M.E. is a debilitating illness yet often sufferers find themselves being called liars. No one believes someone could have all the symptoms M.E. can cause and there be no treatment for it. It is an illness that baffles the medical profession too. Society is faced with a debilitating illness that no one knows much about, and so people don’t want to believe it is real. Instead sufferers are faced with being told, among many other things, that it’s all in their head, they just need to get out more, they should exercise more, they’re doing it for attention, told that it must be nice to be able to stay in bed all day and not to have to work.
No one wants to believe M.E. is real. That one person could suffer so many debilitating symptoms for so long with no real medical help is a terrible thought. Yet to not be believed because the amount of symptoms suffered and the debilitation caused is heartbreaking for many. Do you really believe anyone would want to live a life like this? To struggle to sit up without coming close to fainting? To have to rely on others to help shower and dress you? To spend most of your time inside, unable to cope with more than one visitor at a time?
If you really believe someone would want to live a life like this then I feel sorry for you, I really do. Living this life is not the picnic you obviously believe it to be. I wouldn’t wish what I suffer on a daily basis on anyone, but I need to be honest with you. This life is hard. Not having the energy to do the things you love. Not being able to do the most basic task, while watching other people complete it for you with ease. Not seeing your friends for months on end because you’re simply to ill. Watching everyone else your age going out and getting on with their lives, while you just lie there waiting to see if you’ll ever be able to do what they do. To be in so much pain you can’t sleep, but knowing that not getting any sleep will only serve to make the pain even worse.
There is very little the medical profession can do for people with M.E. Some treat the symptoms, as they can’t treat the illness as a whole without knowing the cause. Some recommend exercise which often makes the person suffer even worse symptoms. Some medical professionals refuse to believe that M.E. exists. To find a cure, or even just a treatment we need biomedical research into the cause, research that is not readily forthcoming.
No this life is not a picnic. It isn’t one anyone would choose to have. And I’ve only highlighted a few aspects of it in this post. Because of the stigma attached to having an illness such as M.E. and the way it is perceived both by the general public and unfortunately by some in the medical profession, being honest about the true extent of what you go through can be incredibly difficult. When posting anything this honest you have to be prepared to get unhelpful comments, suggestions that it’s all in your mind, things I’ve already mentioned in this post and so much more.
But without people being open and honest about what they go through on a day-to-day basis how are things ever going to change? This is why one week a year I bombard my social media pages and often this very blog with posts about M.E. You see there is one week in May dedicated to raising awareness of this debilitating illness. And I for one always do my very best to make the most of that week, getting as much information as possible out there for everyone to see. I hope this year some of you shall join me, either by creating your own posts or by sharing some of the ones you see on social media sites. And of course by wearing a blue ribbon or anything blue on May 12th for ME Awareness Day; if anyone asks about that blue item do your best to explain it’s to raise awareness of a debilitating neurological illness called M.E.
We’re not expecting miracles but a little bit of understanding, education and awareness goes a long way. So if you get sick of seeing the M.E. Awareness posts during that week in May, stop for a minute and think, really think about how it must feel to be having to post things like that in order to raise awareness so people actually begin to believe just how unwell you actually are. To be spending your precious energy on trying to educate people on the struggle you face on a daily basis, when this means giving up doing something you’d really enjoy doing that day because you simply don’t have the energy to do both. This is not the life anyone would willingly choose to live. Remember that.