My diagnosis of epilepsy was a shock. I didn’t understand how I could have such a condition and insisted that my doctors and neurologists were wrong. I’d only ever saw seizures on television and across social media of tonic-clonic seizures – was that really me? Having just turned 18, a life changing condition was not what I had in mind. Over time I realized that ignoring my epilepsy was not the answer and I slowly began to accept it. 3 years after my diagnosis, I was becoming really frustrated with those around me that didn’t understand. I was being bullied, discriminated and felt as though it was me against the world. I chose to create a video about my epilepsy, showing viewers the problems I faced but in a lighthearted way. Just because I have epilepsy doesn’t me it defines me – I’m still a person! 2 years later, louiseglover3 at Upon A Sunshine is still online and I continue to connect with new epilepsy warriors every single day.
I’m proud to have taken a step into the unknown and enter the world of YouTube. It’s still sometimes scary to post a video online for the world to see, but I continue to do so to help those who feel alone, who need support, who need to be reminded that having epilepsy isn’t a shameful condition. I’ve been lucky enough to have raised funds to VLOG my travels to America where I met other epilepsy warriors and advocates. During my time in New York, we walked across Brooklyn Bridge wearing
purple to raise awareness. Meeting the group was incredible. There was so much love and passion. This love and passion is a common theme you’ll discover when you meet epilepsy warriors and advocates. We are proud to be who we are.
I have met some wonderful people who said I have empowered them to speak up about their own condition. I honestly think this is fantastic. It just shows how strong our community can be when we realize we’re fighting as a team. For anyone that is thinking of starting their own YouTube channel, I have a few little tips for you:
Although it can be strange talking to yourself in front of a camera, just relax. You want your viewers to be able to engage with you and relate to you.
Be passionate – you are starting a YouTube channel because you have a passion/interest in something and that’s amazing! Remind yourself why you’re filming your next video – is it a part of your interest? Viewers will subscribe if they can connect and relate to you and they can only do so if you’re passionate about your subject.
Engage and talk
If you’re starting a channel because you’re advocating, congratulations! Get in touch with charities, organizations and other advocates to connect. If I’m posting an epilepsy-related video, I’ll nearly always tweet Young Epilepsy and Epilepsy Action. This is because these are two of the biggest epilepsy organizations based in the UK. Connecting with other bloggers has not only created better awareness but friendships too! Talking to organizations such as Young Epilepsy has given me the opportunity to attend their annual Champions Awards where I’ll meet many epilepsy warriors, bloggers and health professionals. It’s an amazing event and always reminds me why I love being an advocate for the condition.
Over the past 2 years, I have learned that it’s a lot of work to keep everyone up to date with new videos, editing, replying to emails, researching and tweeting my followers as well as living my everyday life. And we haven’t even scratched the surface of maintaining my health! I will usually auto-schedule tweets and reply to emails every other day. This gives me a chance to stay away from social media and look after my body, my epilepsy, and my mental health. If you don’t have a plan, everything will eventually pile up and you’ll crash!
Enjoy every single moment – you’re creating a YouTube channel because you’re passionate about engaging with others. So keep doing what makes you happy! You got this!
Upon A Sunshine is my own platform to remind everyone that despite the lows of a condition, there is always positives. And it starts with you.