I’ve had my autoimmune disease since the age of four (2006). Since I was little my mum has used social media to connect to other patients and get information, because my disease is rare there wasn’t very much out there. But she found a small group of about twenty people on google hangouts, which has now transferred to Facebook and has 2,500+ members! She would share updates for family friends and patients on her Facebook, learn more about my disease and what to expect from the patient groups. Over the years those other patients became peers for me in spite of them all being older and living all over the world.
At 12 I took over this account and started to share my updates myself.
I also began using instagram because it was cooler, and had people more my age. I share things about my health, hobbies and adventures – the everyday, normal things. I connected with others my age who also had health issues as well as other cool people. Having these communities has seriously helped me and my family so much.
As my health declined this community literally saved my life. Imagine being fourteen and your health is falling apart, you’re loosing yourself, your hopes and dreams and all of your abilities. I was already emotionally fragile so this seriously hit hard. I wasn’t able to go to school, have fun so I used social media to distract myself and gain support. This was such a big help to me. I felt trapped and lost but these friendships have saved my life. Not only the emotional support but being treated normally and like I’m not breakable, someone to chat to at 3 am not just about your pain but about the news or Netflix. I’ve got someone there for me all time, the world in my hand.
People talk about how bad social media is but it just depends what part of the internet you are on, and how you are using it. I use it for support. To learn. Not just to troll and look at pointless celeb gossip that makes no difference to your life. Mind blown? Yea I bet. The internet is an endless source of resources which can change your life. Not just the how to videos on YouTube but the international relationships we are able teach you so much. Engaging with good media makes the internet a whole new place. When you’re not just seeing thin pretty white girls on beaches, not just on twitter looking at trump being stupid, reading stories which teach you things it is so different! As someone mostly bedbound you get trapped. But the internet opens the whole world up for me. People don’t realise how much of a positive, or negative (I’ve had both) impact it can have on you.
See my social media
Insta: @morethanaspoonie @youngpeople_chronicilnesses
Facebook: Niamh’s nmo
Blog: morethanaspoonie.wordpress.com (you can read my chronic illness story there amongst other more organised long form posts)