I'm 33 and can barely stand up on a train. I'm proof ME is real

Telegraph

19-05-2025

It's a Tuesday afternoon and, like many across the capital, I'm attempting to conquer the Tube at the end of a long working day. It's difficult enough for the average Londoner: figuring out whether you're going north or southbound, when you need to change, why there's yet another delay on the Central line.
But there's another layer of stress for me – another 10 layers, in fact. I'm crammed onto the Tube platform and my body feels like it's failing me. I'm on the verge of passing out and physically cannot stand any more. It's a feeling which has become all-too common, but is just as terrifying each and every time.
Visions of me splayed out across the grimy Tube platform spring to mind, until my train finally rolls in and a kind woman – spotting my hidden disabilities sunflower lanyard – offers me her seat. Yet another near miss.
You might pass me on the street and not realise I'm disabled. But, I've got ME. Not chronic fatigue syndrome, or any of the other labels that seem to somehow diminish its seriousness. It's ME – myalgic encephalomyelitis. 'Myalgic' means muscle pain, 'encephalo' refers to the brain, and 'myelitis' is inflammation of the spinal cord. It affects every part of the body – fatigue is just one of many symptoms.
It's taken years for me to get to the point where I can live what appears to be a 'normal' life; I'm not wheelchair-bound, I'm married, I can sometimes drive, and I manage a team as a senior underwriter for a leading insurer in London.
It feels like I've tried every treatment under the sun in my attempt to get 'better'. The Fodmap diet, lymphatic drainage, Botox for migraines, reiki, vagus nerve stimulation, hypnotherapy for pain – the list goes on.
It was the summer of 2015 when my life changed completely. I was in my early 20s and in the best shape of my life. However one day, I began to struggle with flu-like symptoms and decided to see a GP as they continued to worsen. She thrust a mental health questionnaire my way and sat during our appointment with her coat on, rushing me, clearly ready for the end of the day. So I soldiered on, with no diagnosis, continuing to feel more unwell.
In November 2015, I was diagnosed with norovirus. However, whilst symptoms of the virus typically last for two to three days, I continued to feel ill for months and rapidly lost weight. I developed unexpected symptoms including migraines, eczema, night sweats and asthma, and I couldn't keep any liquid or food down.
Luckily, I had private health insurance so I initially went down that route, going through all the tests and scans to rule out every possible cause. But to no avail.
My symptoms continued to build throughout the year and I felt completely hopeless. I could no longer work so was on statutory sick pay and had to host a lodger to help pay my mortgage. At the time, I was quite new to my job so I was conscious about immediately being labelled 'the sick one'. However, it was a stigma I found I could no longer shake.
I know there's this perception about people with chronic illnesses being lazy but the majority of people I've met with ME have been career-focused and 'go-getters'. At the time of my diagnosis, I was 23. My career was just starting, I'd just met my future husband, and I was active and sociable.
After months of testing, I was no closer to an answer. It felt like my body was failing me and I didn't understand why. It was heartbreaking and I was ready to give up. However, I knew I couldn't – I went back to my NHS GP with my husband for support. That's when I finally received the validation and explanation I'd been desperately looking for.
In March 2016, I was formally diagnosed with ME after months of further tests. Whilst the direct cause of ME is still unknown, it seems to be triggered by an infection, virus or illness. The symptoms overlap significantly with those of Lyme disease and long Covid.
The GP sent me to Cossham Hospital where I began to work with an occupational therapist in July 2016. We focused on pacing, where you try to maintain the same energy levels throughout the day, every day. My FitBit has been great for that – it monitors my heat rate, my step count and my heart rate variability.
I was also referred to group therapy sessions. They're a nice idea in principle. But I remember sitting in a stuffy hospital room for hours on a Tuesday afternoon with a group of people 'just like me'. We would talk about how ill we all are. Occasionally, someone would fall asleep or spill a drink.
All I wanted was to not be there – I wanted was to get back to work, to a normal life, not spend hours discussing our mutual incurable condition. After attending two of those sessions in October 2016, I quickly made my thoughts heard.
Graded exercise therapy (GET) was also recommended. Great, I thought. Before the illness I absolutely loved working out. In fact, I was an avid gym goer and met my husband there.
I was told to 'keep persevering' because apparently exercise is what I needed to improve my symptoms. Yet, every time I felt well enough to exercise, I would relapse and end up back at square one, with post-exertional malaise (PEM). It made me feel like a failure and I finally accepted I just couldn't do it. After that, I didn't try again for eight years.
As of 2021, GET is no longer officially offered as a treatment for ME – that tells you all you need to know.
By that point, I just didn't feel heard; it's clear the NHS has a long way to go in its understanding and treatment of ME. That's when I decided to take matters into my own hands.
I started my new job in September 2024 and was honest about my condition at the interview stage which meant we agreed upon a flexible working pattern. I work from home, but sometimes travel into the London office from Cheltenham, with the important caveat that it depends on careful planning, support and my symptoms.
This works really well because I can use my non-working day to attend appointments. I love my job and they've been really great with the adjustments I've advocated for, but it's taken a long time to get here, after years of struggling with long hours, inflexible patterns and my confidence.
The treatments that work best for me are red light therapy, massages, acupuncture and pacing. I prioritise a healthy diet and have a strong sleep routine too.
I tend to eat little and often. My diet is varied and balanced – fish, chicken, and vegetables are nutritional staples. I prioritise protein and complex carbohydrates and try to avoid foods that release energy quickly, such as sugar and caffeine. Pacing throughout the day is key to maintaining energy levels.
My bedtime schedule is strict to help me get at least eight hours of sleep each night. Before bed, I take amitriptyline and magnesium and I always have an Epsom salt bath to relax my muscles. I listen to brown noise (characterised by a deep rumbling sound, such as thunder or heavy rainfall) while sleeping to help reduce disturbances.
All of these treatments help me to manage my symptoms, rather than provide a cure. Sometimes they work, sometimes they don't, and sometimes they actually make my symptoms worse.
I was also recently diagnosed with ADHD which my therapist believes has played a part in my ability to keep pushing forward over the past 10 years. Both conditions are neurological – whilst my ME body wants to give up, my ADHD brain won't let it.
I'm incredibly lucky that I have an amazing support system of family, friends and colleagues. So much of this journey is shaped by luck – where you live, who supports you, what you can afford. Some people with ME have sadly died whilst others are tube-fed or permanently wheelchair-bound, unable to work at all. Many don't have the resources to trial alternative therapies or seek specialist care.
Now, I'm in a place where I can work, see friends and even have weeks where I can attempt a workout at the gym – but I'm far from cured. It's when I'm asked to be a bridesmaid, and find myself thinking about all the adjustments I'll need just to make it to the hen do. Or when I see people my age having children and wonder if that's even possible for me.
There's still a long way to go in improving awareness around and treatment of invisible illnesses such as ME but it's starting to get better. Sometimes, I feel like a fraud because I look 'normal'. But I know I'm unlikely to ever recover and that's scary.
For those who resonate with my story, just know that it's possible to rebuild a life that works for you. It takes time, adjustments, and self-advocacy, but small changes can make a big difference.
Once you have grieved your old self, try to focus on what's still possible. Life might be very different, but it can still hold purpose, joy, and connection. Living with ME has taken so much from me, but it's also taught me to truly listen to my body and fight for my needs.