Photo: Getty Images
Photo: Getty Images

ScienceMay 12, 2018

The illness people can’t see: living with Chronic Fatigue Syndrome

Photo: Getty Images
Photo: Getty Images

What is it like to have a disease that nobody can ‘see’ and which society can shame you for talking about? To mark International ME/CFS Awareness Day, Hannah Gibson writes about her experience with ME/CFS, and the struggle to have her condition legitimised in Western medicine.

When I was a young girl, my mother says that I skipped rather than walked. I stood on her knees at church and danced to the music. I pestered my father on the farm with endless questions about anything I could think of. I wanted to know everything. This did not slow me down. I want you to take a moment to imagine the amount of energy, life, and vitality this girl had.

The turning point, at 10, came after I became sick with a viral infection that was not considered dangerous. Yet as time went on, I never seemed to recover; rather I developed severe migraines, muscular pain, extreme fatigue, cyclical vomiting and a myriad of other symptoms that left me sleeping around the clock.

The doctors initially considered a brain tumour, then juvenile arthritis, and other conditions that might explain what was wrong. Doctors became frustrated, I could see they desperately wanted to find an answer they could treat, or at least pinpoint.

If I could have ripped my skin off, I would have. My clear, healthy looking skin. This was the thought that preoccupied my 10-year-old mind. I wanted people to see the disease that was making me so very sick. I wanted recognition. I didn’t want to feel like I was faking it because I couldn’t prove it.

I constantly felt like my skin was branded with some invisible ink, a patchwork of question marks nestled among the freckles. I thought, ‘if they could see the pain, they’d want to help me more than they do’. I lost my confidence in doctors who were supposed to make you feel better, to heal the trauma, to ease the suffering.

Yet these very doctors, baffled for answers, reverted to asking if I was happy at home, if I disliked school. That if I just tried harder, maybe I could walk. Their frustration, once aimed at finding a cause, was turned towards me. Since then I’ve noticed that a certain level of victim blaming can occur when you do not fit into categories that the medical profession expects you to.

When I was 13, I was diagnosed with Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome (often written as ME/CFS). It also has other names, including Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), Post Viral Fatigue Syndrome, and Low Natural Killer Cell Disease. In New Zealand, it was called Tapanui Flu after a number of people in the small Otago town of Tapanui became sick with debilitating fatigue. The derogatory term “yuppie flu” attributes all the signs of the condition to what people would consider burn out, minimising the reality.

It is often triggered by a viral infection like Epstein Barr Virus (EBV) but can also follow times of severe physical stress or trauma. It is estimated that around 16-20,000 people have been diagnosed with ME/CFS in New Zealand, a higher percentage than those with Multiple Sclerosis. In the United States, it is estimated that between 836,000 thousand and 2 million suffer it. The Associated New Zealand ME Society state that:

‘ME/CFS is characterised by incapacitating fatigue, (experienced as profound exhaustion), problems with concentration and short-term memory, non-refreshing sleep and inability to exercise. The fatigue is often accompanied by flu-like symptoms such as pain in the joints and muscles, tender lymph nodes, sore throat, poor temperature control and headache. A distinctive characteristic of the illness is post-exertional malaise: a worsening of symptoms following physical or mental exertion occurring within 12 to 48 hours of the exertion and requiring an extended recovery period. There is often a tendency to light-headedness and/or dizziness associated with postural change.’

A scene from Unrest (2017), Jennifer Brea’s film about the hidden world of M.E

ME/CFS is a diagnosis made by elimination, and for decades the conundrum of symptoms has baffled doctors because symptoms often show unremarkable test findings and have no bio-medical pathology to hang onto. Some physicians theorised that it is a disease of the mind.

Then in 2015, the Institute of Medicine in the USA issued a 280 page report that confirmed ME/CFS as a complex, multifaced and debilitating disease that is organic in origin, meaning it is firmly rooted in the body. The report gave ME/CFS a new name of Systemic Exertion Intolerance Disease (SEID), but it has yet to gain purchase, at least within support groups. However, the name signals a turning point by moving away from the word ‘chronic fatigue’, which is one of many features of the condition. I think most sufferers have a memory of people who talk about work related fatigue with the retort: “Oh, I’m chronically tired too. I wish I could rest as much as you do.”

