Contextual information

A year ago in August 2015, I was diagnosed with endometriosis after having exploratory surgery. I wondered prior to my operation whether I was making a huge mistake – whether I had such a pathological desire for validation that I would even go under the knife unnecessarily. I thought this way despite knowing logically that I had been tolerating excruciating period pain for 15 years by that point, and that other weird and increasingly debilitating symptoms related to fatigue, my bladder, and my digestive system, had been worsening ever since my periods had come back during weight restoration in 2009. I decided to go through with it anyway, but a part of me remained convinced I was making it up; that I was just oversensitive, exaggerating the problem, or lacking the ability to cope with normal amounts of pain. When I woke up to find my abdomen had four holes instead of the two I’d expected, which suggested the surgeon had indeed found something worth removing, I was so surprised (well, as surprised as it is possible to be immediately after being knocked out with ketamine. Trippy). In the following weeks, my surgery and diagnosis made a huge difference to my mental health. I was kinder to myself, more understanding when I was exhausted or feeling ill, the pain no longer scared me so much because I knew what it was, and having less inflamed mutant uterus lurking around my abdominal cavity had a big impact on my energy levels. It was, also, very validating: the pain, and the cause of it, were demonstrably real. I’d even seen the photographs to prove it.

On Tuesday last week, in the final few days of August 2016, another team of specialists assessed whether I had an undiagnosed condition which had been causing havoc with my life. Again, before seeing them I questioned whether I was just imagining things, looking for easy answers, or trying to find excuses for my inability to function as others do, when really I just needed to toughen up. I suspected the assessors would think similarly of me, and treat me like a time-waster. I wondered why I was putting myself through the risk of encountering unsympathetic professionals again, after last years’ debacle with the CMHT.

Instead, I came away with a diagnosis of autism.

The assessors didn’t just listen to me, they observed how I reacted to questions, how I structured answers, my facial expressions, and my body language. They told me beforehand that if they weren’t certain, they would seek other sources of information on my childhood to confirm or deny. But that wasn’t necessary, because they were very sure. And despite suspecting this for a while now, I was taken aback by the novelty of two NHS professionals believing me on the subject of my brain.

There is a wider conversation to be had about the way society views psychosomatic pain, or desperate, chaotic behaviour driven entirely by psychosocial causes, because these should be treated with equal respect as rogue endometrium and neurological conditions. But after everything I’ve been through and sought help for and been disbelieved or misinterpreted about, and after feeling so alone and scared for so much of my life, I suddenly have context. I have one label with which I can finally form a coherent narrative about my life, rather than 10 disparate diagnoses which hang and cling in the wrong places if left to their own devices, leaving me scrambling to pin and tuck and tie them together into something that vaguely makes sense.

Nothing has changed. I am still the same person I have been for the last 31 years. And yet everything is different.