A few thoughts on how to get the most out of using online resources to help you manage your diabetes, by Mike Kendall. The website www.t1resources.uk exists to encourage more people to access the support and help which is available online.
The vast majority of people who you ‘meet’ in the diabetes online community are lovely, friendly, helpful types. Living with diabetes can be a very lonely, frustrating experience and it can really help to compare notes with people who instinctively ‘get it’, but you must always bear in mind that you don’t actually know anything about any of these people. Whether they have any of the expertise and experience they claim to have. Always, always, always treat everything you read online with a pinch of salt. And it is safest to always check with your doctor, nurse or healthcare professional before making any changes to your diabetes management.
‘Your Diabetes May Vary’ is a fundamental principle of the online diabetes community. Just because something works well for one person does not mean that it will work the same way for you. Be particularly careful if people start confidently throwing numbers around for doses and corrections without first knowing a lot of detail about your current diabetes management and explaining their reasoning very clearly.
What to share
How much you want to share is entirely up to you, there is much to be gained from simply reading and observing many of the links on this website. However, many people get the biggest benefits when they begin to interact with others online, asking questions and sharing their own stories and experiences. These interactions are about your health and could involve some very intimate information, so it is probably best to be slightly cautious. Only share things that you would be happy to tell a stranger you had only just met at a party.
Many social media channels allow you a degree of anonymity by choosing a username and/or profile picture which does not identify you. Do be aware though that even relatively anonymous accounts can build up a picture of a person, especially where details are shared across several channels. Additionally, you should be aware that even private groups and forums which require a log-in to be viewed are still relatively public. It is usually best to behave as if everything you post online could eventually be attributed to you personally.
It is unfortunate to need a section covering this but bullying (and other unpleasant behaviours) is a subject that cannot be ignored. Some people, for whatever reason, do seem to actively seek out conflict and argument online and choose to use the relative anonymity of SoMe (social media) to behave in a way they would never do in real life. The situation is made more complicated because online we do not have the benefit of body language and facial expression to help interpret the tone of voice of a message. A hurried reply might come across as abrupt or aggressive and something meant to be read with a knowing smile and twinkle in the eye might be read as spiteful and sarcastic.
Additionally, you should always make sure that any contribution you make is polite, helpful and supportive, even if the people you are connecting with seem to be going out of their way to annoy you. Never post anything which you would not be happy saying in person to your grandmother/the queen/whoever you instinctively would not want to offend. Many disagreements online are simply misunderstandings. Remember that you never know what is going on in someone else’s life at any one point. They may be under stress, or angry or upset about something entirely unrelated to their interaction with you or have a particular vulnerability or sensitivity to something being discussed.
It is also important to stress that deliberate cyber-bullying is very real and can have a devastating impact. If you feel you are affected by this issue at any time, never retaliate. Instead, use the ‘block’ and ‘report’ tools available on the channel in question and raise it with moderators if appropriate. For more details on cyber bullying, CLICK HERE.
Ultimately, remember that you are doing this to make living with diabetes slightly easier. If your social media interactions are making you sad, upset or angry; if your use of these resources is making you uncomfortable, or you think it is having a detrimental effect on your state of mind: STOP.
This article was originally written for www.t1resources.uk and is reproduced with permission and with thanks.