Millions Missing: Zoë’s Story

I fell ill overnight in December 2015 at the age of 24. Before this, I had recently been promoted and was doing very well in my career as a Marketing Analyst. I was also incredibly active and taking part in several evening classes including French, aerial acrobatics and choir. I would cycle to and from work every day, I was running half marathons and I would walk everywhere. 

Since falling ill I’ve had to stop work, I am rarely able to leave the house, and I now use a wheelchair. My house has become both my prison and my sanctuary. I feel trapped behind four walls, which I am rarely able to leave, but when I do go out I am left exhausted and it takes me weeks to recover. I feel incredibly isolated from society. I spend much of my day on my own, and the only people I usually see are my partner and the postman! 

My pre-illness life feels like a dream, or perhaps my current life is a nightmare that I can’t wake from. I still remember what it felt like to be well, but I haven’t had a single day of feeling well since that morning I woke up in 2015 and my life drastically changed. A lot of people don’t understand my illness, or even believe it exists. I think it makes people uncomfortable to know that someone can be so ill for so long. 

It took until the end of September 2016 for me to be diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The period leading up to my diagnosis was of frequent visits to see doctors, lots of tests that came back normal, and the horrible anxiety of knowing that there is something very wrong with me, but not knowing what. Eventually receiving my diagnosis changed little for me, however, other than having a name to give to my mysterious symptoms. There is currently no effective treatment or cure for ME, and the healthcare I have been given has been thoroughly disappointing. 

Many GPs and other doctors have no idea what to do with ME patients, and some prescribe treatments that can actually be harmful, such as graded exercise therapy. Whilst in Bristol we are fortunate to have an NHS ME/CFS clinic, the treatment is centered around cognitive behavioral therapy and physical therapy, which can help some people but it can make little difference to, or actually worsen the condition of some. For me personally, it has not helped me to get any healthier. I feel abandoned and ignored by the NHS, and this has forced me to explore expensive private treatments in my desperation to find health. 

I am hoping that if we can raise awareness of this cruel illness, we can push forward the agenda to get better research that could lead to more timely and accurate diagnosis, an effective treatment, and possibly even a cure. This illness steals the lives of many, and I am desperate to feel like a normal 20-something again.