New members of the club no-one wants to join

Hi I’m Anna, I’m 31 and in September 2010 I got a virus and I never got better. I was diagnosed with ME/CFS not long after. It’s been a completely life changing experience.

My life goals are now along the lines of wanting to get to the point of being able to shower daily, to taste fresh air frequently, and to build upon my already exceptional collection of pyjamas, slippers and bedding. I mean look at these Bobby dazzlers!

In 2013 I started the tea party for M.E. (nicknamed ‘Blue Sunday’) a small-fry fundraising event that means an awful lot to me and many others. When so little else is accessible to us, the virtual and real life tea parties have raised over £20,000 for M.E. charities and connected us with people going through the exact same thing we are.

I wanted to send solidarity to everyone who finds themselves here as a result of ending up in the ‘post viral syndrome’ boat this year. And I’m sending support to all those who’ve been there already, and who are feeling a whole mix of emotions surrounding this years events. There are too many of us who can relate, sympathise and understand, but in truth this year is incredibly complex for us on so many levels.

I’m never sure I’m the best person for newly diagnosed members of the M.E. community to speak to. Because I’m not better or anywhere near full health. And I know from experience that it is hard to be exposed to ‘Old Timers’ in the early days of your own illness.

With regards to supporting those who are new to the M.E. diagnosis, I hope that all I can do is offer them the hope that life can still be good.

Life will be very different but it can be so good.

And even though I’m still affected in the ways I’m affected, I’ve made so much progress. Progress in ways we never even dared to even think about. For now we’ll brush over my current relapse shall we…

Newcomers are often not ready to hear what I have to say, which is ultimately “Grieve and Accept, knowing that those things will interchange repeatedly”. I can understand that that’s not what one wants to hear.

I remember how it felt to speak to people years in to their own M.E. journey after my neurologist implied I’d only be ill for a short while longer. And it didn’t feel good.

Newcomers want, as I did, a quick fix. Simple steps they can take to reach their goal of regaining their health and becoming their old ‘true’ self. There is no quick fix or magic pill. Kick, scream, throw your toys out of the pram. Do whatever you have to do to come to terms with that fact. But realising there is no easy way out is something we all must come to terms with.

‘Recovery’ and progress (or perhaps more accurately this ideal of Recovery) is, to me at least, about moulding a life around your new limitations.

My suggestions?

• Rest. You might think you are but I don’t mean reclining with your feet up while watching Netflix. I mean true and proper rest with as little stimulus as possible. No reading. No music. No television. No conversation. Cognitive rest. It can be a game changer but it takes far longer than any of us would like it to, to see the results.
• Accept. I was incredibly sure of myself and believed I had reached that sought after thing. But I know now that it comes in levels and stages and that it fluctuates constantly. Feel the frustration but then let it go.
• Mould your life around your limitations. Prioritise the things that bring you most joy. But know that this is not always possible and anyone who tells you to do this without adding a disclaimer about Privilege isn’t being realistic or fair on you.

I don’t feel quite so at peace with all this every day. It comes and goes, and it will for sufferers old and new.

I never want to come across in the way that the people that I shared the CFS/ME clinic sessions with did. They were very different to me. In age and severity. But the biggest difference was that even only a few months in, I was able to start the process of accepting my new restrictions (I believe in part because I was just so unwell that I could do little else but lay in bed) and they, for their own reasons, hadn’t been able to do that. It was very hard to experience their resentment and anger at their own health. Sometimes you might need to shield yourselves from others who are having a hard time with their health.

But while we’re here, you should know that what Old Timers like me are feeling this year is quite complex. Please know that that is not your fault. It’s just hard for us, on multiple levels. Because while the whole world is aware of you and rallying to help alleviate your suffering, they haven’t wanted anything to do with us. Other than to gaslight us, prescribe treatments that have done irreparably damage to our bodies, and spread mistruths in the mainstream media. And then there’s lockdown, which we’ve had to live in for years and years and years, while everyone else cracked on with their lives.

It’s hard to see you suffering. Devastating actually. And it naturally takes us back to the early days of our own illness. So like I say, it’s complex.

You’re so welcome here. There is a wonderful chronic illness community full of people whose lives have taken unexpected and unpleasant turns. So many of us are wanting to help in any way we can.

We couldn’t be saved. But we hope you will be.