We’ve all been told we’ll grow out of something at some point in life right? Maybe you bit your nails, ‘don’t worry oh you’ll grow out of it’. Or you really loved McFly when you were 12 and were told it was a phase (guilty)! But what do you do when the years tick on past and you don’t change for the better?
And this’ll last how long?
I had what looked like a faint when I was 17 which then turned into several ‘faints’ which evolved into seizures. I was told from the very beginning that I’d grow out of it but today I’m ‘celebrating’ Ten Years of living with Seizures!
It was never even considered that my condition might be for life. It’s not technically epilepsy but I take epilepsy medication to help control the fits (go figure)! I’ve been through different neurologists and cardiologists who all just say ‘well we don’t know what it is and you’ll have to live with it’. As I got older I unfortunately developed multiple other chronic illnesses which i’ve now thankfully got the confidence to properly push for investigation into.
Learning to Deal
The confusion I felt when I first became ill was intense. Over the years this became anger, grief and now something that’s almost being at peace. I’ve heard similar from a lot of chronic illness sufferers.
I had a lot of options to quit thing and let my health rule my life and i’m so grateful I pushed through. To people who have conditions developing and aren’t getting answers, ask, shout louder and look into the community for support when doctors aren’t coming through for you.
When my seizures began, my teachers didn’t think I was going to get my a-levels let alone a degree. My doctor advised I took a year out and delayed uni, but I couldn’t just sit there and watch life pass me by. University was a repeat with struggles and being suggested to drop out again! Disability help exists throughout life, but dear god is it well hidden!
When I finally got my degree it felt like I’d run a marathon. I regret pushing myself quite so madly but I don’t regret that I made myself stick it out. It seemed to be ‘me vs my health’ for the longest time and I couldn’t bear to lose. I carried this mindset into applying for a graduate scheme which I completed but eventually had to begin full time working remotely.
2009 vs 2019
I now know it isn’t ‘me vs my health’, my health is part of me, and I have to respect that and not fight it. I’ve learnt you sometimes have to shriek for support, and that some people and places sadly aren’t willing to deal with health restrictions.
Learning to rely on others and accept my own limits is a lifelong journey but I think i’m getting there. I’ve been incredibly lucky to have a wonderful array of people in my life who don’t just see me as a disability, and are happy to do things with me. I have a partner who must have the patience of a saint dealing with me, but who loves and supports me with everything. My Seizures still aren’t understood and I have no known reason for them. My current doctor thinks a lot of my health conditions are related so we’re looking for what that link could be!
It’s been rough and I’ll always wish I didn’t have seizures, but they don’t define me. Nor does any of my health. It’s just a shame it was so hard to get it all taken seriously in the first place.
To anyone not being listened to with a diagnosis, shout louder – you, like me deserve answers!
Until the next time,
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