'M.E. myself and I' by Anna Redshaw

The whole truth

I got very poorly after Blue Sunday this year. I’d thought nervous breakdowns were of the Victorian era where you’d be prescribed a dose of sea air. But apparently anyone can have one. And I did.

I am still recovering from it.

It was just such a lot. And it would be for someone without a poorly body.

I have always been very, very lucky with the level of support I have received online.

But this year the critics were louder. There were judgements and assumptions from the chronic illness/disability community for not doing more. And then judgements and assumptions from those from outside the community for doing anything at all. (Having such a huge donation target contributed massively to the overwhelm.)

Since then I have thinking a lot about how many of our best advocates have had to bow out of advocacy because similar feelings. I started advocating for people with M.E., in the ways that I can, in 2011 and have watched countless others decide it is an impossible balance to find and maintain. They step away from a cause they feel so incredibly strongly about because the load is too much to bear.

I think most of us now expect people from outside of M.E. to a) not understand, and/or b) not care. But what about the misunderstanding, criticism and ‘feedback’ that comes from within the community?

I’m just a bit worn down by it I guess. 12 years of advocacy and I’m unsure what my future within it looks like. I’ve signed countless petitions, my husband has met with our MP, I’ve challenged Doctors and nurses, spoken up to anyone I meet who believes the media coverage about M.E. being a mind over matter issue where people are just a bit tired.

Blue Sunday will happen next year but my priority, more so than ever before, will be my own sanity and my own health.

A reminder that there are people with feelings behind social media accounts, who read the things you say about them and their efforts. We are one of the most desperate-for-progress communities, but derailing the efforts of your allies is a sure fire way of losing them from the cause.

With love from a poorly person doing their best to give people like her something to look forward to in the year.