It is not your Fault

(This is the first blog post written after Retha passed away. Her loss is indescribable, but we are so blessed that her legacy lives in and around us. Thus, we dedicate all our future blog posts to her memory. No easy task. Hers are not shoes that anyone can fill. My dearest Retha, this is for you.)

We live in a time where disadvantaged minority groups have become far more vocal about their rights, from marginalised indigenous people, the Black Lives Matters, #MeToo and LGBTQ+ movements to those who are neuro- and chromo-diverse.

Do we as ME/CFS patients qualify as a disadvantaged minority group?

Ruth Dunn, a professor of Sociology at Houston Community College describes a minority group as “a culturally, ethnically, or racially distinct group that coexists with but is subordinate to a more dominant group”.

In my opinion, Ruth leaves out an essential minority category (I am sure there are more): Patients discriminated against by a significant large group of the medical profession. This does not only apply to ME/CFS/Long Covid patients, but anyone with a chronic and/or invisible illness.

What are some of the obstacles ME/CFS advocates have to overcome?

MEDICAL GASLIGHTING

‘Medical gaslighting’ has become a popular description of the bedside manner or lack thereof from a large percentage of the medical profession. In saying this, I do have to mention that there are many committed medical practitioners, as well as bio-medical researchers, who have dedicated their lives to research into the causes and possible treatment of ME/CFS/Long Covid.

But there is still a dire need for more widespread, global recognition by the medical fraternity. And many a ME/CFS patient still find themselves on the receiving end of doctors’ ignorance and misconceptions.

This is how MEpedia describe the term: “Medical gaslighting (indicates) doctors or medical practitioners who wrongly deny a patient’s illness entirely, for example wrongly telling patients that they are not really sick, or blame a patient’s physical illness or symptoms on psychological factors.”

Does that sound familiar or what? To crown it all, women are usually the first to experience medical gaslighting, their symptoms often diminished as histrionics or hormonal changes. And as we know, it is mostly women, who are affected by ME/CFS, while recent research shows this applies to Long Covid as well.

In this case, women are also victims of intersectionality. We are discriminated against as women, and as ME/CFS/Long Covid patients. I have even heard a theory that men are more stoic, and can handle pain better. Thus, less of them get diagnosed with ME/CFS/Long Covid.

To those who believe this, I want to ask: Have you ever given birth?

Anyone with severe ME/CFS/Long Covid, male or female, will tell you that one cannot push through any strenuous activity without crashing. In fact, a recent research study indicates that there is a reason why more women than men struggle with Long Covid.

“Differences in immune system function between females and males could be an important driver of sex differences in long COVID syndrome,” the study said. “Females mount more rapid and robust innate and adaptive immune responses, which can protect them from initial infection and severity. However, this same difference can render females more vulnerable to prolonged autoimmune-related illnesses.”

And yet, there are a significant number of men, who have been on the receiving end of medical gaslighting too.

One example is Mlindeni Gabela, the South African ME/CFS/Long Covid Foundation’s Long Covid ambassador, who contracted Long Covid in early 2020. Since then, he has experienced debilitating symptoms which stopped him from being able to go back to work full-time. When all his tests came back normal, his chronic symptoms were dismissed as “largely psychiatric”.  He is still battling for his condition to be fully recognised.

In 2021, I read an article written by a British doctor who developed Long Covid. He was shocked by the denial response from the doctors he consulted. Like so many ME/CFS/Long Covid patients, he was told that his condition is “all in his mind”. For the first time he had an understanding of his ME/CFS patients’ battles.

Not long afterwards, I read an article written by another doctor in the UK, denying that Long Covid exists. It is this discrepancy in the medical fraternities’ approach that cast a dark shadow over the treatment of ME/CFS and Long Covid patients.

I ask myself how can we expect family and friends to be supportive when many health professionals are in denial? It saddens me when I see posts on Facebook support groups still requesting referrals to doctors, who are “sympathetic” to ME/CFS/Long Covid.

AN UNRECEPTIVE LAY AUDIENCE

Many of us have family, friends and colleagues, who might not fully accept or understand our situation. As the old adage goes, you don’t get true insight unless you have walked in someone’s shoes. All the more so when it is an invisible disease where one looks seemingly healthy.

That is why I always recommend to ME/CFS/Long Covid patients to take their spouses along to their medical appointments. Hopefully health professionals will take the time to educate our support people too. But this is of course still dependent on the nature and knowledge of the health practitioner, as well as the receptiveness of the audience. And it does not help if people with large public platforms continue to spread misinformation.

Recently, I was looking for some laid-back reading, and happened upon JK Rowling’s most recent Cormoran Strike detective novel, which she wrote under the nom de plume Robert Galbraith. Initially, it delivered the escape I was looking for. But then, out of the blue, two characters popped up, both with ME/CFS.

