I had epilepsy as a toddler back in the 1970s. I was medicated for three years and then because I had had no further symptoms or seizures, I was ‘cured’. I was formally diagnosed as an adult at 46 following a prolonged tonic clonic seizure. I have tonic clonic, absence and focal impaired awareness seizures. I required some reasonable adjustments at my workplace so that I could continue to work, however, my employer was unwilling to make any of them, despite Occupational Health supporting me. So I was given ill health retirement. I would like to work again if I can.

I find applying for PIP stressful. The paperwork is difficult to complete and the last interview was very stressful too. I don’t think the assessors understand that epilepsy isn’t just about having seizures. I also have significant memory and word recall issues, anxiety, insomnia and migraines all related to epilepsy. I can forget simple tasks such as taking my medication, forgetting to eat, or how to operate the microwave. I forget words and this causes me a lot of distress, frustration and embarrassment. I have been accused of being drunk on occasions due to forgetting words or my speech being slurred. I also have problems with concentration. I don’t really have a social life. I find it very difficult in social situations in case I forget things and words and there is always the fear of having a seizure in a public place. My husband does all the shopping now.

Epilepsy has had a profound effect on my mental health. I have developed insomnia and quite debilitating anxiety to an extent where I have almost come to a point of self-harm. I no longer feel confident to stay in the house on my own and so my son will come round to sit with me whilst my husband goes out. I have been on anti-depressants and need sleeping tablets. The help I need at home is usually in relation to prompting me not to forget things. I have had seizures in the shower and damaged both my shoulders. I had to have surgery to repair them. We are having a new shower installed soon so my husband can more easily step in to help me if I have a seizure whilst showering. This is very expensive, so I appreciate any financial support, especially as I do not receive any additional benefits.

It seems almost a waste of time to have to be reassessed for PIP every 2 years. I think there is still a lot of ignorance around hidden disabilities. Epilepsy sadly is not curable and therefore doesn’t magically disappear. Stress is a big trigger for me so it would be helpful if I didn’t have to keep completing the same paperwork and be put through the same humiliating interview. On the day of my PIP assessment, I had three seizures and I will do anything in the future not to provoke seizures and this may mean that I will not re-apply.

When I received a written copy of the assessment and what I had been awarded (I was awarded the lower level daily living allowance) a comment was made that as I was able to answer some of the questions quite comprehensively myself, then I don’t need much help. It was also noted that I should be able to use a microwave and that would be enough to meet my nutritional needs. I can physically put food in and out of the microwave but quite often my husband has to instruct me as I forget which buttons to press. He tells me he often finds the milk in the dishwasher. I think there is an assumption that people with epilepsy always have just bad days or just good days with nothing in between. Since my diagnosis and in part due to my medication, I now have insomnia which can severely impact on my daily function and ability to think logically. Today is a good day: I had four hours sleep last night.

I have been seizure free for just over a year now so I have got my driving licence back, purely so I have a form of photo ID. I doubt I will drive, as I forget where to go and the anxiety of having to travel on my own on public transport is crippling for me. When I did feel more confident to travel on my own, I got on the wrong buses or trains and a few times I had seizures whilst travelling alone. I thought long and hard about getting my driving licence but I need a form of photo ID sometimes. But at the PIP assessment I was told that if I had a driving licence I would not be eligible for PIP.

It is very upsetting that PIP assessors do not recognise that epilepsy isn’t just about dropping to the floor and foaming at the mouth. So I am prepared that I will not receive PIP next time now that my seizures are more controlled. Financially, having PIP takes a huge pressure off me, especially with travel costs. My husband and I have already had discussions about my next application and the stress it will involve. We have decided that it will probably be easier to sell our current home and buy something cheaper to alleviate some of the financial pressure if I no longer receive PIP.

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