The 8th of August was international severe M.E. awareness day. I’m a bit late to the party, owing to a two day hormone-induced migraine, but better late than never. This year, severe ME sufferers have been sharing selfies to show what it’s like to live with this devastating disease. Thankfully I’m no longer severely affected, so my selfie comes from the year 2000:
I have a personal Facebook page on which I don’t discuss my diseases. I am not my illnesses and sometimes I just want a social place where I can be like everyone else, so I choose FB for that. But for some reason I can’t work out this year I decided to share a post to all my ‘friends’ about severe ME and the impact it had on my life.
I said I’d been virtually bedridden with severe ME for nearly 10 years. How I lived alone. Without care. Without medical help or intervention. I lay in my bed, on my own, for 23 hours out of every 24 for six years. My only visitors were my parents. I didn’t receive a single get well card. My healthy friends and family forgot about me. Which is all absolutely true. I’m sick of pretending it didn’t happen because it makes the people I know uncomfortable.
The only people who commented on my post were my wonderful, supportive, generous, caring, understanding sick friends – most of whom I’ve never met in person. Only one of my healthy friends commented and that’s because he fancies me and wants to date me (he would not have wanted to date me when I was bedridden). None of my family members commented, apart from one cousin who said “what were we supposed to do if we didn’t know! No-one told us”. This comment was followed up by a text message, basically saying the same thing. Which I ignored.
My entire extended family, which btw is enormous, knew I was sick. My aunts and uncles all came to see me now and again over the years for which I am hugely grateful. Some of my cousins may not have known the full extent of my illness, but if they’d bothered to pick up the phone to ring me and ask how I was they would have had more of an inkling. But none of them did.
I’m amazed the cousin in question didn’t know how sick I was. Her sister knew, because she’s since apologized to me for not bothering with me and said she feels really guilty about it. Not so guilty she’s bothered to visit me once in the 11 years since I was severely affected but hey ho. Her parents knew. Her Mum came to see me when I was in hospital for 3 weeks. She also leant me her caravan to stay in when I went for treatment at a private clinic down south for two weeks. And when my parents were on holiday, and I’d found myself passed out (yet again) on the bathroom floor, I asked her if she’d ring me every day just to check I was still alive until my parents got home. Which she did. I’m amazed none of this was discussed with her daughter to whom she was very close.
Where did my cousin think I was on the day our Nanna was cremated? Because I wasn’t walking behind the coffin with all my other cousins. And I wasn’t at the crematorium. Where did she think I was at all the family gatherings for 10 years?
The truth is she absolutely must have known I was ill, but has chosen to suppress the knowledge. That way she didn’t have to do anything about it. She’d deny that of course.
I’m still ill. She only lives in the next village and regularly sees me on my mobility scooter, yet never comes to see me even though she has to drive past my door every single day to get home. Yet she is upset I’ve said my family ignored me. People are strange and my family seems more strange than most.
I got over the hurt of being ignored a long time ago. I haven’t forgotten it, but I no longer sit and stew over it or cry about it. Neither do I make any effort whatsoever to keep in contact with any of my family members or will I ever. As far as I’m concerned my family consists of the Three Musketeers: my dog, my Mum and my Step-Dad and that’s all I need.