RAiISE Your Voice is a series of blog posts in which we provide a platform for young people to share their stories and speak up about issues they face whilst living with invisible illnesses and conditions. In this post, coinciding with Mental Health Awareness Week, we hear from Charlie about his journey.
As someone who has been through the wringer hospital wise, I can relate to battling with mental health. Since I was born, I’ve had medical issues. It’s something I’ve just had to deal with the fantastic support of my family. I have had to deal with various family members close to me pass away, losing a whole summer to toxicity of an epilepsy drug, and having to start to live as independent adult with a chronic illness.
The above quote is from a Paramore song, which has a funky 80s vibe to it, whilst the lead singer and songwriter Hayley Williams opens up about her struggle with depression. The upbeat vibe of that entire album is just the same as putting on a smile but feeling like hell underneath whilst talking to everyone you meet. People would ask ‘So how are you?” My reply would always be “I’m fine”. I could have spent the week dreadfully ill in hospital, had a night where sleep paralysis set in or just left my uncle after caring for him for the day. I’d very much created my own ‘Auto-Pilot’ to those everyday questions family and friends ask out of politeness. There was only my parents who could see through my mask.
In 2011, my health took a big nosedive. I’d been diagnosed with epilepsy from a young age but only had night episodes. It wasn’t until 2011 that I started having tonic-clonic seizures, the ones most people think of when thinking of the condition. It started me going into learning support (a bit of secondary school full of staff that knew my condition) even if I had the faintest feeling I’d had in my head that had led to my first seizure. I then started on new medication, with one in particular causing me grave illness. I would spend months in and out of hospital every weekend for months on end, losing tons of weight and to the point I was vomiting up blood. The problem was my epilepsy doctor was always busy when i was admitted and would just up my dosage every time. It got so bad my parents thought they’d be digging a grave for their 12 year old boy. It wasn’t until a stand in doctor came in for my epilepsy doctor and got the nurses to check my blood: I was toxic to the drug. A lot of issues I’m still having now that are incredibly complex are due to that year where I almost died. I have a lot of resentment to that year mainly because of my experience that I’m going to move on before I think about it too much.
I’ve had to have an intervention at one point in 2015. I’d passed my GSCEs and had started A-levels, but then was ill and ended up bed-bound for around 10 weeks. I was stuck in the same 4 walls in my upstairs bedroom and I became very depressed. It was hard for my parent’s as with a chronic illness there is nothing they can do to make me better. They couldn’t make my bad feeling head disappear, they couldn’t let me live a normal life where i could go anywhere without them or a carer. I knew they couldn’t do anything, but an intervention was needed. For years I’ve had the support of a local charity that has supported me for many years. My mum phoned them and within half an hour a volunteer of the charity was round. He ordered my mum and dad to take a break whilst he came to see me. It was what I needed. We ended watching my Favourite film at the time ‘MAD MAX:FURY ROAD’ and had a much needed chat that got things off my chest, the dark thoughts I was having and didn’t want to share with my parents in case of worrying. I needed someone that wasn’t family to open up to. I got a lot of cabin fever stuck in those same 4 walls. I had another deep chat with a worker which also helped me get out of that hole. I’m forever thankful for those two evenings that saved me from the worst outcome.
Luckily, present day me is fairing a lot better now. I’ve still gone through the pain of losing a close relative and my diagnosis of Rheumatoid Arthritis straight after was a suckerpunch. I manage to get out 3 days a week with the help of the local charity and I still see the volunteer and worker that both helped me in my worst times.
I just hope this helps raise vital awareness about mental health. There shouldn’t be any taboo or stigma surrounding it. So if you have any problems, look to turn to family or friends, and if that isn’t possible, there are plenty of charities and phone lines that can help. Just Never Give Up.