*This post may be triggering to some, please take care.*
Epilepsy and mental health go hand in hand to some degree.
You have to stay on top of your mental health to stay on top of your epilepsy and you have to stay on top of your epilepsy to stay on top of your mental health.
The majority of people with epilepsy (PWE) will experience anxiety and/or depression. I have experience in both anxiety and depression, and I know how hard they are to deal with alone let alone on top of having epilepsy.
I know that when my epilepsy was at it’s worst so was my mental health and my poor mental health caused more seizures. At my worst I experienced suicidal ideation, considering how many tablets from my cocktail of medications I take it would take to stop the pain, and I cried out about wanting to end it all so many times.
In reality what I wanted to end was the pain and the suffering from what I was experiencing, not my life, but I knew no different as a teen or young adult suffering through life changing events but expected to keep up with an abled life with minimal support.
I was lost and didn’t know where to turn. Epilepsy has stigma in itself but so do mental health issues, so I didn’t want to ask for help and face more problems from doing so. All I wanted was to hide and end it all.
There were plenty of instances where I could call my paediatrician neglectful but surprisingly she saw my anxiety and kept suggesting I get mental help through the psychology department but I always refused and denied that I was suffering. Part of her reasoning to push me into psychology was because my FND at the time was undiagnosed and she believed my symptoms were all in my head, but she did see my need for help with anxiety. I was better at hiding my depression though.
I suffered in silence for years until one day I broke. I hit rock bottom.
I couldn’t even voice my suffering verbally, I had to write a letter to my mum begging for help. I’ll never forget that night.
Thankfully my mum opened her arms to me instantly and made sure I got the help I needed. Ever since she’s made sure I’ve only ever gotten adequate care. It’s been a rocky path of balancing my mental health with my other health conditions but I’m thankful I spoke out.
I’m far from perfect or cured but having my psych team involved has helped me tremendously. I now get enough sleep at the right times which lowers the risk of triggering anything, I can take public transport without a panic attack most days and I actually know what it’s like to be a PWE and still experience moments of happiness.
Please be patient with PWE as we do experience these hardships and help us find the path to help as it really is helpful and is worth every bit of hard work.