This world isn’t made for people like me - people with invisible disabilities.
I’m not saying that to exhort sympathy. I’m saying it because it is fact.
I was bullied out of my job, because of my invisible disability.
I have epilepsy and I was bullied so badly, I became too sick to work and eventually had to leave.
I now live on benefits and trolls on social media call me a benefit scrounger. Previous to losing my job, I worked for 12 years, after graduating from university. I also studied for a Masters during those years. When I lost my job I attempted to take my own life, because I didn’t know what else to do… It was the only career path I’d ever planned.
My Epilepsy Nurse Specialist suggested that I apply for Personal Independence Payments, also known as PIP. Unlike Employment Support Allowance, PIP helps you with your disability and allows you to live independently. Supposedly.
The assessment process is degrading. As somebody with Epilepsy and Mental Health issues, I spend my life proving to the world that I am sick, and yet again I was required to prove my sickness. During the assessment, part of me had wished that I’d had a seizure there and then, unfortunately “luck” wasn’t on my side. The questions bore no correlation to my condition whatsoever and the assessor who was so “effortlessly warm” at the beginning of the assessment, barely even typed as I poured out my soul and by the end of the assessment was a dark-eyed robot. So when the report came in the post weeks later, it was easy to see why so much of it was a contradiction to what I’d told the assessor and what my partner had heard as he sat next to me.
The assessor was shocked when she saw that I struggled to write my own name because I’d had a seizure three days prior to the assessment; she was shocked when I told her about my job; she was shocked to hear that on bad days I can’t even walk to my GP surgery which is only a 15 minute walk away, or stand in the shower which is why we have an unbecoming IKEA stool in our lovely bathroom, that when my partner is away I can’t cook for myself because I can’t be by the stove unsupervised; she was shocked to hear that if I have a seizure while out, I become confused and lose my way and struggle to read maps - even a tube map, yet I grew up in London. Every Londoner knows that a tube map is like their children’s Bible and by the time you hit adolescence, you don’t even need that bad boy because you have it memorised. Well, not when you have recurrent seizures.
None of this was in this assessment report however... No mention of my awkward crying either, or the constant prompting for answers, because of my slow brain. Furthermore, my mobility problems, medical history and mental health issues were also relegated to thin air, and in the end I scored zero points.
I’m not the only person with Epilepsy this has happened to during a PIP Assessment either. In fact, according to Epilepsy Action, 60% of people with Epilepsy who were previously in receipt of Disability Living Allowance (DLA) had their award decreased or disallowed following a reassessment for PIP. This is 20% higher than for any other condition.
Epilepsy is about seizures, however that’s only part of the illness. A lot of it is about recovery too. My last grand mal seizure was in May and left me bedridden for three months. Luckily I had my partner to take care of me.
I have focal onset seizures ranging from between once a week to sometimes ten to fifteen a day - these leave me confused, exhausted, emotional, unaware, and unable to speak or move. I’ve caused harm to myself many times, being alone in my flat while my partner is at work.
These seizures have also caused muscle tension in my left leg, which was ignored by the PIP Assessor. This affects my mobility; I’m only 31 yet most days I struggle to walk up the stairs to my flat or stand at my sink to do washing up. My musculoskeletal condition was ignored by the PIP Assessor, but later diagnosed by an A&E consultant.
My medication carries side effects of drowsiness, meaning that I struggle to stay awake most days. The medication side effects and seizures also affect my cognition, so I sometimes struggle with speaking, reading and writing. One day I can be a book geek, the next I can be like a baby, starting from scratch and not knowing how long it will last for. Can you imagine how frustrating that is?
When I received the report denying me PIP, I cried for days.
This isn’t just about the money I need to survive. It’s also about validation in a society that constantly rejects people like me. After everything I’ve been through this year, to receive that rejection letter from the PIP Assessor, was a massive blow. People like me should not need to prove that we are sick, just because we don’t look it. That’s not our job. Now, during a time when I’m supposed to be focusing on getting better, instead I’m having to use my strength to appeal against the PIP Assessment decision, as well as fight the constant stigmatisation of invisible disabilities in this country.
I received the Mandatory Reconsideration Notice in the Post over the weekend, to notify me that the DWP have refused to reconsider my application for PIP because I can walk, I read poetry and although I have seizures and mental health issues, I show no signs of physical or psychological distress.
If that isn’t disability discrimination, then I don’t know what is.
And I will keep on fighting, which means that I will appeal, because although the Government have recently announced that they have made small steps to show that they are listening, they still have a long way to go to prove that we are being heard.