What made the biggest wave was the report’s assertion that those with ME/CFS are more ‘functionally impaired’ than those with Multiple Sclerosis, Type 2 diabetes, and congestive heart failure – all of which the medical community and public consider to be grave conditions. Perhaps the publication will help legitimise the condition in the eyes of the medical community. For most sufferers, going to the doctor in search of answers regardless of how long they have had been sick can be a traumatic experience.

I think back to my 10-year-old self. To my parents, I had changed from someone who was active and full of zest to a girl that would sleep a lot, struggle with walking far and basic comprehension, and was constantly suffering.

Although symptoms can be seen by those who really look, they are made invisible by two things. Firstly, as for other invisible complex chronic illnesses, the experience of suffering is often ignored because there is no observable clinical evidence to legitimise it. When investigated, tests show unremarkable findings, or ones that don’t fully explain the full extent of symptoms. Spending most of your time in hospital or in a doctor’s office to then be told ‘nothing is wrong’, as many people experience, is just as hard to accept as the illness itself. We know something is wrong.

Secondly, this failure to easily explain and treat the illness leads to a more profound sense of invisibility, of not being seen or understood. It creates two types of identities within the invisibly ill community: those who look well but have a scientifically validated and detectable illness versus, and those who look well and stump the medical community.

Photo: DKart

In contemporary Western medicine, we see how some medical conditions are legitimised, and thus taken more seriously, over others. For example, when a viral infection attacked my liver, the diagnostic tests indicated it. The jaundice I developed reinforced something was wrong to those who looked at me. A different diagnosis in my teens of a rare congenital condition established me firmly as an anomaly in the medical community, a fascination. I had doctors calling from Australia, offering their services.

Conversely, when I have a relapse of the ME/CFS, I am reluctant to see my GP (who admittedly, is very sympathetic). Years of feeling shame for a condition has left me embarrassed to claim it. Years of mistreatment by experts who treated me as if my suffering is deviant, create the idea that there is a ‘normal’ to which I do not belong.

The continued lack of understanding further solidifies this message, so that you begin to internalise the way others see you. And experience has shown something that is invisible is likely to be questioned, rebuked and denied, leaving you with the stigma.

A caveat here is that because there is little understood about the mechanisms of ME/CFS for example, even the best of doctors who try their hardest to help have few options. What happens is symptomatic treatment, trial and error, and too often, doctors who shrug their shoulders. In Wellington, where I live, seeing a specialist physician within the public system is near impossible regardless of severity.

Of course, I don’t pretend to speak on behalf of everyone, or claim to know how others might experience chronic illness. Rather, I’m curious about how the state of invisibility attributed to physical conditions is used as a justification for discrimination, in medical care and seen in the lack of funding for tests and treatment.

Where we see fundraising campaigns for cancer, Multiple Sclerosis, among others, we see less discussion on illnesses like ME/CFS, Fibromyalgia, Dysautonomia, or Mast Cell Activation. Even though the Institute of Medicine’s report testifies that ME/CFS is more debilitating. Despite the many thousands of people suffering silently in their homes around the world, some who haven’t been able to leave their beds for years – the stigma remains.

Last year the documentary Unrest, an intimate portrayal of life with ME/CFS made by fellow sufferer Jennifer Brea, was released. As I sat watching I held my breath as Jennifer described and showed the debilitating effects of ME/CFS. I saw myself in her as she crawled up the stairs, or when she had a good day and used up all her energy, only to later crash, her body going into shock. The neurological symptoms, the bone crunching widespread pain, and the crushing fatigue that is akin to the worst stage of the flu, but never goes away – all was familiar.

As I saw my own story unfold in her narrative, I reached out to friends with the condition who voiced the same response: recognition mixed with feelings of validation and sadness. Validation because this documentary has got traction; people are engaging with the topic of ME/CFS and the awareness built creates almost a giddy feeling inside. Alongside the relief is the sadness in seeing your struggles depicted so acutely. It’s like plunging into cold water; surreal and scary, but bracing and empowering. I feel like I have an intangible connection to the thousands (or millions) of people who do not have a voice because they are too sick to fight the system.

Today is international ME/CFS Awareness Day and it’s what spurred me to write this article. When traction begins, those of us who have even the smallest amount of energy owes it to ourselves and others to raise awareness, fight for recognition so that our suffering does not keep being silenced by medical communities that have largely chosen to ignore over finding ways to understand and help.

The Spinoff’s science content is made possible thanks to the support of The MacDiarmid Institute for Advanced Materials and Nanotechnology, a national institute devoted to scientific research.

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