My fiance and I spent the most part of January this year driving and camping around New Zealand’s North & South Islands, generally without wifi, and it was honestly pure bliss. We of course sent messages to family and posted the odd photo of our travels on Instagram, but other than that it was just us, our tent, our tiny hire car and our cameras.
As a result, we spent more quality time together in those few weeks than we have done over the last 4.5 years of our relationship; talking, laughing, being active outside and enjoying nature – snorkelling, kayaking, wildlife watching, hiking, exploring Giant Redwood forest, swimming under waterfalls, zorbing, caving, going for long drives on open roads with the windows down, stargazing with the clearest night skies I’ve ever seen (with a campfire and Sauvignon Blanc)…it was the happiest and freest I’ve felt in years.
It also put a few things into perspective for me upon our return home – partly about some of the things I’d been incessantly worrying about before the trip, that were actually either completely out of my control or not worth losing sleep over…but also to how stressed, anxious, inferior and drained social media had been making me feel.
Now, I do believe that social media can be an incredible tool – it has the power to educate, raise awareness, garner support for important movements, market products and tools…the possibilities are endless. Specifically within the world of diabetes, social media should unite us, provide peer support, improve the relationship between us diabetics (sorry, “people with diabetes”) and HCPs, highlight new research and products, and promote and report on conferences and events. Social media should do all of those things – but it doesn’t always deliver.
As with many things, social media can also be highly flawed. Speaking from my own experience, it’s far too easy to become consumed with constantly checking our platforms for fear of missing out on a ~vital~ piece of news. Push notifications give us a misguided sense of urgency, and receiving notifications for every single like/retweet/mention/share/DM we get makes it nearly impossible to keep up with everything – or at least, the things we really care about. The constant urge to compare ourselves to others (or the version of others that we perceive from what they choose to show online) can leave us feeling as though what we have/do/are isn’t good enough, and comparing the number of likes/retweets/mentions/followers we have with others can leave us feeling inferior.
It’s also felt as though tensions have been mounting within the diabetes online community for some time, and what once united us now seems to be dividing some. In my (probably unpopular) opinion, there is a definite sense of not being able to say anything anymore without someone seeing it as a deeply personal attack or taking offence – I often feel as though I have to add some sort of disclaimer into every post I write now, so as to try to not inadvertently upset anyone or have my thoughts be misconstrued.
If I post a photo of a relatively straight line on my Freestyle Libre, someone will accuse me of only posting about the positive days and giving others a false impression. If I post a photo of a terrible day’s graph on my Freestyle Libre, someone will accuse me of being poorly-controlled and not taking my diabetes seriously. If I post about the Freestyle Libre in general, someone will take offence because not everyone has the ability to access technology – which is of course a hugely important issue to me, but I refuse to be made to feel guilty for using something that I can barely afford to fund myself anyway – and certainly not all the time.
If I post something positive about mental health or my recovery from an eating disorder and diabetes burnout, I’m accused of being “too positive” (I fail to see how that is a bad thing in any circumstance), false and unrealistic. If I post honestly about struggling with something, I’m accused of being too negative and pessimistic. If I talk about being frightened of future complications, or my own complication worsening, some see it as a personal attack. If I were to post about the thought of complications not phasing me in the slightest, I am certain that I would again be accused of not taking my diabetes seriously or of being insensitive to others who do worry about complications.
If I post something about how I don’t necessarily believe that extremely low carbohydrate diets for young children with Type 1 are the best idea (which is clearly just my own personal opinion, as I’m not a parent and I’ve never claimed to have any medical knowledge), I’m accused by some of attacking their parenting, or (it gets better) of “not wanting the best for children with diabetes” (ouch – I was diagnosed at 2 years old myself and long before today’s technology became so readily available, so I’m fully aware of the struggles of being a Type 1 child). Similarly, if I post something about eating a high carbohydrate meal or something that made my blood sugars spike, I’m accused by some of being an “irresponsible diabetic”. You do you – if it works for you, great, but that doesn’t mean it will work the same for everyone.
It’s exhausting, and at times it’s made me question whether I even want to be a part of the DOC anymore, or whether I should just give it all up. Everyone is entitled to their own opinions, but that doesn’t mean we get to be rude or disrespectful towards/about one another just because someone’s opinion differs from our own.