Diane Shipley writes about her experiences as as an ill person in a well person’s world...
Miss Diagnosis
This is how things worked when I was a kid: you felt bad, you saw a doctor, they told you (or your mum/dad/primary caregiver) what was wrong and gave you treatment. Simple!
Get M.E, and suddenly you find out just how complicated getting a diagnosis can be. M.E is a diagnosis of exclusion, meaning once anything else they can think of (from cancer to scoliosis to the West Nile virus) has been ruled out, M.E can get ruled in. But that’s only the best case scenario. The worst case scenario would be - hi there! - me.
I understand, really I do, why I was told for four long years that I had clinical depression. When I first saw my GP I was so sleep deprived, exhausted, (and full of jet lag after a long flight) that I could hardly stop crying long enough to say my name. I was non compos mentus, completely cracked. If I’d been a doctor and seen myself, I would have shipped me off to the mental ward post-haste so I was lucky to escape with just a packet of Prozac. But when they - and nine other anti-depressants - did nothing, and when I complained of every classic M.E symptom under the sun (from daily diarrhoea - sorry, TMI?) to complete exhaustion after the tiniest amount of activity to severe PMS to memory loss and confusion (M.E is a neurological illness so it affects the brain, hormones, immune and digestion systems indiscriminately) shouldn’t someone have done more than made notes on my chart, mumbled, and told me it was all psychosomatic?
At my first second opinion, I was told M.E didn’t exist. At the next, that it did exist, but I didn’t have it. Then finally, in a piece de resistance par excellence, I was told that M.E did exist, that I might well have it but that there was no point diagnosing me because: “It’s not an illness you want to have.”
That’s when the NHS and I parted ways…but not before I tried one last time with another GP at my original surgery who told me that I was just down about having spots and needed to go on the pill and take up jogging.
Seriously.
Somehow, miraculously, in 2002 I heard rumours of a mythical being - a private GP who was reasonably priced and knew all about M.E (unfortunately for him, he’d had it himself, so couldn’t really refute its existence).Shaking, quaking and hardly daring to hope, I took my urine sample (TMI again? Apologies!) to see him and never looked back. He believed me. It didn’t matter whether he could help me (although he has) just that he looked me in the eyes and said I wasn’t imagining it, I really was physically ill. And as much as that was difficult to hear, it was also one of the best moments of my life. When you know what’s wrong with you, you can concentrate on getting better. Hopefully.
Next week: Can I keep my natural sweetness… without sugar?
Diane co-edits Shiny Media’s fabulous women’s fiction blog, Trashionista and contributes to TV Scoop and Catwalk Queen, as well as writing a personal blog, What Do You Do?
