I've been a vocal advocate of peer support within Diabetes for a long time. It would be strange, in my position, to not be. The list of support, help and friendships offered to me has been incredible and I'll be forever grateful.
Alongside my peer support gushing, I have been deliberate in my attempts at trying to warn others about the potential pitfalls of engaging with peers within Diabetes circles. The ugly side of peer engagement rarely sticks its head above the parapet fortunately but it is there and as more official avenues of care begin to recognise the positives of peer support, I think it is very important to have a firm safeguarding and vetting procedure in place to at least minimise, if not eliminate, the possibility of damaging engagements between people living with Diabetes.
The Internet is a wild place. Anybody can create accounts and spout all kinds of hate, extreme views or health damaging advice.
"He's clearly not using the technology correctly..."
"Perhaps his grocery bill would be lower if..."
"The truth hurts" - A personal favourite of the peer judges.
Those three came from one person, a person who lives very locally to me and who (at the time) was claiming to be an active volunteer for Diabetes UK. He wasn't a volunteer, of course and it became apparent that he had aired his views about others' Diabetes management across social media resulting in various bans and outrage from other peers.
I think the great thing about Diabetes Twitter is the unquestioning welcoming and support of new people. I hope that remains because we were all newly diagnosed and frightened, once. I hope that remains despite the recent welcoming of an individual who claimed to be a student nurse, recently diagnosed with T1D. Tonnes of love and support from various quarters arrived in his life. At the same time his true colours became apparent. The colours of a racist, ableist, liar. The Twitter community noticed and large numbers were quick to express their displeasure before turning their back on that person.
This week, I passed the two month mark in my pumping journey. It's been great and I felt very encouraged by the real life changes as well as the improved numbers. I tweeted my numbers for a comparison to my life as a Diabetic on MDI. Much positivity followed until this reply:
"So clearly not worth having such an unsightly pump?! What gets to me is how damn ugly & unsexy all related to diabetes is!"I did reply, later on but when I read that response I was angry. I was angry for others more than myself because I'm a man in my mid 40s and, after living a life with disability, I am almost numb to hurtful comments. I was angry for the newly diagnosed, the children, the impressionable, the low on confidence... I can't imagine how the teenager felt, after starting pump therapy recently, once they had read that response. How would you have felt? So, I didn't reply immediately. I retweeted the comment and invited others to share their views. It's a few days later, now and their tweet is still attracting replies. I think that underlines the strength of feeling and the general dismay.
What does pop up occasionally, if I've highlighted something which is horribly offensive, discrimination or possibly damaging to the health of others is the old "They're allowed an opinion" response. Sometimes dressed as freedom of speech and sometimes with a heavy hint of accusation with a #ThoughtPolice hashtag. Here's the deal; If a person responds to something you've done or said with words that express offense, that they feel discriminated against, that they're worried your words or actions could be damaging, then it's probably not for fun. It takes bravery for a person to call out these things. Then it's down to you to take a breath and consider if they have a point, was it a misunderstanding you can clear up or do you need to re-evaluate things? Perhaps even apologise!? I think everybody should be free to express themselves if that expression is not going to cause distress or damage to another person or persons. That would seem to be a reasonable, kind way to live and engage with others.
Words which struck a chord with me came from Dan Newman (@T1D_Dan) when the subject of harassment came up during an online conference. Dan said that if you read something which you don't like then simply block that account. He's right. You're not obliged to respond to anybody and your only duty on social media is to that of your own well being. You may be questioned, I certainly have been, about why you've blocked X, Y or Z. You don't owe any explanations to anybody. Do all your social media in a way which is comfortable for you and not others.
It seems that peer support could be a part of your Diabetes care through the NHS in the future. To the decision makers, the leaders, I encourage you to tread carefully by vetting each person you enlist, reading their social media and asking others for thoughts. If you offer somebody a job then you ask for references, don't you? and to everybody else online or otherwise; Stranger danger.
Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!
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