I’ll start off by admitting that I have lost my way a little bit with my advocacy over the past two years. In this blog, I’ll explain how and why I am trying hard to get back to where I was but as an improved newer version!
When I first started ME Foggy Dog in 2014, it was entirely supposed to be a year-long fundraising campaign with a side-line of awareness-raising. As I have said many times before, I had very little idea of what M.E was when I first became active within our community. I was 7 years into my ‘C.F.S’ journey in 2014 (later realised I met all M.E diagnostic criteria) but I could have written what I knew about the condition on the back of a stamp. My first ever ‘M.E awareness talk’ was very basic and I cringe when I watch it now. It’s not all bad, I covered the basics! Over the past 8 years, I have learned more and more about our disease though still remain unable to read and understand medical research articles without difficulty. I knew enough about our disease in 2018 to confidently create a training company to educate professionals about our disease.
But, I have now lost confidence.
The language surrounding our disease has changed and I am struggling to keep up. I think if I’m having difficulty then other PwME will also be having difficulties – I am ‘us’ too. The emergence of Long Covid has brought with it many hundreds, if not thousands, of additional chronic illness advocates. Their ‘attitude’ is different, it’s much more proactive and aggressive than our community has been for a while. If they don’t like the terminology for a symptom – they suggest an alternative or argue that our terminology is wrong. Rightly or wrongly, this has caused some within our community to moderate their language and adapt. But, this leaves PwME who are not on social media, or perhaps haven’t seen that Twitter conversation, to fall behind.
Over the past two years, we have been told that describing M.E (or CFS) as an ‘invisible disability’ is wrong and that we should stop using that term. This has caused some PwME who previously confidently used that term, myself included, to wonder what descriptors to use instead. I haven’t been able to come up with an alternative, so have stopped posting about that particular aspect of M.E. Increasingly, I am not writing about various aspects of our disease as I worry it will offend or meet backlash because I am not using the correct terminology that has been agreed by others.
Is that ‘progress’?
My advocacy has become much more political and virtually everything I am currently working on requires the involvement of politicians to bring about social change for PwME in the UK. I enjoy my social entrepreneurship and can see that, over time, my hard work will pay off but I have no qualms in telling you that it is a hard slog…..every day. However, getting involved in the political side of M.E is much easier than worrying that I am not using the preferred terminology for each individual patient, it has become a minefield.
Foggy got his name from brain fog (though many think it is because of his globetrotting adventuring – Phileas Fogg…nope) and I will always describe my cognitive dysfunction as brain fog. In casual conversations with friends, I am much more likely to say ‘oops, forgot my words due to brain fog’ than… ‘oops, I lost my words due to cognitive dysfunction’. Perhaps it’s because the wider public and media has misappropriated our terminology to mean occasional forgetfulness but there seems to be a backlash over the term ‘brain fog’ within our community at the moment. This does not mean that it is any less appropriate ‘slang’ for our M.E symptom. I think when we type on social media about the alternative terms we should use instead, try to see it in a real world context. Would it require additional explaining? Could you slot it into a conversation without laughing, floundering to remember the exact term to use, struggling with pronunciation, or rolling your eyes? I am happy with brain fog because the wider public has a very rough (low level admittedly) idea of what brain fog could entail. Perhaps we should educate the public and media about the reality of brain fog and how using that term links them to the disease that they so willingly stigmatise, rather than change the language our community uses?
Since contracting Covid19 in 2020, I am also struggling to recognise where when chronic illness ends and the others begin. This means it is incredibly difficult to accurately write about my lived experience of M.E symptoms that may or may not be part of one of my other chronic illnesses! I’m starting to forget what symptoms I had up to the day I caught Covid19. Prior to the pandemic, I don’t think I ever used the word Dysautonomia, I wrote about all of the symptoms that name encompasses though. I simply saw them as M.E symptoms. However, it is now spoken about as an entirely separate condition by some quarters. In my mind, I have faulty a Autonomic Nervous System BECAUSE I have M.E and it feels very odd to talk about them as separate entities.
I have always raised awareness of M.E from the patient perspective. Irrespective of the latest research findings, what does it FEEL like to have M.E? What is the patient EXPERIENCE of having the disease? I’m not sure where I fit now with there being so many new advocates, all blogging about the patient experience using different terminology. I have to rediscover my place within our community but I’m sure I am not alone in that.
While I wait to rediscover my ‘place’ again, I am campaigning for a new system to report harms from non-pharmaceutical ‘treatments’ in the UK. The petition is international and the wider campaign is for UK residents only. Please get involved if you haven’t already. Thank you.
Link to petition and #ShakeItUp Campaign
and Foggy (OBVIOUSLY) xxx