Lockdown diagnosis
Lockdown was still imposed and from Thursday to Monday, it was just me and my mum against the world, except occasional family FaceTimes, alone on the high-dependency ward. It’s an experience that’s ultimately unique to every person living with type 1 diabetes, and it’s through these personal stories and anecdotes, that we come together as a community of autoimmune warriors to fight a condition that affects very few people worldwide.
And yet having just one person to talk to, who understands the very literal highs and lows of having diabetes can make it seem like it’s the most common condition there is, and take away the burden of being alone with this disease.
Connecting with others
However, it was glaringly obvious once leaving hospital, that there was no platform for us type ones. After the lockdown ended, my mum went back to teach at school, and I was left alone. Alone like I’d never been before. Although I had a family I could speak to, I had no-one who I could sit and talk about my diabetes with, no-one who could truly understand.
Promptly, on the 8th March, a month after leaving hospital exactly, I uploaded my first TikTok video, and I’ve been doing that ever since.
My videos quickly gained momentum and I was given the FreeStyle Libre 2 system just weeks after diagnosis.
Glucose alarms for peace of mind
Like most concerned parents of a type one, my mum set the alarm for 03:00 every morning, she’d hurry on in, wake a very disorientated me up from a lovely sleep, and force me to prick my finger. Every. Single. Night.
That was until the FreeStyle Libre 2 system offered me the optional glucose alarms◊ which meant we could rest easy; the word ‘we’ here makes it seem like it’s just me and my mum with the alarms, it’s not. My aunt, sisters, dad, grandad and nan, all have the alarm§, and for the first few weeks, they looked like skeletons in the morning.
Nervously, I began college in September and recently sat some mock exams. Luckily, the alarms on the FreeStyle Libre 2 sensor meant that I would be alerted if I was too high or low in the exam. This relieved the pressure of having to fingerpick every half hour or so† in an already stressful situation, proving itself as a very important friend for students like me.
Education and support
My most viewed video on my TikTok page, with 54 million views, is a video of me changing my FreeStyle Libre 2 sensor, and through this incredibly diverse audience I was able to see just how absent type one diabetes general knowledge is. With every uneducated comment, I felt the need to tackle this supposedly unintentional ignorance around the condition.
Amazingly, what started out as a way for me to connect with other people living with diabetes has transitioned into a community of 280,000 supporters who are empowering each other whilst simultaneously inspiring and educating other viewers who perhaps aren’t savvy about diabetes awareness.
It’s just been my one-year anniversary, and although I have type one diabetes mellitus, an autoimmune condition, my life has never been sweeter.
Johnny Bailey is a FreeStyle Libre ambassador. You can follow him on TikTok @johnnyalanbailey and why not have a listen to his podcast where he chats to Consultant Clinical Psychologist Professor Deborah Christie about transitioning from paediatric to adult diabetes care services.
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