From Anna Jones
I know we cannot expect people to understand if we aren’t honest with them. So I’m being honest with you. For now it’s down to us sufferers to raise awareness. So here I am. It can be hard to put yourself out there like this but I’m happy to do it on behalf of my fellow sufferers. I know some of you share my blog or other blogs rather than writings their own. I’m happy to be your voice. Honoured even.
M.E. awareness is important because, quite frankly, I do not want anymore people to be met with such ignorant and inadequate medical care. I’m not sure how much more we can take. We battle every second of every day against this illness but we do it alone because no one really understands.
The stigma and misunderstanding are hugely hurtful and have such a detrimental effect. The medical world is baffled by us but instead of trying to get to the bottom of this mystery illness, the majority just brush us aside or try to pacify us with harmful GET (graded exercise therapy.) There are cures for a whole host of diseases in this day and age and yet we remain so far from the forefront of the medical world’s mind that to them we really don’t exist. They will not let us donate blood and yet still sometimes disregard our illness as ‘all in the mind.’ Explain that. Such confusion and contradiction messes up our lives. This isn’t a game. This is serious. And we are desperate. We want a cure. We want our lives back. And we want to be taken seriously.
Other sufferers are currently pushing for awareness because they don’t want other people to suffer for ignoring their bodies, like they themselves were advised to do by ill-informed medical professionals. You can make M.E. much worse by doing that you see. But I didn’t push through. I quickly (within a matter of weeks) learnt that Body knew best. I stopped. I listened. Where did it get me though? This is why we desperately need not only awareness, but proper research, proper treatment, proper care, proper medical advice, and not just psychological coping mechanisms…
“But everyone gets tired!” Your words are hurtful and harmful. Think before you speak. And shame on those who knew me as a person before The M.E. Years. Do you honestly, HONESTLY think that fit and active young woman would settle for a life confined to her bed or house, living off the state? Honestly? No. So think before you speak.
“At least you don’t have x y or z…” People can die from M.E. too you know. Our bodies take a huge battering and cannot fight diseases like they could when we were healthy.
So yes I might be shoving it in your face this week but as irritating as that may be for you, it’s nothing on the frustration we feel as ME sufferers.
So read the blog posts that crop on twitter. Wear a blue ribbon throughout May, or all year round! Visit the ME Association website or Invest in ME. Support your friend who battles everyday by posting a photo of the two of you on social media with the hashtag #meawareness. Challenge people who disregard sufferers as not trying hard enough to get better. Share the facebook statuses that have helped you understand a little of what M.E. is. And avoid the Daily Mail…
Please. This is vital. This is real. Nobody should be this ill and have to fight to prove it. Why would we make it up?! Why would I pretend that I can’t make it to the bathroom on time because my legs are too weak to carry me? Why would I pretend I need to be spoon fed I my mid-twenties? Why would I pass up the opportunity to spend time with the people I love the most? I don’t really understand how some people can think that. But then why wouldn’t they think that if society assumes we’re “just tired.” This is why we need change. And we need it fast! There is the danger that I will become very bitter and twisted and that’s such a shame. I’m not that person. Please don’t let that happen…”
M.E. myself and I http://lifeintheslowlanewithme.blogspot.co.uk
Thanks for your post Anna!
If anyone else would like to contribute please send me a comment or email – I would love to hear from you!