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.


2 responses to “Contextual information

  1. Fiona Marcella

    I have one daughter with diagnosed endometriosis and one with undiagnosed (despite one formal NHS assessment) autism. As the autism isn’t diagnosed – or perhaps worse still because it has been ruled out by one Psychiatrist and is therefore self or mother-diagnosed, I don’t know whether it would be a helpful label or not. Anyway it isn’t MY diagnosis so I suppose it’s not for me to speculate. However I do think that the endometriosis diagnosis has been explanatory for the person getting it, and hopefully helpful in terms of future treatments, investigations etc. and I think the Autism diagnosis would be similarly helpful. I’m sorry that you have both these conditions as one is extremely painful and the other can make life more difficult for the person with it, but I’m glad that you have clinicians capable of making the diagnoses, and hope that you will continue to have clinicians capable of assisting you to overcome the difficulties posed by the conditions

  2. I am so glad you finally have a diagnosis that makes sense of your experiences – and I really hope that this will help you in the future.

    I was initially uncertain of what to think or feel when I got an autism diagnosis, but then relief set in, because having the diagnosis allowed me to be less hard on myself. I had had a longstanding diagnosis of Anorexia Nervosa (AN) that made little sense to me, and it made me feel so confused and angry. (Like, “why are you telling me I have AN when I don’t want to lose weight, I hate my thinness and am not fat phobic?). I really wanted help with ‘life’ and felt I wasn’t getting it.

    The autism diagnosis has enabled me to be more accepting of me for who I am; plus, it has also explained my restrictive eating and other ED behaviours in the context of autism rather than AN. I would watch people with AN gain weight and ultimately be able to get on with their lives in a way that I could not. I somehow hoped that weight gain would take away my autism, even though I didn’t know, at the time, that I was on the autism spectrum.

    I think this is good news for you! I hope you feel the same way too 🙂 xxx

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