I recently came across this YouTube video by The TryGuys;
(contains some swearing – just in case you’re watching with kids)
If you’re a fan of The TryGuys you will know this video is a little different from their typical style, yet its a very sincere vlog from Zach who is updating us on his auto – immune disease, ankylosing spondylitis.
You make be thinking, ‘ an auto – immune disease and epilepsy are very different things’ but as Zach gives his brave and heart-felt talk about embracing his invisible illness, I believe we will all be able to relate and empathise with his situation, and from a personal level, it appears that we had both dealt with our diagnosis’s in exactly the same way.
Zach explains how initially he always did the right things for his condition, he was feeling better. However, life took over and he admitted he got a little lazy and the perfect health didn’t last.
“…as the weeks went by, a nagging discomfort, then a pain. I was distracted, I was upset. I was back to where I was eight months ago. I was in pain all the time, but still with all that evidence screaming in my face I was…not accepting my own reality…The truth is I started ignoring my disease the second I could. The moment my medicine started working I stopped paying attention to it, I stopped researching it, I didn’t want to know more about my AS because the more I learn the more I would have to accept it that this is now a part of me.”
Those words resonated with me because I had reacted in the same to my epilepsy.
Although I understand how complex epilepsy can be, I began to wonder how many have been in a similar situation?
Experiencing good health resulting in a laid-back attitude to your wellbeing, believing your fine, only to be bitterly upset when you become unwell again? I know I have.
And how many have had trouble accepting your diagnosis, knowing that epilepsy is now a part of your life forever? I know it can take years.
I can remember those early hospital appointments, the new meds, I was doing all the right things and to the outside world I appeared to openly accept it.
My seizures can be affected by stress and fatigue and I ignored the warnings – for weeks. The late nights happened, I over worked myself and I would wake up in hospital, and it would happen over and over while I continued to ignore the warnings, missing medication, striving to have a ‘normal’ life but I couldn’t, I had epilepsy.
I was also afraid to even talk about epilepsy at one point, that’s how much I didn’t want to accept that it was a part of me.
Obviously we know this changed and I am incredibly glad it did.
I won’t spoil any more of Zach’s video because I think it’s really worth a watch, I hope you enjoy it as much as I did and find comfort in the fact that you’re not alone, there are people everywhere who understand your situation and what you’re going through even if their lives are slightly different, and the most important thing is that there are so many people around who are keen to help you if you are struggling or feeling lost.
I felt lost for too long after my diagnosis, and bottling things up never helps.
Don’t forget, you’re always welcome to send me a message!
(The other TryGuy video’s are great too!)