Why I'm Disappointed in the Lack of Awareness About ME/CFS Almost 20 Years Post Diagnosis

We are 19 years on now from the year I was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The year a GP said to me in the most patronizing of voices, “you need an exercise bike” during an appointment that I’d been carried into by my stepfather as I couldn’t walk or hold my own body up.

During the years I have lived with ME/CFS, this illness has seen me at varying levels. On one end of the spectrum I have been bedridden and completely unable to care for myself. A stage where I remember wondering how it was possible to feel so unwell and still be alive, every moment was excruciating and I literally felt trapped in my own body. This time saw me unable to feed myself, hold a conversation or sit up unaided.

I have also seen myself at higher functioning levels, stages were I can live a fuller life. Perhaps I’m able to take a gentle stroll in the countryside or meet a friend for a coffee, as long as I pace myself and take care not to over do it. At this level I can often appear perfectly OK to an outsider, especially with my hair and make up done, but beneath the surface symptoms and fatigue are always present. The slightest overexertion beyond my boundaries will see me relapse back into being unable to function once again.

ME/CFS can ruin lives; it can rob people of their dreams. It can stop people from living the life they yearn for. Yet, there is still a huge misunderstanding about the severe physical and psychological implications it imposes on people’s lives.

Medical ignorance 

Ignorance in society is sadly still an issue when it comes to ME/CFS, but even more troubling is that ignorance in the medical profession is also commonplace.

We are taught as children that when you get sick, you go to the doctor and they make you better, but sadly in reality, this isn’t always the case. Although western medicine has its place and works miracles for certain illnesses or physical injury to the body, there are huge gaps when it comes to treating chronic illnesses such as ME/CFS. What is worse than the lack of treatment, for me, is the ignorance. The lack of care and support. The lack of research and funding.

I rarely visit my GP for anything to do with this illness, because I am more than aware there is literally, nothing that can be offered other than a course of cognitive behavioral therapy (CBT) or graded exercise therapy (both of which I have of course tried). A few months ago during an appointment with my GP for something unrelated, I mentioned I had ME/CFS (he was unaware despite my medical records being in front of him) and his answer was, “Oh yes, I know what that is, I read a book on it once.” Really? One Book.

This is what we are dealing with in 2019. Doctors who sit proudly, announcing they have read one book on ME/CFS. His following comment was ‘you need to do graded exercise.’ I was so angry. I usually remain calm, having just about heard it all throughout the years. But in this moment, I felt anger bubbling up, because 19 years on, hundreds of books, research, therapies, doctors and experimental treatments later, I remain with this condition and am being told by a medical professional that I need graded exercise, as if it’s some kind of magical cure that has bypassed my awareness.

When it comes to doctors, the absolute best you can get (in my opinion) is someone who empathizes and understands what ME/CFS is. Someone who listens to you, respects you, and humbly says, “I wish we could do more.” The worst you will get is ignorance, rudeness, and being treated as if you are a hypochondriac. You might get neglect and dismissal, or a doctor who is oblivious to the latest medical research that shows ME/CFS is a biological, multi-systemic illness that can be extremely severe.

Luckily, we do have some incredible medical professors, doctors and researchers out there who are doing amazing things, such as Nancy Kilmas and projects such as the London Biobank, but the reality is that funding for ME/CFS research to help find a potential cure is massively lacking. I pray for the day when funding is increased and medical expertise, support and awareness are commonplace.

Ignorance in Society

The misconceptions and stigma surrounding ME/CFS are also still present in society. Years after the 80s when it was called “yuppie flu” we are still encountering comments and remarks such as…

“It’s just laziness.”

“Bone idle.”

“It’s all in the mind.”

“Pull yourself together.”

“Everyone gets tired.”

“Can’t you just push through it?”

Those remarks above may well have triggered you if you, like me, are living with ME/CFS. I’m sorry. If those words were horrible to read, they were also horrible to write, but I am (sadly) pretty certain that if you have this illness, you too will have come across those comments during your time with it.

Anytime I hear, read or experience comments such as those, my heart breaks. It sinks.

All of the people I know who have ME/CFS are ambitious, determined, incredible people desperate to live a normal, full life.

Personally, I do all I can to help myself be as healthy and strong as is possible. I have tried endless treatments and spent thousands of pounds in my ongoing quest for wellness; however, I am still not cured. I have missed huge life events, like my sister’s hen (bachelorette) party, as well as half of her wedding. I’ve missed holidays, gigs, and the opportunity to build a career and start a family.

There have been many, many smaller, but just as important moments, where I have been in bed rather than out there living. We all push through as much as we can; in fact, I push my body harder than I should most of the time. The fatigue (and other symptoms) experienced with ME/CFS are so vastly different to “normal tiredness.” Pushing too far beyond the body’s current boundaries can lead to devastation and complete collapse.

Shame

On top of the ignorance, the stigma and the medical neglect, there is also one last more thing that many people with ME/CFS still experience. I am talking about shame. 

There are numerous personal experiences I could share here, but I’ll tell you about one with a sleep specialist I saw last year. Upon beginning the appointment, he asked, “So, what do you do for work?”

I explained I wasn’t currently working due to the severity and fluctuating level of ME/CFS I have. There is always a wave of shame when telling people this; it is a question that many people with chronic illnesses who can’t work dread hearing. There is nothing more I would like than to be able to work again. It’s not my choice, yet shame washes over me when I have to admit I’m not able to work at the moment. It’s a horrible feeling.

This doctor’s follow-up comment to me was, “So you’re a mother? A housewife…?”

I responded simply with, “I’m not a housewife. I’m single. I’m not a mother. I don’t work. I am not currently anything.”

I looked him directly in the eye as I said these words, suddenly aware of all the times in the past that I had tried to justify my current situation. I realized I no longer felt the need to do so. I said it as it is. I was done with how we are treated, and I was done with the shame.

It saddens me today in society, so much emphasis surrounds what we do for work, our achievements or external milestones reached. We are so much more than that, and this is something which has taken me years to learn. To accept that I am enough, and I am worthy, whether I am working or not. Whether I am a mother, or not. Whether I am a wife, or not.

I was astounded by this medical professional’s questions to me that were completely irrelevant to the reason I had gone to see him. It was as if his brain couldn’t make sense of me just existing, as I am, without some sort of traditional life role to clarify my identity.

It can be humiliating when as patients we are faced with questions such as these, especially when asked in a way that is void of compassion.

We are missing out on so much already, without having it shoved in our faces by the medical professionals we go to for help and support.

I hope it won’t take another 19 years for doctors and society to be able to understand ME/CFS, and learn that we are all worthy of attention, treatment and compassion.