I think when you’re diagnosed with a long term health condition, you begin to look at the world around you in a different way. The people that care and look after you are so selfless and supportive through your struggles. The things that you used to take for granted become something that you’re so grateful to have and you now cherish. Amongst all the positivity comes the negative… sometimes we can forget that millions of others are fighting the same battles as us. We become so isolated and feel so distant from the person we once were. Little do we know that we are still us and our condition doesn’t define us. It takes acceptance.
I created my YouTube channel as a way of expressing myself. I knew I was strong but yet others thought very little of me. Apparently my condition made it impossible for me to live a normal life, to have a family, to be successful. Accepting my condition was difficult when I was surrounded by negativity outside my home. We live in the world of social media, so through my difficult days, I would seek someone that understood how I felt. I would search on YouTube but would find videos that made me cry and made me feel so alone. I wanted to know I wasn’t alone by finding others that had accepted their condition, but I had no luck. I took matter into my own hands and began my channel. I was so nervous posting that video, and still today I worry that I’m going to offend someone or I’m not pretty enough like all of the YouTube stars. But I remind myself that it’s not about my looks and worries – it’s speaking about topics I feel strongly on. Not everybody enjoys my content and that’s okay. Not everyone wants to see the “funny” side of life and of a long term condition. But I’ll continue to create these videos if it helps someone that was once me seeking comfort in their new daunting diagnosis.
Social media has it’s positives and it’s negatives, but without it, I would have never met such inspirational warriors. I would never of had the chance to fly to New York City and raise awareness of epilepsy with incredible Americans. I would never had the confidence to prove everyone wrong and travel to South Africa on my own. I would never have stepped out of my comfort zone. And going back to social media, I would never of had the opportunity to meet my fellow advocates who run a support group on Facebook. This group is incredible. When I think back to my diagnosis and struggling alone, I wonder if I would have accepted my new lifestyle a lot quicker if there was this group. There are warriors all across the world who support one another, who share stories and heartache to everyone. This group has become a place where I go to if I’m having a bad day. I co-admin this group, alongside incredible strong women. We have accepted our condition and are happy to speak up against the negativity epilepsy warriors face everyday. Through my videos, website and Facebook group, I have my own platform of support.
I’ve been diagnosed for over five years now and I’m still shocked about the people I speak to in person and over social media. We come from all different backgrounds, cultures, speak different tongues, we have been diagnosed at all different ages and have completely different seizures and side effects. But at the end of the day, we still continue to support one another. It shows how powerful love is. It shows how strong we are to continue fighting our own battle and help others at the same time.
I will always hope that there is more education around long term health conditions such as epilepsy. I would like to think that we’ll one day have a cure too. It’s quite scary how common seizures are yet how little people know of them or know what to do in an emergency. So until there’s more education and a cure, I will continue to raise awareness myself and stand with every one epilepsy warrior who is fighting their battle. You’re not alone.
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