PIP and UC - the story so far

The story so far… I have had neurological conditions including epilepsy since childhood. I have tried and failed to hold down any kind of job, although I have gained a degree, of which I am very proud. I have struggled over the years to access financial support like benefits and found the process of claiming confusing and stressful. I appealed the DWP decision to reject my Universal Credit LCWRA application nearly 10 years ago and had a seizure whilst attending court. I was still turned down at that appeal.
Eventually I gained the LCWRA after years of trying and failing. I started a claim for PIP in 2021 and went to appeal after being rejected by the DWP. My appeal was rejected as I was not well enough to attend. I lost my home due to rent increases I couldn’t afford and had to move to a new area to afford rent. I like where I live a lot, but I don’t know it and have had to go through many unnecessary medical processes with new doctors and tests to establish I have serious health problems. In 2023 I began another claim for PIP. I had no medical records of relevant medical history (like initial diagnosis and EEG result from decades ago) so went through another unnecessary EEG a few years ago which proved I had epilepsy (the test provoked partial seizures). I now have my PIP after a long and painful appeal process, but it has been in the review process for a year now (since summer 2026).
I am really worried that due to being diagnosed in childhood I will always struggle to prove my disability to DWP and the benefit processes fill me with fear. I feel at a loss as to what I can do to protect myself and complete the application processes when I need to. This website, along with others like Epilepsy Action has been a lifeline for me. I have spoken to some amazing medical staff but there is a limit to what they can do if the DWP does not accept or even acknowledge my evidence. The thought of going through another appeal keeps me up at night. I can honestly say that the advice and information available on this website made all the difference in me winning my last appeal. I have PIP now and it was backdated but is under review. I don’t have answers for anyone reading this or even an end to my story yet, as I am still waiting for an update on the review, but I wanted to put my this message on this forum as reading the stories - good news and bad news - of others over the years has kept me going and kept me hopeful. I send all my support and best wishes to anyone going through this difficult process either for themselves or on behalf of someone else.