This is my latest column for the ME Association’s magazine ME Essential on life as a carer for someone with ME/CFS:
Three little words guaranteed to set your eyes rolling in your head or raise your hackles to the point that you feel your fists clenching and your teeth grinding.
No, not “cheque in post” – at least, not this time.It isn’t even the opening gambit of most door-to-door salespeople and canvassers these days: “What it is…”.
These other three words tend to surface whenever ME/CFS is mentioned in the media and sometimes when the term carer is bandied about.
You. Should. Just.
On their own they’re fine, but put together “You should just…” seemingly opens up the opportunity for complete strangers to start lecturing you about how you can cure yourself of all ME/CFS symptoms.
Also, on several occasions when blogging about my carer role or making some comment on Twitter, I get a flood of life coaches telling me how I can juggle everything more effectively by following their quick and easy plan. “You should just…” invest several hundred pounds and I can make you a better person/cure you.
So, how does this impact on me as a carer of someone with ME/CFS?
Partly I’m very protective of Rachel, so anything that upsets her – such as unsolicited and misguided advice from well-meaning (or is it self-serving?) strangers – upsets me. As Rachel’s cognitive abilities are not always great, it is often up to me to explain to her the reasons why she should ignore such advice.
And re-explain it over and over as she often struggles to process such information. It isn’t that she doesn’t know, rather her condition means the information does not always stay stored. I’ll never tire of reassuring Rachel, but I do resent being put in that position by strangers who do not have a clue about my wife, how her illness affects her and the wider disruption they cause.
There isn’t a one size fits all cure-all for her condition.
We just can’t walk in somewhere and pick a remedy off the shelf. It would be great if we could, but real life isn’t that straight-forward.
There is little point in explaining such consequences to the “You should just…” brigade. Ironically, they’re not very good at accepting advice.
In recent weeks there has been a bit of a resurgence of the “You should just…” brigade, along with the armchair experts who feel able to spout nonsense on issues they have little or no understanding of and who have little inclination to listen and learn. They tend to surface whenever there is a flurry of media coverage of ME/CFS.
Speaking as a journalist with more than 20 years experience, it pains me to say it but the “You should just…” brigade feed on lazy coverage. And for whatever reason (honestly, I don’t know why and I have tried to find an answer), ME/CFS does tend to encourage too many journalists to be far too lazy. The same factual errors get trotted out, the same unsubstantiated allegations get repeated, and the “You should just…” brigade enjoys riding the bandwagon.
Often it is the ME/CFS sufferer who is left hugely frustrated at the continuing lack of answers, understanding and awareness of a condition which affects so many thousands of people day in, day out. They’re trapped in a vicious circle of having to deal with the fall-out of lazy journalism and ignorant commentary – something which often exacerbates their condition.
And their carers are left feeling just as frustrated and helpless – unless, of course, they get to write a regular column and give vent to such feelings.
The lack of awareness, understanding and empathy that ME/CFS sufferers often experience is similar to that felt by carers. We are the forgotten heroes, although few actually want to know what we do to earn this title of “carer” and some simply do not understand there is a big difference to the unpaid role many of us undertake and the role of care assistant.
Ignorance is bliss, so the saying goes. Alas it seems that ignorance has become more of a collective, national characteristic in the last five, 10, 15, maybe even 20 years.
If it isn’t easily explained, if it cannot be neatly pigeonholed, then it is too hard to try to understand – although it doesn’t stop people expressing a misguided opinion or two.
So how do you tackle such lack of understanding?
“You should just…” Listen. Learn.