An estimated 17 million people around the world suffer from the condition myalgic encephalomyelitis/ chronic fatigue syndrome (ME/ CFS) - including 250,000 in the UK - which affects four times as many women as men. Symptoms include extreme fatigue, muscle weakness and pain, as well as cognitive issues such as forgetfulness and confusion, and sensitivity to light and sound.
In 2024 - almost 70 years after it was first identified - science still understands little about its physical cause, meaning medicine is often ill-equipped to help. This is a frightening reality for the quarter of patients who suffer severely, leaving them housebound, bedbound or hospitalised. All three were the case for Isabelle Handley-Allen, 39, who counts herself lucky to be alive. This is her inspirational story of hope, in her own words…
The age of 13 is a cruel one to discover that your life is unfolding differently from others. Like any teenager growing up near Leeds, I just wanted to fit in with the classmates around me, who were also navigating hormones and social pressures. Yet the universe had another plan for me.
A series of recurrent chest infections, from which I never recovered, had left me battling unexplained symptoms. They included severe fatigue - the kind of tiredness that puts a barrier between you and the rest of the world, and which means you hardly have the energy to be a full human being. More pertinently still, I experienced body pain to the extent that I couldn’t think straight, as well as constant headaches and disorienting dizziness.
Despite tests to rule out other conditions, my GP had no suggestions for treatment other than to ‘see what happens’ and agree with my mum that it was best I attended school part-time - which created further distance with my peers. My family and I thought I probably had ME/ CFS, although I wasn’t diagnosed officially at this point.
Fortunately, by the time I reached 18 years old, things were looking up for me. I was able to pace myself and manage my symptoms well enough to enroll at a university that I could commute to from home. Alongside this, I was able to nurture my early love of fashion by working part-time in clothes shops.
Because, even then, I had a hunger for life and so much I wanted to achieve. I was independent, driven and wanted to travel - and I certainly didn’t want to rely on anyone else. When I was 20, I moved to Milan - first to study and then to put my Italian and French language skills to work as a translator and interpreter. Eventually, my job took me to Brussels - where it felt like I was finally living my dream life.
But during this time, my ME/ CFS lingered in a mild form - I was able to thrive in my career and embrace life living on mainland Europe, but it was a constant balancing act. Every so often I would over-exert myself and pay for it - with fresh bursts of pain and fatigue. A car accident I was in, when someone rammed into me at some traffic lights, also triggered a flare-up.
Not that many of those around me would have known what I was struggling through. I stopped telling people I had ME/ CFS after it became clear that many in society still believed the ‘it’s all in her head’ rhetoric - even though I knew this very much wasn’t a mental illness. There was - and, in some ways, still is - such stigma around this condition.
Looking back now, it was ridiculous that I tried so hard to hide that my body was failing me - when it was a very real part of me. Masking such disabling symptoms was really hard work - on top of essentially being my own healthcare team of one.
Years on from that first GP, so many doctors - themselves without answers - told me that this was something I had to learn to live with. Once more, just like when I was in my teens, I simply wanted to experience life like everyone else.
How the symptoms almost killed me
But it was soon clear that my path would be different again. From 2010 my symptoms got steadily worse, and in 2014 they became so bad that I had to make the difficult decision to move back from Brussels to Yorkshire.
Upon my return, I went downhill further, becoming housebound by the end of 2015. In 2016, I moved back in with my parents, and had to stop even the translating work I had been doing from my computer.
I’d had some renovations done on my home to make it more suitable for me to live in with my condition and decided to move back in. However, on that 20-minute journey home, something happened - it was like my body just went ‘enough’ - and from that day, the 13th of August 2018, I was bedridden.
I could literally not move my body by myself - it was like I was paralysed. My mum had to move in to do things like help me onto a commode near my bed to go to the loo and hand me glasses of water because I was too weak to reach out myself. My older sister eventually took compassionate leave to support her, because I needed so much care.
