THE ‘INVISIBLE ILLNESS’: WHAT IT FEELS LIKE TO LIVE WITH CHRONIC FATIGUE SYNDROME OR ME
Style readers share their experiences of the stigma and misunderstanding that women face
Amber Bryce
The Sunday Times, March 24 2019,
‘My doctor told me never to say I had this condition, to be careful talking about it, because I would face stigma and people may not employ me in the future,” said Lucy, 29. “Imagine being 15 years old and being told you can’t talk about something that is taking over your life. I felt so ashamed.” Lucy’s is just one story from the many we received last week after The Sunday Times published a comment piece by Rod Liddle on ME (myalgic encephalomyelitis), the so-called “invisible illness”, which affects about 190,000 women in the UK. The accounts we heard from those who were affected all shared common themes: not being listened to by doctors; unsupportive employers; being misunderstood by even close friends and family; periods of depression; and anxiety from the feeling of helplessness that comes with this condition. “I’ve been made to feel a burden by former boyfriends and friends,” Lucy added. “It has made me afraid to open up.”
In 2019, society’s understanding of ME, also known as chronic fatigue syndrome (CFS), is still woefully lacking. ME is a long-term neurological condition that affects an estimated 250,000 people in Britain (and more women than men, in an approximate ratio of 4:1). It is a complex and extremely debilitating illness that leaves many patients with a lower quality of life than those with depression, schizophrenia, chronic renal failure and a number of cancers. Yet still no cure exists.
Liddle’s column prompted anger and upset among many of our commenters, with women in particular voicing what it’s like to live every day in the grip of this invisible illness. Here, we share some of their stories. Please join in the conversation and share your own experiences in the comments below.
Joanna, 25
My ME seems to have been triggered by major jaw surgery that I had in August 2014. After the operation, my jaws were wired together for two months and I was restricted to an entirely liquid diet during that time; I lost a great deal of body weight and lost almost all energy for day-to-day tasks. When I finally had the wires removed and began eating normally again, I thought I would regain my strength and energy, but that never happened. After almost a year of suffering the symptoms with no answers, I was diagnosed with ME in July 2015.
My ME was met with a lack of understanding. Well-meaning family and friends would say things like “I feel really tired sometimes, too” or “I only had five hours of sleep last night — I know just how you feel”. Then there were the downright ignorant, who told me I was “just lazy” or that I “never bother to come out and socialise”. It added a lot of pressure to a strained long-term relationship and we eventually broke up
In terms of my career, the diagnosis had a huge impact. I had studied geology and planned to work in quarrying, but I was told that I would never be able to sustain such a physically demanding job long term, so I became a teacher.
However, not long into my career, my flare-ups became more frequent and far more intense. I turned to my doctor for advice. They suggested that I should limit myself to three days of work each week. My employer sent me to an occupational therapist to seek an impartial opinion, who agreed wholeheartedly with the GP’s advice. Unfortunately, my employer was not prepared for this verdict and I was accused of malingering and endangering students’ learning. They told me I could choose between working 4½ days a week, or I could quit.
It was heartbreaking, as I loved teaching and it felt like such an injustice to be accused of not caring about my students. Every ambition I had was stripped away from me because of my illness. I spent months job-searching and claiming employment and support allowance before a friend suggested I continue teaching as a private tutor. It was the perfect solution — I could continue to do the work that I loved, but I could manage my own workload and dictate my own working hours. I gradually built up a client base and I’m now running my own tuition business.
I have found that people are especially ignorant of young people suffering with ME. The nature of my invisible and changeable illness means that some days I appear just like any other person in their twenties — active and carefree — but other days are spent in bed, unable to move without searing pain.