I was gobsmacked at the way they were portrayed. Both came across as self-serving, petulant and manipulative, using the internet to push their own agendas. She had clearly done her research as she mapped out possible treatments and co-morbidities, but she was way off base when it came to the veracity of the experience of the illness or the nature of the patients suffering from it.

Right there and then, all enjoyment of the book disappeared. And in my mind I started writing a letter to her, telling her that ME/CFS/Long Covid is a physical disease, and not a figment of our imagination. That most of us are not anything like the characters she portrayed. That the ME/CFS patients I have met, are all inspiring examples of resilience and determination. That we strive to lead fulfilled lives in spite of our debilitation. That if we had a choice, we would never choose to become a burden on our family or society alike.

And most of all, that she has absolutely no idea, because she has not lived our experience.

But the words stuck in my throat. Through my mind went: Why would she even listen to me? She has already made up her mind. All that would happen is that I will be perceived exactly like the characters she portrayed, neurotic and over-defensive. I was overcome by a feeling of helplessness, and in the end did nothing.

SELF-DOUBT

And this is where self-doubt comes in. If we struggle to be believed by the medical community, how can we not doubt ourselves too?

Whitney Dafoe (39) contracted a virus when he was travelling the world as a young photographer, and as a result, developed the severest form of ME/CFS. So much so, that his father, Prof Ron Davis, a researcher at Stanford University, has dedicated all his research to finding the causes of and possible treatments for ME/CFS.

Whitney has been confined to a dark, soundproof room for many years. Due to profound lethargy, he has stopped speaking a while ago, is hypersensitive to almost any stimuli, and has to be fed through a tube. His only contact with the outside world is via his blog and Instagram page, #whitneydafoe. Here he outlines his daily experience of ME/CFS, while raising funds for Prof Davis’ research.

In a recent Instagram post he writes: “If I could be doing something I would be. I never choose inactivity. If I am inactive it is because I am too sick to be active…It is so hard not to blame myself, to think I could somehow do more. To blame the discrepancy between my dreams, and what I’m able to do, on my mind or thought processes….This is suffering that is caused directly by the prejudice we face”.

These words could have come straight from my mouth. But it is his last words that really hit me square in my solar plexus. He writes in capitals: “IT IS NOT YOUR FAULT.”

It is not our fault.
It is not our fault.

How tragic that in today’s times, we still have to tell ourselves that it is not our fault when we are suffering from an all-to-real medical condition. We don’t need, or for that matter want, that added stress of second-guessing ourselves. 

OUR MEDICAL STATE

There’s this ironic joke (actually not funny at all), that starts with the question:  How many ME/CFS patients attended their local support group? The answer: None. Nobody had the energy to travel to the meeting.

I developed renewed respect for Retha’s passion and tireless campaigning for the South African ME/CFS/Long Covid Foundation when I tried to complete this blog post. Part of the reason I never wrote that letter to JK Rowling was that I felt simply too tired and brain-fogged to even attempt it. This blog post alone took two months to finish.

I don’t know how Retha managed to never let up. And this on top of battling ME/CFS and cancer. Even in her last days, she was still organising press coverage, and supporting ME/CFS/Long Covid patients. Today, a whole team of us is trying to continue what she achieved single-handedly. 

The reality is that we can barely keep up. This is why I love the “Millions is Missing” campaign. What a perfect way to describe our situation of living with a life sentence rather than a death sentence. Many of us are under house arrest. That is a fact.

IS IT WORTH CAMPAIGNING?

I often wonder why we have to explain ourselves to others all the time. What does it do to our self-worth? Isn’t it enough to struggle daily with the lived experience of having ME/CFS/Long Covid? Keep going when your body is refusing to give you a break?

And I wonder what the point is of trying to educate the unreceptive. How does one preach to those who don’t want to hear you? To what extent do we have to strive to be seen and heard? And yet, we cannot pass up the opportunity to become ambassadors for the ME/CFS/Long Covid cause.

Is it worth continuing to be advocates for our rights to more research and treatment solutions?

Absolutely, on and on.

Do we have the right to full acknowledgement, acceptance and engagement from the larger medical profession of the physiological etiology and severe debilitation of our condition?

Hell, YES!

Thus, in a perfect world, I would like to be that person, who is an advocate for ME/CFS/Long Covid awareness and research, without being a football for others’ opinions. Without a cost to myself. Let us always remember IT IS NOT OUR FAULT.

Thérèse Fensham

Thérèse is a poet, writer and editor, who developed ME/CFS/FM twenty-three years ago as a result of a bacterial infection contracted from unpasteurised milk. She is currently mostly housebound.

This article does not necessarily reflect the opinion of the SA ME/CFS/Long Covid Foundation.