It was so frightening, feeling helpless and vulnerable - my brain almost compensating for my body by being very much alive and going a million miles an hour. What’s more, by this point I’d received my official diagnosis - which also opened me up to the traumatic experience of being without support, but able to google the condition to find ME/ CFS patients who had died or never recovered.
By Christmas that year, I was dying - there was no question about it. I couldn’t eat, because I could hardly swallow or move my jaw, and I was six stone on a 5ft10 frame. My family, with whom I’m so close, were desperately trying to keep the weight on me. Blending up all my food and feeding me high-calorie drinks.
Alongside fatigue, I was constantly in pain. The kind that even the strongest painkillers can’t take away, with any activity or movement making it worse. I quite literally got through the days and nights of agony minute by minute.
I was preparing to take what I felt like was the next logical step - and which I don’t consider to be a mental health issue - considering the constant agony I was in from my body. The very weight of my tongue on my teeth gave me such searing pain that made me sweat. I couldn’t live like this - and was considering how to euthanise myself.
I was admitted to the hospital on the brink of death in February 2019, taken in as an acute case since my liver was failing because I was so underweight. I was moved to endocrinology and then gastroenterology, where I spent a couple more months. During this time I was in a state of constant fear, because of how out of control my body felt, and while I’m not religious I prayed.
After years of GPs telling me that, in a sense, my ‘healing’ was on me, I really took on that responsibility to ‘think’ and ‘will’ myself better - internalising that it was my fault that I was still poorly, when it couldn’t be further from the truth. This had sunk into the point where I was having my nose tube fitted - causing me to retch and lose my vision - and I remember wailing:‘What am I doing wrong?’
It was an awful time made even more difficult by how the doctors and nurses did not understand ME/ CFS. They thought I was after special treatment, but I was too weak to even press the ‘call’ button, so my mum and sister took it in turn to stay with me overnight. It got to the point where I lost the ability to talk or even whisper, and I had to communicate by grunting. One ‘grunt’ meant ‘yes’, and two meant ‘no’.
My medically unexplained symptoms meant they didn’t know where else to put me and so, in May 2019, I ended up being moved to another hospital - to the only inpatient ward in the country for people with ME/ CFS. The eight-bed specialist rehab ward, National Inpatient Centre for Psychological Medicine (NICPM) at Leeds General Infirmary, was on my doorstep although I’d never heard of it.
The fact that ‘psychological’ is in that name is something that still frustrates me to this day. It’s a hangover from now-debunked research suggesting that ME/ CFS was a mental illness [it is classified by the World Health Organisation and NICE as a disease of the nervous system]. The entire time I was at the NICPM, I didn’t receive any psychological treatment apart from a bit of talking therapy - during which I was told that my mental health was ‘actually quite good’ considering the debilitating nature of my symptoms. Indeed, it is amazing I wasn’t depressed.
My road to recovery
That I’m still here today is thanks to my mum. She would always say ‘you will improve, you will improve’ - perhaps because she didn’t want to accept the alternative. I didn’t meet a single other patient for several months, but she would talk to them and bring back stories of hope to my bedside - like the girl who had gone from bedridden, to in a wheelchair, to walking. That was the biggest encouragement and reassurance.
It still makes me upset that some staff thought I was poorly because of my mum (munchausen syndrome by proxy was suggested) but she was simply fighting my corner. I’m so grateful to the ward for slowly getting me back on my feet - including to a brilliant occupational therapist, to whom I owe so much - but I wish they had treated her with more respect.
With a chronic illness that disabled me to this extent, I just had to stay positive. By autumn in the hospital, I was slowly coming back to myself - while I was mostly room-bound, I could take a few steps and go to the loo.
I hadn’t been able to even hold a phone or tolerate looking at a screen. But I remember watching Trinny Woodall’s Closet Confessions on Instagram every Saturday morning. I would watch her for five minutes, then pause to rest from the processing required of my brain, and then repeat. I did the same with Elizabeth Day’s How To Fail podcast, listening to ten-minute chunks.
