It’s the big day in M.E Awareness Week and, as promised, I am going to publish a video of me answering your questions about living with the disease. So without further ado; we have a question from Bre-Am (I apologise so badly if I’ve pronounced that wrong).
Bre-Am has asked me if I appreciate it when people offer me help or if they’re only doing it to show off to others.
I think if someone sees me struggling, I can’t open a door, I can’t reach something, or they just think I might need some help, and they come and ask, it’s always appreciated. Now, I might say to them “yes, actually, I would appreciate some help,” at this point, or I might say to them “no, thank you, I’m OK.”
It’s OK to say no, and it’s OK to want to be independent. If you ask someone disabled if they want help and they say no, that is OK. Just say “OK, no worries, I’m here if you need anything,” and walk away; there’s no shame in that.
Obviously asking for help I am never going to take offence to; someone’s trying to be nice, and if I say I want help and they do help, then that’s brilliant. The important thing is to always ask first.
Now, my personal experience is that I’ve not had many people do this to show off to others. Very occasionally you’ll get a charity representative in a middle of a shopping centre who might try and be seen to be inclusive with the disabled person, to be seen as a better charity representative.
Other than that, very few people do it to show off; the biggest problem is actually someone asking if I need help and continuing even after saying no, or just barging in without asking in the first place. It’s my personal space, it’s my equipment; the wheelchair is an extension of my body; do not push yourselves on me unless I ask for help.
But, you know, the offer is always appreciated.
And then we have a question from Sophie, who has been a friend for a long time after we met on forum for people with CFS. She has asked me how my experience of CFS compares to that of others.
I think there are some central aspects to this disease which, like every person with this disease on the planet, I have experienced. That is things like the fatigue, pain, headaches, dizziness, itchy eyes, and poor short term memory and concentration. I think also that the general disbelief in the condition that I have encountered is pretty universal.
But, my experience does differ in things like I went to a GP who believed in CFS and I was diagnosed within 12 months of becoming ill, and I got access to painkillers, physiotherapy, and counselling. That is really, really good; some doctors don’t believe in the condition and refuse to have anything to do with it and they won’t diagnose or treat it at all, and people end up going from GP to GP. So I was very lucky in that respect.
I think CFS varies in severity; some people are house bound or bed bound, and for them the wheelchair to go outside in would be useless. They don’t have the energy to even do that. For me, the powered wheelchair has enabled me to be independent, get an education, get a job, and live a relatively normal life, and again I’m very lucky in that respect.
And I think the other big thing that separates people with this illness is actually experiences with social services, and this particularly applies to children.
When I was a teenager someone anonymously reported my parents to social services, claiming that they were using me as a sort of disability benefit fraud, that they were forcing me to be in a wheelchair for the attention and financial support. Social services barely looked into it before dropping the case; they said it was ridiculous, but that mark is still against my parents name and they’ve never been allowed to defend themselves. That is still quite a sore point for us because on their record there is a complaint against my parents that will always be there, however wrong and invalid that complaint is.
Some people never experience that, and they never experience how devastating and how heart-breaking that is; to be the child in that situation, to be the one who is getting their parents into trouble for being sick. It’s awful.
But, again, I’m quite lucky. There are people who get separated from their families and put into institutions, and other cases that go to court; these are not rare, I know people who have been through this.
If you see the Millions Missing movement on social media, particularly Twitter, that’s what it’s all about. It’s talking about the people who get removed from their families because people don’t believe in their illness and think that their parents are psychologically abusing them. So there’s a big movement at the minute to get CFS recognised as an actual illness, and to stop social services marching in and pulling families apart, which only tends to make the illness worse, and it’s sheer madness.
Now that’s it for all the questions I’ve had about living with CFS, and I’m going to take it that my blog is so good and so well-explained, that no one has any more questions about the disease. I hope these answers have been good, but if you have any more questions feel free to ask; I’m happy to message or make another video.
So, please, please, please keep a lookout for tomorrow’s blog post, which is all about the ridiculous theories people have about M.E, what causes it, and how to treat it. It is hilarious.
Also, don’t forget, do donate. 25% of this week’s donations are going to the M.E Association, so not only do you support my writing career, but also a charity who support people like me.
So please, please, please; donate, like, subscribe.