Dee’s story

I have lived with chronic fatigue since childhood. Alongside trying to navigate a capitalist society which encourages us to push through illnesses and discourages rest, this was a disaster for my body. After years of chronic pain and debilitating fatigue, I would eventually be diagnosed with ME and fibromyalgia, having spent years struggling with chronic asthma, endometriosis, and adenomyosis.

I try not to live with regret, or wonder what could have been, but when I look back across my health challenges there is a lot of frustration over the missed opportunities to intervene and potentially prevent my health being as poor as it is now.

The first time I visited my GP about my symptoms, I was diagnosed with anxiety and depression and prescribed anti-depressants. Years later, another GP would tell me I was ‘very stressed’ and instructed me to clench my hands to make fists and release repeatedly, before asking “better?”. I have to battle for reasonable adjustments and online appointments in most areas of my healthcare; there is no understanding of how leaving the house for face-to-face appointments can make us much more poorly.

I am angry and fearful that healthcare for people with ME is still so lacking.

There is a real lack of awareness and understanding among all areas of society – it’s systemic. I hoped that many lessons would be learned as a result of the Covid-19 pandemic, which has caused so many more people to develop ME and / or Long Covid. Unfortunately we don’t seem to have learned, and instead there’s a rush to ‘get back to normal’, which will harm many more.

I am often treated as though I am being lazy and don’t want to be well, especially if I refuse ‘treatments’ such as graded exercise therapy. I used to live a very full and active life. I worked full-time in Marketing and PR which I loved. I grew to love exercise in adulthood, visiting the gym often and playing roller derby, and I enjoyed going on bike rides with my husband. We volunteered at our local rescue walking the dogs. I loved cooking meals, reading and writing. My spare time would be filled with seeing family and friends. I now work 15 hours a week for FTWW and spend the vast majority of my free time in bed, resting.

I haven’t been able to read a book in over a year and have so far been unable to finish the novel I began writing as part of my Creative Writing MA.

I am proud to be disabled and am lucky to live a generally happy life, but – like so many others – I would do anything to be well. I’m at the point where I’ve exhausted my options.

I and thousands like me in Wales now need the Government and NHS to step up and ensure we have equitable access to appropriate healthcare.