M.E Myths Debunked: Part 1
Two years ago, when I was diagnosed with M.E, I knew a little about it because a friend of mine had it, but other than that I was clueless. From what I was told at the time of my diagnosis, I understood that I was going to have to make some changes to my lifestyle. What I didn’t know was that my life was about to change enormously, in every way possible.
Of course, so little is known about it by medical professionals themselves that most of the information I got was from charities and online advocacy groups. One of the things I heard a lot from other M.E patients was that one of the hardest parts of living with the illness was dealing with other people’s views on it. I didn’t know at the time how painfully true that would prove to be.
I’ve spoken a lot about the stigma that surrounds M.E and the disbelief and discrimination that patients face from both the public and the medical profession itself. However, I decided it was high time to call out some of the most common and pervasive myths about M.E and set the record straight. These are just a few of the most common misconceptions that M.E patients hear, and all the reasons why they are all, to be frank, a load of crap.
1. “Is that the one where you’re tired all the time? I think I must have that too then. Ha ha ha!”
I consulted my online M.E pals and this was the one that people reported hearing the most. It’s honestly so ignorant I don’t even know where to begin unpicking it. I think the confusion often comes because of the term ‘chronic fatigue’. I have lots of theories about why the medical institution still pushes this term, but that requires a whole separate blog post. Basically, the language used to explain M.E simply does not do it justice. Words like ‘tiredness’ and ‘fatigue’ cannot begin to describe the devastating impact this disease has on a person.
Because tiredness or fatigue is obviously something that everyone has experienced, when people hear this definition of M.E they can be very quick to assume that we are simply lazy or lack motivation. Everyone experiences tiredness or fatigue from time to time, but they just have to push through it, so why can’t we?
I think what many people fail to recognise, however, is that fatigue is different to tiredness, and that chronic fatigue is an entirely different thing altogether. Chronic literally means long-lasting. Ongoing. Incurable. Untreatable. Chronic fatigue is not something that can be fixed with a few early nights or a holiday. This isn’t the result of a busy couple of weeks at works, running around after your kids or too much partying at the weekends, M.E (or ‘chronic fatigue syndrome’) is a seriously debilitating disease that can make even sitting up in bed an enormous task. Our bodies are simply unable produce energy properly on a cellular level. We aren’t tired, we are sick. Our window of tolerance isn’t even in the same ballpark as yours. We get fatigued from attempting to make a cup of tea or brush our teeth. Severe patients haven’t been able to leave their beds for years. Believe me when I tell you that this is nothing like the tiredness that healthy people experience.
The reduction of M.E to merely ‘extreme tiredness’ (which is what the NHS website lists as one of the main symptoms), therefore, is as hurtful as it is inaccurate. It doesn’t even begin to cover the depth and the severity of this disease. There is so much more to it than fatigue: it affects the nervous, immune and digestive systems. It causes chronic nerve and musculoskeletal pain, as well as cognitive dysfunction and neuroinflammation. Latest studies show that at least half of the 11 major organ systems in the human body are affected by the disease. Any exertion causes a severe worsening of symptoms, known as Post Exertional Malaise. It quite literally affects the entire body and is profoundly, devastatingly debilitating.
So, next time you hear someone with M.E talk about ‘feeling tired’, please don’t be tempted to jump in with a “me too”, because our experiences really could not be more different.
2. “People with M.E are just faking illness, so they don’t have to work.”
Oh you guys, if only you knew how laughable this statement was. For a start, if we were going to fake an illness don’t you think we’d choose a better one? One that garnered sympathy and compassion, instead of suspicion and derision? One that qualified us to access some financial support instead of leaving a lot of us to live in poverty? One that doctors actually want to help you with, instead of writing you off as a hypochondriac, chucking anti-depressants at you and sending you on your way? I honestly can’t think of a worse illness to fake.
As for the notion that we are doing this to get out of work, you could not be more misguided. Every single person I know with M.E is DESPERATE to get back to work. Most of them had brilliant careers, in all sorts of professions. A lot of them worked in the public sector – looking after your sick relatives, teaching your children, policing your streets. This is far from a community of shirkers. People with M.E are, in fact, some of the strongest, most resilient people I have ever met. A far cry from what the world seems to think of us.
Furthermore, do you have any idea how much it distorts your sense of identity to not be able to work? Do you know how much we are conditioned to equate our value to our productivity? Do you know how much shame so many of us feel at having no careers and no financial independence? Do you know how many of us have never been able to move into a place of our own, start a family, have holidays, provide for our families? No one would choose this. Believe me.
3. “If you’re well enough to go out and do something fun, then surely you can work?”
I think the main thing that people tend to miss with regards to M.E is the idea of sustainable activity. Lots of healthy people see you managing to 'Do A Thing' once and assume this means that you can do it all the time. Wrong. For a start, people don’t see the preparation that goes into Doing A Thing. If, for example, I wanted to meet a friend for a coffee on a Saturday morning, it wouldn’t be a simple case of getting dressed and heading out of the house on Saturday. I would need to research the venue first, find out what kind of seating it has, if there is disabled parking outside, if there is an accessible bathroom etc. Then comes the period of preparative rest required before an activity of this magnitude, not to mention planning when I will have my shower or bath that week because if I do this too close to the activity, it will wipe me out.
Next, I’d need to pack my bag: ear plugs to help with sensory hypersensitivity, portable foot stool to help with orthostatic intolerance, fizzy water and salty snacks in case my nausea kicks in. Finally: the task of getting ready. Do I risk using up valuable energy to do my hair and makeup? Which outfit will require the least effort to put on? (This may sound like a silly consideration to you healthy types but believe me when I say that putting on tights or skinny jeans is like running a 10k when you’ve got M.E) All of this preparation before even making it out of the house. Sounds exhausting, right?
So, after eventually making it out of the house to Do A Thing there then comes the subsequent recovery. With all the best pacing in the world, some form of payback is inevitable. Depending on the size of the activity this will usually put me out of action for several days as I suffer with an intense flare up of symptoms and usually need a period of bed rest. So, in theory, yes, I can perfectly well Do A Thing. I probably even look healthy and well to you whilst doing it, because I’ve made the effort to do my hair and put make up on. Could I repeat said thing the next day? Absolutely not.
Now let’s put this in the context of paid employment. Do you know of many employers that offer contracts flexible enough to allow someone to do a shift and then recover for an unknown number of days before doing another? Do you know many employers willing to let you take a rest break every 30 minutes? Do you know many employers that even do the basic work involved in making their work spaces accessible? Do you know many employers willing to employ disabled and chronically ill people in the first place? Thought not.
This list is by no means exhaustive. In fact, this is just the tip of the iceberg. If you have M.E, I’d love to hear from you in the comments. What is the misconception that you hear the most?
And healthy people, be honest, before reading this blog or others like it what did you think M.E was? Had you ever heard of it? Did you have any preconceived ideas about M.E patients? Please feel safe to share these in the comments. No one will attack you for it. The fact that you have taken the time to read this post means that you are open to being educated and unpicking some of the negative misconceptions you might have previously had of this condition.
Part 2 coming soon.