is more commonly linked to M.E. / CFS. Although we aren’t 100% sure why it happens, in a lot of M.E. / CFS cases the patient will become sick with a virus, mostly Epstein Barr (more commonly known as mumps, mono or glandular fever) and after the infection has gone away they are left with the debilitating fatigue and other symptoms. 

Why we are now seeing this mentioned in conjunction with COVID-19 is that there are a number of patients, dubbed long haulers, that seem to be having the same issues as M.E. / CFS patients.

Now you would think that these patients would also be dismissed like those with M.E. / CFS have. It’s not like we haven’t known that viral infections can lead to this for a long time but the difference here is the sheer volume of people all affected all at the same time. 

We know that M.E. / CFS occurs in roughly 12% of patients who contract Epstein Barr. If the number of COVID patients follows the same pattern our community is about to grow a whole lot bigger. What’s most heartening though is how governments are being forced to accept on a global scale that this is a medical emergency. There are already studies being done on long haulers and as a result this should lead to greater understanding of what is happening with post viral fatigue and hopefully lead to better treatment options. 

It certainly doesn’t erase the medical mistreatment so many with chronic fatigue symptoms have suffered but it gives me a lot of hope that people are finally have to take stock and listen. This pandemic has forced a global shift in the way that we view sickness and that’s something we will discuss more in the section below. 

Now we’ve talked about one of the ways that people become chronically ill, I wanted to take a more in depth look at why we aren’t talking about the fact that you can get sick and never get better and what harm that’s causing us. 

Prior to the Corona outbreak, medicine had a very set way of dealing with people who had contracted a virus and then never recovered. Our medical system is set up to deal with acute illness, the kind where you see a symptom, treat it and the patient eventually gets better. However with chronic illnesses there is a never ending cycle of symptoms, and once you relive one, another takes it’s place. 

Unfortunately, because medicine only focuses on acute illness, and doesn’t train medical practitioners how to deal with cases that aren’t, both doctor and patient become frustrated with the situation. The patient because often they feel dismissed and like they aren’t given enough time to discuss symptoms and the doctor because the patient keeps coming back even though there is nothing else that the doctor can think to suggest. 

But there is a wider effect that isn’t just the doctor patient relationship and it’s based on the way we talk about sickness and view medicine as a whole. We are trained to see doctors as the only reliable source when it comes to sickness and because we are only teaching them about acute illness that’s all we understand as a society too. 

So when a patient isn’t getting better, it isn’t just doctors that become frustrated but family, friends and work too. We don’t talk about the idea that you can get sick and the doctors can’t do anything, despite knowing that 1/3 suffer from a long term chronic illness! 

But Corona is changing this. Suddenly on wide, global scale we are seeing the impact of long term health issues. We are seeing where there are gaps in modern medicine and that doctors and scientists don’t have all the answers. We are starting to understand how important funding is and how precious good health really can be. 

This isn’t going to change overnight, and we all know how much public understanding can backslide. But what’s important is it’s finally being spoken about, which is the first step to better understanding.  

                          Books:

  • Pain and prejudice by Gabrielle Jackson
  • Invisible Women by Caroline Criado Perez
  • The Health Gap by Michael Marmot 

                            Links:

  • More info on Epstein Barr Virus can be found here