If you would like to talk to someone about epilepsy, our trained advisers are here to help.
I have tonic clonic seizures, usually twice a month, and frequent blackouts. The seizures affect me badly. I sleep for the whole day afterwards and can’t function at normal speed for several days after. I have two sons, aged 17 and 9. My youngest saw me have a seizure recently which really scared him.
I’m from a strong military background and was always brought up to be self-sufficient. Claiming benefits was not in my nature. But I’ve struggled to find work since March 2020. I have two kids and I was becoming housebound and my costs were, and still are, mounting up.
When I have told potential employers about my epilepsy and diabetes, they find reasons not to employ me. So I’ve returned to full time education to better myself and to prove that my epilepsy is not a barrier. I’m currently studying social sciences and GCSE biology to hopefully go on to do my primary education degree.
I receive Universal Credit. The extra £20.00 a week helped slightly in helping to cover my monthly bills, putting fuel in my car to get kids to school and college. But with the government cutting this I am finding myself in financial hardship. Not only am I losing the £20.00 a week, but I’m paying another £133.00 for over payments, which is leaving me with unpaid bills. But I can’t get additional financial support from Universal Credit. If I ask for help, I just get fobbed off with food banks and told to manage my money better.
I don’t receive PIP, as according to the DWP I’m not entitled to it as I can ‘function without aids’ and can communicate. I did once fight for it and was successful by tribunal but they tried to appeal the judge’s decision. Then I had to fight for my backdated payments. I never renewed because the stress made me ill.
This new system seems to benefit those that know how to fiddle the system, and those that don’t work. Being breathless and using a walking stick seems to work. Less visible conditions don’t mean anything to the assessors. The biggest problem claiming benefits is the government’s lack of understanding of epilepsy.
Until they walk in our shoes, they won’t realise the true impact our health has on each and every one of us.