Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a mysterious illness to many people. They’ve either never heard of it or heard misinformation about it. That means when you tell somebody new about your illness, you have to explain a lot. Something I’ve never really got the hang of. I either explain too much or too little; they tune out, or they get too sad.
I would love it for people to have a basic idea of what the illness is. That way, I don’t have to keep coming up with entertaining metaphors to explain it to them. So, here are five things I wish you knew about ME/CFS this ME Awareness Month. Five basic things that, if more people understood them, I would have to spend a whole lot less time explaining!
1. ME/CFS Starts From an Infection
The other day, I met someone at an event, and she found out I had an illness. Her first question was, “What was your big childhood trauma that caused the illness?” I had to reply something along the lines of, “My childhood was actually great, so no big traumas there!” All the while, thinking, “Do you ask everyone their biggest trauma on your first meeting?” But besides being a really annoying conversation, it speaks to a broader belief that many people have. The idea that ME/CFS (and other chronic illnesses) come as a response to intense lived trauma. And while trauma obviously has an impact on illness, there is usually a very clear start to ME/CFS, an infection.
ME/CFS can start from many different illnesses, but to name a few: Epstein-Barr (glandular fever), herpes, COVID, dengue, polio, etc. Through the years and different viral epidemics, there has always been a wave of post-viral illness. As the epidemic goes on, this turns into ME/CFS. Hence, I often describe ME as “Long COVID before it got hip.” After all, I am the original hipster.
While they do not know the exact reason why this happens, there are a few well-respected theories. One idea is that the virus stays in your body and keeps reactivating. Another theory is that during the infection, fundamental changes happen to your body. We have not yet figured out how to reverse these changes.
2. ME/CFS is a Dynamic Disability
One thing that confuses people about ME/CFS is how much the condition changes over time. Some days it affects me much more than others. For example, three days ago I spent a day at the beach, playing in the sea, and even doing a little slacklining. The last two days I’ve spent mostly in my bed. The thing is, those days are far less visible to other people. It makes sense that they might not understand why, on Friday, I seemed fine, but for the next few days, I was so ill.
This also goes for longer periods of time. At the moment, I am fairly healthy (for me). That means that, while I always have to think about pacing and my health, I can do something on most days. I can hold down a part-time job and even do things outside of that. On the other hand, I have had times in my life where I have been predominantly lying down and stuck at home, too sick to leave bed, listen to music or read.
The impact of ME/CFS varies so much that it impacts so many things. For instance, friendships and relationships need to be able to adapt to my energy and health levels. It would make a huge difference if people understood that I will only know my energy levels on the day, and to understand that this is something I only have some control over, it would feel like I would not have to justify and clarify so much when I say that I cannot do something.
3. Pushing Through ME/CFS Symptoms Will Make You Permanently Sicker
“Just push through, you can do it, just try harder” is something many people with ME/CFS have heard on repeat. There is this common idea that working through illness and pushing on is heroic and is the only way not to let it get to you. Unfortunately, with ME/CFS, this makes you exponentially sicker, sometimes permanently. Many people do not understand this and think you are using the illness as an excuse and just don’t want to push through the pain.
Post-Exertional Malaise
This response to overexertion is a hallmark of ME/CFS and is called “post-exertional malaise”. It does not happen in other energy-limiting or fatigue-related conditions. The problem is that overexertion when you have ME/CFS causes systemic damage and measurable physiological abnormalities, including impaired cellular energy production, immune system perturbations, autonomic nervous system dysfunction and damage to the mitochondria. This can result in a significantly lower packet of energy and a lower energy baseline.
I have so many examples in my life to illustrate this because, as quite an excitable person, I have found it very hard to pace myself and avoid overexertion. But notable examples include a couple of years ago, when I went on a short hike to a waterfall in Sweden, which was definitely not as short as it should’ve been, and then went directly to the Edinburgh Fringe festival.
I had far too much fun and ignored the red flags that I was doing too much, did not take the rest I needed and in general was far too flippant with my body. The next six months were spent housebound and predominantly in bed. I crossed the threshold from mild/moderate ME/CFS to moderate ME/CFS.
It’s as easy as drinking too much tequila in one night or trying to learn to do the splits (that’s just stretching, right?), which might both be things I’ve done that have lowered my energy baseline.
4. ME/CFS Can Kill You
The scary thing is that, while I’ve been very lucky and never had severe ME/CFS (which is compared to living with end-stage cancer or AIDS), one false move, an accidental infection, or not taking the illness seriously enough, can cause you to get severe ME/CFS or even die.
Many people do not even know that ME/CFS can be fatal. I did not know for several years. It is something we don’t really talk about all that much within or outside of the community. But actually, ME/CFS can be fatal. Being part of the online Instagram community of people with ME/CFS has been eye-opening, because people do die. People I’ve had a connection with. From an illness we pretend is not fatal.
It is only recently that doctors have started listing ME/CFS as the cause of death on death certificates. That is because usually it comes from secondary issues, such as your body being too exhausted to digest food and water, and sepsis from PICC lines. However, the reason the body went into shutdown mode in the beginning is exhaustion from ME/CFS.
This is something that most people with ME/CFS have looming over their shoulders. I am terrified of getting severe ME/CFS or dying from it. I am so aware of how fragile and easy it is for my body to get into that state through no fault of my own; by catching COVID, by some sort of accident, by getting carried away drinking and dancing. Once you have severe ME/CFS, it can be very hard to get out of it, because even performing the most basic bodily functions can be too much.
5. There Are Currently No Treatment Options
Currently, ME/CFS does not have any specific treatment options. So when people ask if I have spent a lot of time at the doctors’ or hospital, the answer is, not really. I mean, probably more time than my fair share, but what have I gotten from that? A diagnosis, a pair of compression stockings and a lot of medical gaslighting!
Most people with ME/CFS have tried a cocktail of different things from all over the shop. People tend to be treated symptomatically, so migraines, which are a symptom of ME/CFS, will be treated separately. POTS and tachycardia will be treated separately. And while symptoms may then be managed, there is no overall treatment of the condition and definitely no cures.
A lot of people turn to off-label use of medicine, such as low-dose naltrexone, or an array of vitamins and supplements. Others turn to alternative medical practices. But we have all tried a million things, sunk money into things that do nothing, and found the things that we rationally, or irrationally, think help us. And we’ve stuck with those. It’s a minefield out here trying to figure out what is legit and what is a scam.
Something that having ME/CFS taught me is how unprepared the medical system is for multi-system illnesses and conditions that predominantly affect women. I think there is this comforting idea that when you get sick, you go to the doctors and you get better, or in the worst case, it is terminal, and you do not survive. There is little in our everyday belief systems that accounts for going to the doctors and never getting better again. Yet for so many different illnesses, this is the case.
ME Awareness Month
One of the things with having an illness like ME/CFS that is really frustrating is that so many people have never heard of it. But it is a very common illness; it’s just that when you have ME/CFS, you tend to disappear from society, or hide it. So often, people don’t come face-to-face with it.
What this means is that when you meet a new person, they don’t have any idea of some of the basic things and ways in which the illness affects you. It can mean you have to talk about it a lot and justify that you are sick a lot. When people can’t see it, it is really hard for them to take it seriously or remember that it is reality. That is why raising awareness for the illness is so important.
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