I’ve been around Twitter for while. I joined up in a personal capacity almost seven years ago, although I probably didn’t really get going for a couple of years. I became “@BipolarBlogger” somewhat later, when this blog got going in summer 2011. Since assuming my new identity I’ve watched the #mentalhealth community on Twitter grow and grow. A couple of years ago I chatted mainly with other services users, carers or staff from mental health charities. That was great, and I learned a lot, but increasingly I now see service users interacting with mental health professionals in multifaceted debates about the issues that affect us all.
I’m really encouraged by the degree to which people are opening up and collaborating to build a genuine online community. Yet some participants continue to behave in ways which undermine mutual sharing and support. Some of these people steer very close to being trolls, in which case I don’t think there is much to be done other than ignoring their behaviour. In most cases, however, it looks like people just aren’t thinking through what it means to build and sustain community links in text. So, from a Twitter veteran with [cough, cough, cough] number of tweets under her belt, here are my key pointers for participating thoughtfully and safely in the world of Twitter mental health.
Listen with your eyes. OK, you can get all primary school on me and sing a rainbow too if you want, but please (unless you are a text recognition software user!) listen with your eyes. There is no real difference between somebody opening up in a face-to-face conversation and opening up on Twitter. Both take courage, a risk that maybe you’ll scoff, maybe you won’t understand. If someone tweets that they are so incapacitated by mental health symptoms or medication that they cannot leave the house, take that as understood. If they tell you they can’t concentrate and they’re feeling frustrated, absorb what’s just been typed. If you’re tempted to tell the first person they should go out for a run or the second they should watch a film or read a book, you’re not listening. You’re not honouring their current lived experience, so don’t be surprised if the person clams up or leaves the conversation. If you’re struggling to understand where they’re coming from, asking gentle questions is almost certainly going to be more helpful than making unfounded assumptions.
Needs are mutual. Remember that most people who give others support within the mental health community are struggling too. It’s important to be reciprocal, to recognise that just as your condition fluctuates, so do those of the people you at times lean on. If you want one-to-one support on something with immense emotional weight, it’s only kind to check that your chosen support buddy can handle that weight before you hit that “tweet” or “send message” button. Are you confident they can cope with hearing your thoughts right now? Do they have the resources to read your messages without being triggered? Mutual support works best when people take a moment to ask one another whether they are able to offer that kind of support right now. If you’re tweeting in your general timelines about highly emotive issues such as abuse, suicidal ideas or self injury it’s both humane and polite to start your tweet off with a TW (trigger warning) so that people have the choice to read your tweet or let their eyes slide past.
Lay off others’ labels. If someone doesn’t identify with their diagnosis, that’s not your problem and if they won’t accept their clinicians’ views on why their diagnosis is right, they’re hardly likely to welcome yours. Conversely, if people identify strongly with their labels, it’s not helpful for you to push your dislike of diagnostic categories and/or psychiatry in general. If it works for someone to see themselves as between or outside diagnoses, great. If it works for someone else to take on their diagnosis as part of their identity, great. It’s about respecting what works and what feels right for them – even if you disagree.
Don’t meddle with meds. Fact: other people’s treatment plans aren’t your business. Are you tempted to interfere? Do you find yourself wanting share unsolicited advice about how terrible or excellent a particular drug is? Do you think it your duty to tell somebody that they are on too many drugs, too few drugs, or the wrong combination of drugs? Do you offer “consultations” by direct message even though you are not a doctor? Do you find yourself desperate to persuade people that their drugs are toxic? Do you want to offer miracle cures, based on diet or homeopathy or “ancient” (and expensive) “Russian healing arts”? Don’t. Don’t, don’t, don’t. Nobody but a person’s own prescribing psychiatrist knows their full medical history and without that complete background plus the right qualifications nobody has any business meddling in another’s med regimen. This is quite different however from offering information that has been asked for. Telling your story of drug X to someone who’s asking for others’ experiences is completely reasonable. But unless you’ve been invited to discuss the topic – leave other people’s drug treatment alone.
You are not me. It can be tempting to think that because someone shares our diagnosis we’ll automatically have common experiences, and that what works for us will be bound to work for them. Yet we will probably have as many differences as commonalities. Take my own label of bipolar: by the time you’ve factored in whether someone has BPI, BPII, cyclothymia or BP not otherwise specified, how rapid their cycling is, whether they experience euphoric or dysphoric mania or mixed mood and whether they have psychotic symptoms or not, whether they are in an acute phase or remission… well, the permutations are almost endless. It simply can’t be assumed what works for one person with a specific diagnosis will be good for another – indeed something that supports one person’s recovery (for example, relaxing and going with the flow of moods because this reduces one person’s anxiety) could be disastrous for another (such as someone who is working carefully on self-management to prevent serious mania).
Everyone needs time off duty. There are increasing numbers of professionals on Twitter, but most aren’t tweeting in a professional capacity. To my mind this is all to the good, because interacting with psychiatrists, mental health nurses, occupational therapists, psychologists, social workers and managers on a human level helps us share learning. But although professionals will almost certainly be taking back learning from Twitter to inform practice, if they’re tweeting in personal capacity it’s not fair to expect them to dispense medical opinion or speak on behalf of their Trust. It’s worth pointing out that this issue cuts both ways. It’s bad practice for a professional who has established a Twitter friendship with a service user to suddenly “put their professional hat on” and dish out unwanted advice. If a professional has genuine concerns about a person or situation, offering their observations if wanted might be supportive; imposing them without consent almost certainly wouldn’t be.
It all comes back to listening, with our eyes and with our hearts, to forging communication which is less “me/I” and more “us/we” and keeps our online community the unique space that it’s become.