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I didn’t realise it was possible to have impostor syndrome about a diagnosis

This may sound like an abstract concept, so bear with me.

If you’ve been following me for a while, you may recall that I posted a few months ago about life without a formal diagnosis of my chronic illness. For years I’ve been battling through chronic pain and other assorted symptoms, without a single person able to give me a definitive answer as to WHY these symptoms existed. When I last wrote about this back in early summer, I was just beginning to explore the possibility of having ME/CFS (Myalgic Encephelomyelitis or Chronic Fatigue Syndrome), rather than a connective tissue disorder as all of my other doctors seemed to think.

And six weeks ago it was finally diagnosed. After upwards of six years of persistent tiredness, with a simultaneous three-plus years of chronic pain and a myriad of other symptoms appearing in the last year or so… I finally got diagnosed with ME/CFS.

…Kind of.

I did have to persuade the doctor. He is of the persuasion that the condition doesn’t exist at all. I won’t go into details, but I can tell you that it very much does exist – I, and the other approximately 17 million people who have ME/CFS, are living proof! I was advised to do more exercise (I wish I could, mate) and drink more water (currently doing so right now). And… that’s it. That was all I got. Is it any wonder, therefore, that I’m now facing a crisis of confidence ABOUT MY OWN DIAGNOSIS?

I should probably explain that, of the five ‘main’ symptoms listed on the NHS website, I have four of them. I also have four of the six additional symptoms they list. I compiled a Word document of my entire medical history: all the tests I’ve had, all the scans and X-rays, all the information I could compile. And the more I looked through my records, the more I wrote, the more I was convinced that ME/CFS was the right diagnosis.

And it felt like it at the time. It really did. I came out of the appointment feeling vindicated. But now… I’m worried. There’s one big question in my mind – one that I’m sure many fellow chronic-illness-sufferers will recognise: ‘AM I SICK ENOUGH?’

Probably not the best way to phrase it, but that’s the question as it reads in my mind. It feels like a kind of impostor syndrome, as the brilliant Chloe Keto pointed out to me a few weeks ago. I think – at the moment, at least – I’m on the mild end of ME/CFS. I go to work, I have a hobby (not one that involves physical exertion, thank God), and I have something of a social life. They’re all a huge struggle, but I manage them. I keep thinking that I cannot have all these things AND have ME/CFS. It’s almost like I don’t believe myself when I say that I have ME/CFS – it’s why I’ve kept quiet about it in my personal life.

But chronic illness is fluid. The NHS website literally says ‘severity of symptoms can vary from day to day, or even within a day’ – and last Saturday was a prime example of that. I went to London for the day – and within an hour of getting there, I felt quite honestly like death warmed up. The morning felt like one long series of hopping from chair-to-chair. In cafes, on a planter on Regent Street, next to the mannequins in Primark – anywhere I could perch myself, even if it wasn’t a chair. But then I was sitting in John Lewis on Oxford Street having a Diet Coke… and I turned a corner. I started to perk up. Maybe it was the Diet Coke (after all, I hear Jessica Kellgren-Fozard swears by it…) or maybe it was just my body going ‘okay, time to give you a little relief’. I don’t know, honestly. I’m just glad it happened, and I was able to enjoy a part of my day.

I suppose that’s what life with ME/CFS is. Moments of sweet relief amongst the exhaustion.

I hope that I will come to terms with the diagnosis in time. It feels stupid: I’ve been praying for an answer for years, and now I’ve got it, I’m struggling to accept it because I don’t feel ‘enough’. But I am only nineteen, I have to keep reminding myself. I have a lot to learn.

I spoke about this on my Twitter account a few weeks ago. I asked my followers: am I alone? Seven wonderful people responded: 'you are not alone'. So if you’re reading this and identifying with it, that is the message I hope you take away.

(And if anyone has any life-hacks for living with ME/CFS, you know where to send them…)



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