Friday, 2 August 2019

Using social media for good; chronic pain, invisible illness, mental health and MORE!

I am so thrilled to be giving a teeny talk at a social media workshop held by The Brain Tumour Charity today; it’ll be great to share my wisdom with the Young Ambassadors and the rest of the team – also, let’s face it, social media and that brilliant charity are equally enormous things in my life, so put the two together and OOOFFTT.

So, here’s what I plan on saying at the offices in Farnborough (we’ll see if I actually manage to deliver it coherently)…  I’m calling this little presentation ‘The Importance of Using Social Media for Good’


(Photo taken by Mama)


What have I done with social media? 

My social media platforms and blog have always been a personal space for me; a medium to not just get my voice out into the world and hopefully have others tune in and learn a few things, but to also be my therapy in a lot of ways. Every time I’ve gone through something, big or small, exciting or terrifying, easy or hard, I’ve wanted to write about it for myself first. I started my blog, and got Twitter, back in 2009 (?) kind of time, because I had a lot of thoughts and feelings in my head and was seeking the perfect place to let them out and hopefully, ultimately, be rid of them. I didn’t really think about these two platforms being public spaces (and easily accessible by my friends and enemies) until I was confronted by a bully who had read what I’d written and recognised herself in it. Then I started being more careful about what I actually published for all to see, but didn’t let it stop being my happy place and most therapeutic exercise. 

My brain tumour diagnosis in 2014 obviously was something I immediately felt a deep need to write about. That was my first thought; I must write all this down, for me, just to get it all out and make sense of it, too. It was really just a perk that the blog post circulated around my friendship groups, family members and beyond, and proved to be the best way I could have told folks what I was going through (because it’s hardly something you want to put as a little Facebook status or 140 character tweet, is it!?) without having to ring doorbells or call everyone I loved and wanted to know one by one with the news. 

As I said, the first post about my very dramatic health situation circulated, and ended up reaching a LOT of people. It’s still one of my most viewed blog posts, 5 years later (with 4,200 individual views, or ‘hits’, and counting). This spurred me on to write more about it, because while it was first and foremost my therapy and outlet, it was helping others understand and accompany me on my journey – from a distance. Not long after my first op, I was put in touch with The Brain Tumour Charity through a friend, and this led to a lot of collaborations (blogs, vlogs, articles, general social media sharing and promoting, my time as a Young Ambassador and acting in not very cheery campaign videos), and I felt really happy to be using my fast-growing channels for good, as well as for me. 

It’s so important to use your platforms to help others. A lot of celebrities get stick for not speaking out about politics, environmental issues and LGBTQ+ humans – Taylor Swift being an example, who came under fire for not appearing at women’s marches in New York, promoting eco-friendly living or saying anything about the new POTUS… but she’s now publishing open letters to politicians and statements about campaigns on her Instagram account, and her latest video for her single with lyrics about the evils of the online world featured some incredible LGBTQ+ icons and influencers, all of whom sang her praises on their social media channels for being a helpful ally and friend of their communities. 

Coming back from Taylor Swift (oops) to this important cause, being researching into and raising awareness of a very common but rarely spoken about illness, brain tumours – maybe all of you think about the ways in which you can use your social media spaces for good, and what can be done maybe within the charity to help us help them! 


(Photo taken by Mama)


I’ve made a list of influencers/bloggers/vloggers who use their platforms to talk openly and help others with invisible illnesses, chronic pain, mental health and so much more on my blog for you, but if you wanted to grab your mobile devices maybe and look them up, or just make a quick note of names, here are some of my favourites... 

  • Lizzie / Hux (@littlehux. Shares online about being autistic and non-binary. They have also edited actual books about anxiety and different kinds of bodies at 3 of Cups Press!) 

Also, shout-out to all my Twitter friends who sent me more profiles, channels and blogs when I put out a tweet asking for more folks to follow and share here! Yet another reason Twitter can be such a positive space. (you just need to get past all the Trump voters, fox hunters and Tories) 





Here are some of the recommendations I got… 

  • Chloe (@chloeltear. Disability blogger living with Cerebral Palsy, Amplified Musculoskeletal Pain disorder, and chronic fatigue. chloetear.co.uk
  • Cherry Rae (@cherryrae. ‘Reluctant human and actual cyborg’. Living with Autism and disabilities. Fighting for more representation and inclusion in the gaming world. cherryrae.com)
  • Jake (@jakesidwell. Living with Postural Tachycardia Syndrome, aka POTS, sharing some of the most painful moments online. Beautiful music on Soundcloud)


Whew. I'm pooped now.
Got any more for me? 
Comment below, or hit me up on good old social media! 

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