Monday, 8 August 2011


I've been participating in surveys for The Office Of National Statistics over the last few months. I don't mind. I don't think I'm interesting, but I do like surveys! Last week the lady interviewing me told me that her niece had had M.E., and that she is now better. Knowing people with M.E. and knowing what families are like I'm guessing that she probably isn't completely better, that she is now working again and people around her are taking that to mean she has magically recovered. I hope she's coping ok whoever she is. During the interview the lady listed my health problems, at the end she said that I had a health problem listed as 'other' but she couldn't work out what it was. I said that was the M.E.. She said she had put that under the mental health section, so I explained to her that it isn't a mental illness, it is a neurological condition. I really don't understand how people can think M.E. is a mental illness.

It made me realise that quite probably the reason my parents refuse to acknowledge my illness, refuse to talk to me about it, and don't mention to any of their peers that I'm ill, is because they probably consider it to be a mental illness too. My real mother is mentally ill; they probably figure it runs in the family. 

So, on Friday I sent my step-mother a text message saying 'You know CFS is a neurological / immune condition, not a mental illness, right?'. I've not had a reply. I'm not really surprised to be honest. But that doesn't make it any the less hurtful.

When I started working with one of her artists, I had mentioned in an email to that artist that I'm ill and have to work within the confines of that illness. She responded saying she hadn't realised that I was the one with MS. I had the embarrassment of explaining that I was not actually the one with MS, that that is my sister, and that I have M.E.. Thankfully this artist is aware of M.E. and understands it quite well (she has Lupus herself). I was so embarrassed though. Not only at having been put in that position to start with, but also by the fact that it made it rather obvious that my own family don't consider me to be ill.

It also showed that when my sister was diagnosed with MS my step-mother did the 'woe is me' story to anyone and everyone she knew. I completely expected this. She's the sort of person who tells everyone what she is doing for other people all the time; my sister having MS would be perfect for this. The fact that she did not do this regarding me having M.E. shows that she really has no idea what M.E. is. Anyone who does understand M.E. would be very sympathetic. You'd think that having two sick daughters would get her even more sympathetic ears wouldn't you! 

As silly as it sounds, having someone who draws attention to herself in that manner would actually be very useful; she'd be educating people, whether they particularly wanted it or not, regarding M.E. as she poured her woes upon them. The fact is, obviously, that she did not look into M.E. at all when I was first ill. Again, this does not surprise me. As a teenager my bestfriends mother had M.E. (and sadly, still does); my parents always described her as being weird. A complete lack of empathy or understanding.

The thing that annoys me most about this though, is that if it were one of her own sons; my step-brothers, she would know all about it by now. She'd probably be volunteering in an advocacy group. She has full belief in her sons. They cannot put a step wrong. Me on the other hand; every single thing I do is wrong. They've always told me that I 'make up stories' (I have never ever done so). They still say this to me as an adult belittling things I say as if I were a child. I believe they think that M.E. is just a story, in my head.

I really want to hate my parents for their attitude, but there again I keep wanting to believe that they'll change.


  1. I have this, it popped out of nowhere, it DID NOT EXIST that I saw ten years ago and WHY IS IT the 'trouble maker' thinkers get this, no bond traders have CFS. It's a brilliant deterrent plan. I'm deterred.

  2. Xanadu .. not sure you'll actually see this, but if you do .. I'm confused as to what you're trying to say in your comment. You have CFS? You participate on surveys for the national office of statistics? Me no understandee :(