Portia's story

Portia Hibbert has written a memoir, My Journey with Epilepsy, reflecting her personal journey navigating life with the condition, the trials and tribulations, the emotional and physical impacts and the importance of support from loved ones.

Now aged 33, Portia was diagnosed at the age of 14 with juvenile generalised epilepsy. Her seizures affect both sides of her brain, and she experiences both absence and tonic-clonic seizures. As her seizures come from multiple areas of her brain, she describes the experience as a lightning storm.

Having once feared being judged or labelled ‘the girl with epilepsy’ at school, Portia now writes openly and honestly about how the condition has shaped her life. Having experienced the changing nature of the condition and its impact firsthand, she hopes to use her experiences to raise awareness of epilepsy and help others living with it feel less alone.

She writes candidly about the different medications and their side effects, from taking sodium valproate in her early twenties to then changing her ASM when she was contemplating starting a family.

Experiencing both tonic-clonic and absence seizures as well as migraines, Portia shares the physical and mental impact of living with epilepsy. She is very philosophical about her condition and describes how she has had to make changes in her life and adjust her energy levels: “I used to be able to do long walks, socialise more and have long days. Now, it is like my bucket of energy has a leak in it. Sometimes the leak is tiny, and so the bucket leaks slower; sometimes it is a big hole which empties the bucket far too quickly. Every day, the size of the bucket is different.”

Portia writes about intimacy and friendships and reflects on the need to look after yourself and not diminish your condition: “Over time, talking about my epilepsy has become easier. The more I talk about it, the easier it has become to give a quick summary of my condition and then take the conversation from there. For a long time, it was always caveated with comments like ‘it’s not that bad’ and ‘I’m quite lucky really’. However, comments like this can also dismiss your own feelings around having epilepsy and I have learnt not to do it so much.”

“Epilepsy and life experiences have altered my way of thinking when it comes to dating. I put myself and my needs higher than I used to and try not to blame myself for not being able to reach someone else’s expectations.”

Having worked in the UK and abroad, Portia has had a varied career and enjoyed challenging roles, but in 2021 she noticed that her memory and processing skills were regressing. This didn’t stop her doing well at her job, and she was promoted the following year. However, she noticed that managing different projects and subprojects was proving more difficult to handle and she was finding it harder to process tasks at the speed she was used to doing. Portia had to go off work on a prolonged absence when she changed her medication, and she was unable to work full-time. She was let go from her job, but she has now decided to focus on being an artist while she is still feeling unwell. 

Portia said: “Being an artist allows me the flexibility to work with my disability. Not having a set schedule allows me to give my brain space to recover and relax when it’s needed. My journey with epilepsy hugely influences and inspires my artwork. My loss of memory, my struggle to get words out, vulnerability and letting go are core themes of a lot of my work. I hope that sharing my journey allows those with epilepsy or perhaps another life-changing condition to see that they are not alone in how they feel.”

“My Journey with Epilepsy” by Portia Hibbert is available for sale from both Waterstones and Amazon.
 

You can also view Portia's artworks at: Art from Portia