Today I celebrate Purple Day 2021 – an internationally recognised effort dedicated to increasing understanding about epilepsy worldwide. It’s an opportunity to get people talking about epilepsy by raising awareness of the condition and for organisations like the UK’s Epilepsy Society, it provides a vital opportunity to raise funds following a difficult year for all in the charitable sector.
Like so many my epilepsy diagnosis came completely out of the blue following my first seizure aged 9. I was eventually diagnosed with autosomal nocturnal frontal lobe epilepsy (more recently described as SHE – Sleep-related Hypermobility Epilepsy). Whilst this is a life-long condition, the seizures can be well controlled with anti-seizure medication.
Purple Day this year has given me the opportunity to reflect on my relationship with epilepsy which seems to fall in to three ‘areas’:
- Driving – if I am being honest my biggest fear is having another seizure which impacts on my ability to drive. This happened many years ago whilst I was learning to drive so it did not have the devastating effect that it would undoubtedly have now. The DVLA regularly monitors my situation to make sure nothing has changed (and rightly so) but I dread those brown envelopes from Swansea arriving through the door. I cannot adequately describe the anxiety I feel when I send off the information they have requested and wait nervously for their response.
- Holidays – getting travel insurance used to be a challenge, I frequently experienced the ‘computer says no’ type treatment. Mercifully now it is much less of an issue with the comparison websites improving the quality of questions they ask and the number of insurers offering suitable cover increasing, which seems to have reduced the cost. Handy should I ever get to go on holiday again…
- Self-care – my most significant seizure occurred in my 20s when I was working in the utility sector which at that time was undergoing transformational change through deregulation. It was a period in my life I would describe now as ‘silly busy’ – we worked 7 days a week as standard, it was a constantly changing environment of learning and uncertainty. Eventually I paid the price with a seizure that is frightening to think of now and some debilitating short-term memory loss afterwards. I took some time off work and learnt the value of self-care and work-life balance the hard way.
Research published by Epilepsy Action and Bangor University in 2019 shows some interesting attitudes towards epilepsy in the UK. Around 4,000 respondents were asked to share their views with the aim of identifying if the stigma associated with having epilepsy was mostly felt (i.e. feelings of worry and expectations of discrimination stop individuals from talking about their epilepsy) or ‘enacted’ (i.e. where individuals with epilepsy are treated unfairly by others) or indeed both. The research looked at topics such as attitudes towards driving, looking after children, personal fear, social avoidance, work and negative stereotypes.
Like many studies of this nature, the results provided cause for concern but also optimism. Worryingly 1 in 100 of the respondents had a ‘very negative’ attitude towards those with epilepsy but equally the research found that the average person in the UK had a largely positive attitude.
Personally my experiences so far have fallen within the latter category with friends, family, colleagues, clients, etc displaying a combination of support and curiosity when I talk about my condition.
In conclusion, opportunities such as Purple Day are vital to kick start those essential conversations around epilepsy which will help to dispel any myths and improve general awareness. I hope that by sharing my thoughts and feelings on my relationship with epilepsy, I have encouraged others to share so that we can continue to reduce any remaining fear or prejudice that exists. Happy Purple Day 2021 everyone!
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