For a long time, I was too unwell to really care about my appearance - we had cut my long hair short and at one point I didn’t bathe properly for five months. But as I recovered, so did my passion for fashion, and also beauty, reignite - and I learned that on the female-dominated ward, it was a sign. The hair dye arrives, and then the parcels of clothes. I subscribed to Beauty Pie and began to order things from H&M and Zara. I still remember the first time I made myself up - putting on a tinted moisturiser, blusher, bronzer, and highlighter - to video call a friend.
Because even in the depths of my illness, there was still Isabelle in there. At my most unwell, I would select the combination of T-shirt and knickers I wore as I lay bedridden. From the moment I was able to get into proper clothes again, I was always wearing ‘an outfit’. My mum would buy me fabulous long satin skirts - with elasticated waistbands for ease of dressing - and I would lie on my bed dressed up. Then, when I could walk, I would lean in the doorway off my room so I could see people and show off my look.
I was discharged two days before the world went into lockdown in March 2020 - when I still could only walk about six steps and not sit up for very long. Thankfully, I lived right next to my sister and had a south-facing terrace upon which I’d absorb the summer sunshine as I avoided Covid-19 at all costs. As the nation declared itself tired of being housebound just months in, I couldn’t help but think that my own life had been limited for years.
Since then, my recovery has been gradual - but, importantly, upwards. It feels a miracle that I can lift up a glass of water to give myself a drink and walk to the door. Things that we all naturally take for granted.
I still have to be careful not to push my body too hard and I’ve learned that self-discipline is the best form of self-love - walking the line of doing enough to improve, but not too much to set me back. Along with the fatigue, I’m still managing pain that is very present despite the medication I take for it.
I’m grateful for my family. It was such a horrible and dreadful time for them, and my heart is so grateful. I often cry happy tears when I think how worried I was that I would never get to spend proper time with my dad again, who was going through his own health journey. Now he comes round to help me with the garden or I go to my parents’ where we sit by the fire with a cup of tea.
Similarly, I’m grateful for the other people who have been there for me. When my health started really declining, my boyfriend left and two of my close friends just completely fell away - which was really hard. While social interactions sometimes felt overwhelming, I was still here at the other end of a WhatsApp message. However, there are those who have been with me through thick and thin - and I’ve also made new bonds. A group of us female patients from the ward are still close now, and we recently met up for a long weekend.
And then there’s my job. I feel so fortunate that I’ve been able to be self-employed and work alongside my ME/ CFS - my style-focused Instagram account has gone from strength to strength, just as my body has. I’m so happy for what I’ve been able to achieve, given I’ve still only 30% the energy of a healthy person, but I’ve had to rein in my ambition and desire for productivity. To be realistic about what I can manage.
But I want you, reading this, to know about loss. When you have a chronic illness like this, there is so much of it. You lose yourself. You lose the future you thought you’d have. You lose relationships, and the ability to have a family. You lose your career and your friendships. You lose so much.
This is why it makes me angry that there is still such a lack of research into ME/ CFS. It makes me angry the lack of recognition for a condition - whether you have it moderately or severely - that has such a huge impact on you and your family’s life. I’m here against all odds, and I hope that my story can give others hope.
I’m celebrating my 40th birthday next month by going to Milan for the first time since 2015. In that hospital bed, I was so sad to think that I would never go back - a place where my heart feels at home. To never walk down my old quaint street, to soak in the atmosphere of the lively squares, to take in the fashion that swarms the streets and see the beautiful views of the city. I’m so lucky.
More Deep Dives:
- Have we had our fill of fillers?
- One writer on how she learnt to love herself
- When mixing finances and friends, in a cost-of-living crisis, goes wrong
Lauren is a lifestyle journalist with digital and magazine experience. Find her covering all aspects of wellness - from fitness, nutrition and mental health, to beauty and travel. Morning HIIT, a lunchtime oat latte and evenings ensconced in a hyaluronic acid-infused sheet mask are her own personal feel-good pillars.
