I think I probably see at least two tweets a day with links to articles or blog posts singing the praises of the digital detox. Generation Y- the people who have a smart phone in their hand while in bed, in the bath or on the toilet (you’ve all done it). We use social media too much apparently. We stare at our glowing little screens for too long. We’re obsessed with other people. It’s bad for our mental health. It’s bad for our self-esteem. Probably all true to a degree.
I use my phone too much. I went to college in the rise of Facebook. I did journalism as a degree when the digital age was starting to thrive and print magazines were starting to die. “Sign up to Twitter!” “Start a blog!” “Learn about SEO!” I did a module at uni that required everyone taking part to set up a blog. This was 2010, and the first time I delved into WordPress and started getting my head around tags and catergories or trying to think about content someone- anyone at all, would want to read. Then I graduated and forgot my password.
Fast forward two years and I was in my first permanent job after uni, doing some web stuff, learning all about diabetes and dipping my toes into digital marketing. Oh and I also had crippling pains in my shoulders when I breathed and was waiting on endless referrals and seeing endless physios and rheumatologists and puzzled cardiologists who couldn’t work out what the sudden deterioration in my physical health was.
I just assumed it was something wrong with my joints and that some physio would probably fix it, but the longer it dragged on and the more symptoms that appeared, the more confused I got. Anyway, finally, months later and after one partial hip dislocation, I got a sort of diagnosis. “You’ve got a rare disease that we don’t know much about and we haven’t got the testing right yet, but you’ll be okay for now asking as long you don’t keep dislocating things and become immobile.” Okay so I’m paraphrasing, but that was the gist of what I got told, because there really isn’t much known about JHEDS- Joint Hypermobility Ehlers Danlos, to be precise.
Jolly good, I thought. I’ll just erm, go and continue life while my joints fall apart and wait for the day some lengthy research is finished so I can Google it?
I tried to do some research, typing in random words doctors had said and even turning to those live chat forums where an alleged doctor answers you. Like, who are these people? Why do they all look like stock image models in their photos and are they really there? I have some serious doubts, plus one chat led me to being told perhaps I ate too much food colouring. Legit, I’m sure.
Around about that time, my colleagues started receiving requests from the local council for us to contribute to their blog. The task fell to me and after writing a bit and delving back into blogging, I started to wonder if there was a blog out there for everything…and every health condition. This is the internet, where you can see micro-pigs ride around on turtles, surely there was something that could help me. It took less than hour to find several blogs that told the stories of patients who’s joints were breaking, bodies were bruising and limbs were hurting. You know in films where something falls into place and a light shines down like angels are using a torch or something? That was me, right then.
There were people all over the planet, not loads but some, writing about the same sort of condition that I had. People who actually understood, who hadn’t got the right answers from doctors and who had advice I could take on board. They knew how it felt. This also led me to discover the phrase ‘not rare, but rarely diagnosed.’ I was not alone, which was nice to know.
The blog discovery flipped a switch and I started searching Twitter. I found people who tweeted about connective tissue disorders. Imagine loving reality TV and selfies and drama more than anything and discovering the Kardashians for the first time.
It became clear that I needed to join this community. I wanted to do health communications/marketing as a job, and I needed support for my own health, as anxiety and stress was making me feel even worse than the pain. I needed the virtual pat on back and look of understanding these Twitter accounts could offer me. So I started blogging. I started tracking down people who had the same condition as me, or similar, and tweeting them. I sent them, very nervously and after much deliberation and hovering, links to my first blog post.
Looking back, I got a pretty overwhelming response. People were so kind. People offered me advice, shared their stories, read my writing, shared it on and suddenly I had more Twitter followers, people were subscribing to my blog and I felt about 99.9% less lost and scared than I had several months before, leaving hospital appointments with just words and confusion.
To this day, the online community of rare disease sufferers, chronic pain fighters and fellow connective tissue lackers make me feel better. They make me feel confident I’ll get through bad days, they educate me and they give me a connection to people who understand how I’m feeling. There’s a line though, as sometimes too much information, perhaps not specific to you, can cause more anxiety, so I try to digest just the right amount.
It might not be ideal that we have phones glued to our hands and share everything we eat and wear on Instagram, but social media and blogging helped my health in ways I can’t even measure.