Friday, 8 August 2014

Stop the ME cover up.


August 8th is Severe ME Day, and as a sufferer of severe ME, it is another opportunity for me to raise awareness of this debilitating and life-changing disease.  Not enough is being done to help understand and combat this illness. There is precious little funding or research, no cure or treatment, and many thousands are left to deal with what is essentially a living death with little to no help or advice from the medical profession. Many are given bad advice which ultimately does even more damage. This is my own experience - by pushing myself and trying to carry on as normal for the first year and a half of my illness, I have now been left housebound. It has taken the same amount of time to claw my way back to some semblance of a life. I am just starting to be able to cope with visitors and am slowly making my way through the list of people I have been too ill to see for well over a year. This includes my brother, my small nephews (who aren't quite as small as when I last saw them) as well as close friends and their young children. 

The last few years have been tough for me and my family but we have learned to cope and enjoy the positives in life. I count myself as lucky because I have not had to deal with the disbelief and abuse many other sufferers experience. I am in the minority. There is so much bad press surrounding ME that many refuse to believe it is a real illness. Many are accused of 'faking it' or just being depressed. There are countless stories of seriously ill people being told they 'just need to get out more, get some fresh air' or that old chestnut of 'pushing through' the pain and fatigue. Let me tell you categorically that 'pushing through' is the very worst you can do. 

People with ME need rest, time, love, support and understanding. They need doctors who take them seriously. They need family members who don't constantly accuse them of lying. They need research into this terrible illness and they need a cure. The physical symptoms alone I wouldn't wish on my worst enemy. When you factor in the isolation and stigma felt by sufferers as well, then the plight of people with ME is elevated to one of the most shocking and unbelievable cases of mass neglect and denial.

I want to get well. I want my life back. I want my family to not have to worry about me. I want my husband to not be burdened by constantly having to care for me. Most of all, I just want the world to understand the truth about Severe ME and STOP the ME cover up.

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