Thursday 10 May 2018

GUEST POST by Anne for M.E. Awareness Week - 'Stigma'

I am developing quite a large chip on my shoulder and it is all your fault. Well society’s fault really but let’s not waste time splitting hairs. If I was reading this out loud I might get a bit ‘shouty’. 
If I didn’t have the ‘M.E. label’ medical professionals would surely be at least starting to think that my health might not be the best after three years of suffering and stalemate? 

M.E. sufferers have such a bad name. 

The symptoms are horrific but the stigma is almost worse. It feels like trying to convince someone that your hair is blonde when they’re telling you it’s actually black. You even start to doubt yourself despite being able to see in the mirror that your hair really is blonde like you’re telling everyone. 

Sometimes I feel ashamed to be an M.E. sufferer. I think a lot of us do, and all because of the stigma. But the ones who should feel ashamed are the doubters; the ones who don’t even try to understand; the ones who don’t believe you or trust that you’re telling the truth. They are the ones who should be ashamed. 

To them I say this:

  • You don’t see me when I am too weak to lift my head up. 
  • You don’t see me when my legs shake and my knees threaten to buckle for no other reason than I have walked downstairs. 
  • You don’t see me when I have to clutch the back of my head to try to stop the ‘itchiness’ underneath my scalp. 
  • You don’t see me when I struggle to chew food because my jaw isn’t strong enough. 
  • You don’t see me battling the after effects of even five minutes out of the house.
  • You don’t see me and the heartbreak me and family face everyday because of this illness. 
  • You don’t see the changes in my family dynamics. 
  • You don’t see my Mum spending hours filling in benefits forms trying to prove just how poorly I really am. 
  • You don’t see her trying to put this ‘plague’ into words. How can you describe such awfulness coherently? 
  • You don’t see my dad having to give me what can only be described as an ‘air hug’ because to give me a real hug is too exhausting and painful for me.
  • You don’t see my brothers struggle to find the words to comfort me when I am stuck in bed and having to cancel yet another outing with my friends. 
  • You don’t see the look on my sister’s face when she walks into the room to see my limp, weak body laying on the sofa barely able to sit up. 
  • You don’t see the frustration and sadness on their faces when they ask me if I want to do something only to hear that I am once again not able to.
  • You don’t hear the wobble in my grandad’s voice when he tells me all he needs to be happy before he dies is for me to be better.
  • You don’t see my heart sink when I hear him say it everytime I see him.
  • You don’t see the upset I face when having to visit my GP surgery. 
  • You don’t see me fighting back the tears when I am told by these medical professionals that it ‘really is time to snap out of it now, if not for [me] then for [my] family’. 
  • You don’t see how bad that makes me feel; to be accused of ‘milking it’ when I would do anything, give anything, to be healthy again. 

If you know my family and you are reading this, I almost hope that you feel a bit ashamed of yourself. When was the last time you asked my family how they were coping in all of this? 

Please do me a favour and ask my parents or my brothers and sister if they’re okay. 
Simple as that! M.E. has not only affected me but them too. Maybe even more so. Come out of the woodwork and look after them like you did when another family friend was seriously ill with leukaemia. Illness is illness whether it’s cancer or MS or chronic pain…or M.E. Who are you to decide whether one is worse than the other? My family have been suffering for three years. Three years of watching their daughter and sister struggle to walk and eat and move and speak and function. And all without being taken seriously by the medical world. Imagine that for a second. Imagine if this was your daughter/sister…

Spare a thought for the sufferers and their families who have endured many more years of illness and stigma than me and my family have. 

Don’t you dare judge us M.E. sufferers. If you don’t or can’t understand then fair enough. It is so complex that even we sufferers struggle to get our heads around it. But don’t you dare judge us or smear our name and our illness with rumours and presumptions. 

If someone asks you “What is M.E?” and you don’t know how to answer, that’s fine! Just don’t make something up. Just be honest and say you don’t know.

“All I know is that my friend is very ill with it” would be a much better response than pulling something out of thin air. 

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