Bristol healthcare worker shares personal battle to mark World ME Day

A Bristol healthcare worker is speaking out about the realities of living with Myalgic Encephalomyelitis (ME) to help raise awareness of the often misunderstood condition for World ME Day.

Megan, a Ward Clerk at Cygnet Health Care’s Cygnet Brunel hospital, on Crow Lane in Henbury, hopes sharing her story will encourage greater understanding and compassion for people living with invisible disabilities.

World ME Day is observed annually on 12 May to raise awareness of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a complex neurological condition that affects hundreds of thousands of people across the UK.

ME/CFS is a serious, long-term physical illness affecting multiple systems within the body, particularly the neurological and immune systems. Symptoms can include debilitating fatigue, post-exertional malaise (PEM), unrefreshing sleep, cognitive difficulties often described as “brain fog”, chronic pain, digestive problems and heightened sensitivity to light, sound and temperature.

The condition is recognised under the Equality Act 2010 as a long-term fluctuating neurological disability, yet many people living with ME say they still face stigma and disbelief because symptoms are often invisible.

Megan said: “One of the biggest challenges of living with ME/CFS is misunderstanding. When I tell people I have Chronic Fatigue Syndrome, I’ve often heard responses like ‘everyone is tired’. This minimises a condition that goes far beyond everyday fatigue.”

She explained she had struggled with exhaustion and poor health since puberty, often being referred to mental health services or told her symptoms were linked to low iron levels or hormonal changes.

“It became almost normal for me to experience low mood and reduced energy,” she said. “I became used to it and feared talking to doctors because I often felt dismissed.”

“When I turned 23, it got much worse. I couldn’t function. It felt like my body was actively working against me, and I suffered a massive decline in my mental health.”

Megan described experiencing overwhelming daily pain, worsening fatigue and periods of severe anxiety and depression before finally being referred to the Bristol ME Service.

“After over ten years of poor physical and mental health and a continuous battle with GP and specialist services, it only took around 30 minutes for the assessor to officially diagnose me with CFS,” she said.

“Part of me was relieved to finally have answers, but another part was angry for the young girl who had been repeatedly fobbed off and told it was ‘all in her head’.”

There is currently no cure for ME/CFS, with treatment focused on symptom management, preventing deterioration and helping people adapt to daily life with the condition.

Megan says one of the hardest aspects of living with ME is its unpredictability.

“One day I may feel relatively fine, but the next I may not be able to lift my head from the pillow,” she explained.

“What has helped most is surrounding myself with people who understand my limitations and don’t judge my fluctuating energy levels. I’m still learning what works for me, but support and patience from others has been crucial.”

By sharing her experiences publicly, Megan hopes to challenge misconceptions and encourage more open conversations around invisible disabilities and chronic illness.

“My health conditions do not define me,” she said. “They may limit my everyday functioning, but they will not dictate the rest of my life.

“Speaking openly about ME is something I choose to do not just for myself, but for others who may still be struggling to be believed.

“For World ME Day, I ask people to take just five minutes to learn about ME/CFS. Greater awareness leads to compassion, improved support and earlier understanding for those living with this often invisible disability.”

Cygnet Brunel is a 32-bed specialist neuropsychiatric rehabilitation service, part of Cygnet Health Care, supporting men with acquired brain injuries and neurodegenerative conditions.