An ill-fitting box

‘…I put the word “diagnosis” in quotes because I have not yet seen that case in which a “diagnosis” led to a “cure”, or in fact to any outcome other than a confirmed, and therefore an enforced, debility.’ – Joan Didion, Blue Nights.

I spent decades wanting a diagnosis, a meaning, a reason for the constellation of symptoms that haunted my life. I traipsed back and forth to the doctors with increasing anxiety, so much so that they diagnosed me with increasing anxiety. I couldn’t make them see what I knew, what I had known for years – there was SOMETHING WRONG WITH ME. But I didn’t fit nicely into any of their boxes except one marked ‘neurotic’. A battered and worn box that had previously held many other women, with many other random symptoms that would one day manifest as something bigger, and we’d need a bigger box. So, I took up residence in the box marked ‘neurotic’ and was passed around grudgingly, each new consultant, specialist or worn out registrar would lift the lid, take one look and mark me unremarkable…just neurotic. I hate to bang the feminist drum, but women have been dealt this hand for centuries – it would be unremarkable, if it weren’t for the reason that they (doctors) were, and are often wrong.

My symptoms were seemingly random but now that I have my (two) rare diagnoses, I can see the pattern. I say I can see the pattern – I could always see the pattern, it just didn’t make sense to me – it was a Rorschach test inked into my DNA. So, I had sleep studies and brain scans and blood tests. I had electrodes glued to my scalp and seizures induced. But still no more than an eyebrow was (reluctantly) raised; my seizure was not a good enough seizure – ‘we don’t treat those ones now’ the bored neurologist said. I was put back in the box.

I wasn’t comfortable in the box; my lower back and cervical spine had been causing me pain for far too long, as had the ‘electric currents’ that shot through my thighs. My hearing was going, the tinnitus whooshed through my head; I imagined neurons lighting up like a pinball machine. Then one day, half way across the world in a tropical paradise, I noticed my left calf was disappearing – my highly toned legs looked decidedly wonky. I was duly sent to another specialist.

He sat imperiously behind the desk; a medical student banished to the back of the room, deliberately diminished by his mentor’s imperiousness. He asked for my medical history…back pain (immaterial), neck pain (irrelevant), my mum’s MS (slightly arched eyebrow), moderate deafness – he leans forward like a predatory hawk – ‘you don’t seem very deaf’, he says dismissively. I blink and carry on…depression… ‘Ah!’ he says, ‘Ah!’ says the medical student – they lock eyes knowingly and I crawl back in the box; the one marked ‘neurotic’. He says has no explanation for the disappearing calf muscle except that I must have had a crush injury at some point. I tell him I have no recollection of a crush injury of that leg at any point. He says I must have had a crush injury. The MRI shows some form of focal irritation of my gastrocnemius. No doubt from the crush injury I must have had.

Fast forward a year and I am sick of the pain and stiffness that permeates my body. Having recently won the divorce lottery, I treat myself to a full body MRI scan. The results are fairly boring except for an ‘incidental finding of a large Tarlov cyst’ on my sacrum and a ‘lumbosacral transitional vertebrae’. I do what any self-respecting researcher does and Google them both. They seem perfect candidates for my constellation of symptoms…apart from the deafness.

I now feel as if I am at last beginning to see something in that Rorschach test, and it looks remarkably like a sacrum… to be continued