The M.E. community were shocked and saddened to hear of the death of M.E. warrior Jennifer Chittick yesterday (24th May 2019). Jenni had endured severe M.E. for a decade, was bedridden and reliant on her parents for care. We don’t know the cause of death, but to lose your life aged just 31 is absolutely tragic and my heart goes out to her family and friends.
Just a day before she died Jenni had been the subject of an excellent article in the Daily Mail newspaper on the abuse and neglect faced by M.E. patients. Her story echoed mine and her tragedy could so very easily have been mine.
I became severely affected by M.E. aged 26. I lived alone and was told by my GP “we don’t have enough home care workers for people with cancer so you stand no chance” and I was just left to look after myself, despite the fact I once spent 4 months barely able to open my eyelids. For 6 years I crawled to the loo on my hands and knees and never cleaned my teeth. My Mum made a meal for me every day, after working full time, and my Dad drove across town with it in the car on a tray for me – it’s the only nutrition I had other than cereal and the odd smoothie.
At one stage I was so ill I simply couldn’t manage any longer at home alone. My GP arranged for me to be admitted for respite care to the neurological rehab wing of my local hospital. There were no doctors there and I was mostly looked after by physios – this was a ‘rehab’ ward after all! I didn’t know then that I had Ehlers-Danlos syndrome, and I was told it was brilliant I was so flexible! I had huge problems eating solid foods, not least due to oesophageal spasms (now known to be due to mast cell disease) and gastroparesis (now known to be due to hEDS), so the psychiatrist was sent for and she told me I had anorexia, despite the fact I was starving, wanted to eat but was just too ill to. I had a seizure in the presence of a nurse one day and she didn’t touch me or send for a doctor …………I’m sure if I looked at my notes it would have some psychological explanation, even though I couldn’t move my entire right side for a whole day afterwards. I was given no help with bathing, despite the fact it was one of the things I struggled the most with. In the end, after 3 weeks of zero help and disbelief, and being looked after by a girl who used to bully me at school, I discharged myself and went back to living at home alone. It was pure luck I survived the next decade, both physically and mentally.
My experience happened back in the late 1990s/early 2000s. It makes me furious that the situation hasn’t improved in the intervening two decades. Just because a cause hasn’t yet been found for the disease shouldn’t mean we are treated as subhuman or denied basic care and compassion. The denial of M.E. as a physical disease, and the neglect and abuse of patients, will eventually be uncovered as one of the biggest scandals of modern times.