All my diseases have a spectrum. There are those with mild symptoms who carry on a relatively normal life and those who are wheelchair, house or bed bound and need help with the basic tasks of everyday living. On top of that chronic diseases can change – you can start off in one camp and end up in another. My M.E. started off moderate, I had travel vaccinations which led to me becoming very severe, then gradually over many years I made it back to moderate again. In respect of my EDS I had few problems, apart from my back which started hurting as a child, until I was 40. And I had no bothersome MCAD symptoms until I was 30 and all hell didn’t break loose until I was 44.
The severe end of the spectrum of my diseases is woefully under-represented, M.E. in particular. Severely affected people are too ill to participate in life, and the Carers of severely affected people are too exhausted from their caring duties, so you won’t see either of them represented on the boards of Charities. Charities tend to be run by people with milder forms of diseases and their illness experience tends to reflect the way the Charity is focused. The ME Association, for example, in the early days of my disease hardly ever mentioned severely affected people. It’s only when Neil Riley, who is himself more severely affected, took over as Chairman that this changed. And these days I often struggle to read the posts of EDS UK and the HMSA, with their relentless positivity and endless photos of fun runs which bears absolutely no relation to my illness experience.
Chronic illness also changes as you age and older people again aren’t well represented on the boards of Charities. As a child and young adult being hypermobile was a positive boon. I was unusually strong for a girl and my body was lithe and supple. I did aerobics, I danced, I lifted weights, I cycled to work and back. Fast forward to middle age and I literally struggle to get out of bed in a morning (more on this in my next blog post).
Health care for severely affected people is dire. If you can’t do physiotherapy/pilates my experience has been that you’re simply left to rot – even the specialist EDS unit in London won’t accept you if you’re not up to a 2 week in-patient physio course. Bedridden M.E. patients receive virtually no care. There are no inpatient M.E. beds for severely affected people in the entire country and it’s not like Consultants do home visits. So, paradoxically, the more sick you are the less health care you receive.
This is in direct contrast to other chronic diseases. My Mum has severe and chronic heart and lung disease, but she attends a 6 monthly heart clinic and a 6 monthly lung clinic and we have specialist nurses on speed dial. And so far my Dad’s dementia care has been excellent, with a specialist Psychiatrist and a lovely specialist nurse who we can ring with any questions or concerns. There is no cure for either my Mum or my Dad, just as there is no cure for me – the difference is their diseases are monitored and managed while mine are simply ignored.
In my younger days I tried to change the situation. When the Government announced the setting up of M.E. Clinics around the country I volunteered as a patient representative for the severely affected. It was a waste of time and my input was ignored completely. These days I simply don’t have the energy or emotional resources to even try to tackle the problem – I’m too exhausted just trying to get through the day, to eat, to bathe, to run my home and to take care of my parents. And there you have it: the more ill you are, the less you are able to participate and the more invisible you become.