James’ story

Published: September 17 2022
Last updated: September 28 2022

James compares his experiences of living with epilepsy and being gay

When exactly is an appropriate time to tell people that you are gay? Why is it necessary? When is it a good time to tell them about your epilepsy? Is it any of their business?

Neither are immediately obvious, yet both are integral to who I am as an individual.

I’m James. I work in the NHS as an ODP (Operating Department Practitioner). I have epilepsy, I’m gay and I live and work in Oxfordshire.

I think that society’s attitudes to being gay and towards people living with epilepsy have definitely improved ‘significantly’ over the last three decades. But when somebody has both…? Society doesn’t know how to process that yet. People tend to discover on a ‘need to know’ basis but at times it feels like I spend my entire life explaining who I am.

I feel relatively fortunate that throughout my life, my epilepsy has been managed by fantastic specialist neurological consultants. There’s an overwhelming sense of both relief and pride if I can attend my annual review without having to inform them of any horrifying near-death experiences.

I have generalised tonic clonic seizures. I take Keppra (levitiracetam) and Zonegran (Zonisamide) and have regularly encountered various issues regarding the substituting of my branded drugs with ‘generic’ versions.

My last seizure was unlike all the others. Usually after a seizure, my muscles will relax. However the awkwardness and force of my fall had meant that I’d given myself whiplash. The space between the back of my head down to my shoulder blades was fixed in spasm.

I took matters into my own hands and sought advice from my local ‘Cranial Osteopath’. He spent the next six months fixing me.

There are good days, bad days and ‘blonde’ days. My triggers tend to include the usual suspects. Lack of sleep, stress, fatigue, over- exertion, extreme humidity and doing unfamiliar activities in unfamiliar environments.

Whilst LGBTQ-lobbying organisations have made amazing progress on issues such as HIV treatment and awareness, same sex marriage and trans rights, there seems to be an ongoing resistance in acknowledging or addressing the issues facing LGBTQ individuals with disabilities (visible or invisible). We are still little more than an afterthought. Why?

A little more ‘inclusivity’, a little less ‘exclusivity’. A little more consideration and a lot less judgement would all go a long way in reducing stigma and improving self-esteem.

Things that I’m proud of: I’m proud of my mum. She instilled that resilient spirit in me from a young age. She took on GP’s and specialists when nobody really knew anything about epilepsy and always gave me a voice when I didn’t have one.

I’m proud of my musical achievements. I’m proud of the fact that I decided to re-train and that I have studied two different subjects at four different universities. I’m proud of the fact that I can live independently. I’m proud of the fact that I have not completely been put off travelling to far flung countries, despite having seizures on arrival in both Singapore and Los Angeles.

Most of all I’m proud of my continued membership of the gym, as up until a few years ago it had been my nemesis.

Epilepsy Action has always been a valuable reference point for me. The helpline is the most useful. Being able to speak to someone about an issue is really important (especially these days).

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