Hayley

I had my first seizure at 9 months old and got diagnosed at 18 months old. I am now 30 years old so I have had epilepsy for close to 29 years. I don't have just one type of seizure. I have had several different types of seizures over the years, currently my seizures are little and coming in clusters so I haven't had any seizures since September but back in September I had several in a period of 2 weeks.

My epilepsy makes it difficult in every aspect beyond the seizures. I am not allowed out to do things I love I can no longer take my emergency medication that I used to be able to. This has affected my independence drastically and makes me feel very isolated. On the odd occasion I do go out alone I am constantly terrified something will happen to me as I have before now had a seizure in public and lost consciousness and when I came to found that some strangers had dumped me in an underground car park and hurled abuse at me and threatened me. People are mean to me so when I do go out I tend to have people with me.

If I didn't have PIP I couldn't do anything. I wouldn't be able to afford my bills, keep a roof over my head or have any kind of social existence. Aside from the financial aspect I feel the stress would cause continuous seizures and eventually I would lose the will to keep fighting and keep trying. Even the strongest of people have a breaking point. How can I not be stressed at the idea of losing my home, my health and my independence and much more? The whole thing is painful and exhausting and I wouldn't wish the process on my worst enemy.

When applying for benefits or renewing benefits I found people don't believe you require help or any kind of benefit if you don't look ill or if you are able to file the forms for the benefits. Many times I have renewed and reapplied for benefits, especially PIP, and they have turned me away and said I don't qualify. This has led to me having to beg and borrow money from others and made it difficult to pay my bills whilst I go through the reconsideration process and more often than not this leads to a tribunal case again. I find all the stress causes me seizures and makes life a lot harder than it needs to be, especially when all I want is to be treated the same as people without epilepsy and health issues.

The main point the assessors mention is that they don't feel my epilepsy is as bad or as upsetting as I have explained in my PIP renewal forms. I found they often come back with the same explanation when we have asked for a reconsideration. It takes us seeing a judge and a panel of people at a tribunal hearing to decide just how severe my epilepsy is. I feel me being dragged through this kind of treatment and making me jump through hoops for the help I am entitled to is hurtful and crippling emotionally.

I want the system to understand and support that not all disabilities are visible! Just because you don't look ill doesn't mean you aren't. Epilepsy comes with a lot of side-effects and that is without medication. As someone who’s had epilepsy for many years, I have faced constant discrimination. I have had people accuse me of being drunk or high when I'm actually ill, members of the NHS have cowered from me because when I have a seizure I look odd or sound funny, I have been bullied, beaten and put down for 30 years! That’s just part of having epilepsy. The system should give people a fair chance - it doesn't matter if you have a physical disability, mental health disability or anything else because having epilepsy is still a disability and I can say from experience it is the most exhausting and upsetting experiences I have ever had. I wish for myself and others with epilepsy the welfare system could understand how it affects us and then maybe they wouldn't be so quick to disregard the help we need to support us with our condition.

Hayley
Add your story