4 Things I’ve Learned on Twitter

In no particular order, here’s a few things that being a mental health academic on twitter has taught me:

1. Resist the urge to say “we’re not all like that…”

My own experience of this relates specifically to mental health, and I’ve written previously about my own learning curve of realising that wading into peoples’ accounts of negative experiences with mental health treatments/services/research with a defensive “We’re not all like that!” is unhelpful and inappropriate. The statement might well be true, but it can effect seem to be about silencing people who wish to express criticism, and valuing one’s own hurt feelings (“But I’m one of the good guys…”) over someone else’s need to talk about their experiences. This is especially the case in situations where there is a power imbalance – as with patients expressing their anger or upset being ‘corrected’ by health professionals insisting they shouldn’t generalise.

This issue is also prominent on twitter in the form of #notallmen. In this case, it’s a response used by women (and some men) who get fed up with reactions to their discussion of sexism being taken over by men insisting “Not all men are like that...”. As with the above, this is undoubtedly true – but it can have the implication of privileging the needs of those ‘other’ men over the need of women to discuss their negative experiences. The equivalent in each case would be someone mentioning that they’re in a lot of pain since they got hit by a speeding car, and you defensively responding “Not all drivers are like that!”. Well, quite… but maybe a response of “that sounds awful” or “sorry to hear that” would be a bit more appropriate?

2. Patients don’t want to be “put” places, including “the centre” and “in control”.

I’m absolutely guilty myself of trotting out the phrase “putting patients at the centre” or “giving patients’ control”. The issue here is that these phrases ironically continue a narrative of patients as passive, requiring us, the heroic, generous professionals, to “put” them into action or “give” them responsibility.

I’ve seen similar dislike of the phrase “capturing patient experience”, which again I’ve used a lot myself, and which is another example of seeming to value patients but actually maintaining the sense that their “experience” is something wild and untamed, and needs us to come along and “capture” it. (Take this further of course, and the analogy suggests we’re then holding it against it’s will…. It also now makes me think of butterflies being pinned lifeless to a page, recorded and contained, but with their true nature lost.)

3. The people talking about doing and the people doing aren’t always the same.

I’ve noticed two cases of this. Firstly, people I find online who are researching technology, communication and social media, and then don’t appear to have a twitter account or an up to date web page. Secondly, researchers who tweet a lot about patient engagement, the need to hear patient voices etc, but who seem to rarely ever respond to actual patients online who tweet them or blog about their research in a way that’s accessible to those patients.  “My latest paper, on the hermeneutic phenomenology of dialectal epistemological discourses, is now out. Pt voice so important. (Paywall)

4. People, on the whole, are rather nice.

I’ve had probably less than my fair share of people being outright rude to me, disagreeing with me for the sake of it, implying I’m somehow evil because of the research I do (after tweeting about trials once I got called “a neoliberal foetus”), and sexism online. However, on the whole, these experiences are in the minority. Instead, I’ve encountered lots of very nice people, shared an inordinate number of cat pictures, and quite often had a great deal of fun.  Ta, twitter. Ta muchly 🙂

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5 Responses to 4 Things I’ve Learned on Twitter

  1. Great post! I really agree with point 2 re: language of participation/involvement/voice/experience (how and when these words are used is another interesting point!). This is the case with ’empowerment’ which implies that the power is yours to give

  2. Ray Woodward says:

    A great post as usual. You blog really is essential reading 🙂 I loved your observations about conference Q&As in your recent post by the way – it made a great game of bingo for me recently.

    The “we’re not all like that” observation is spot on in one way but often if there is to be engagement with a patient sounding off I feel it’s worth remembering that most of them didn’t want to be patients before the unpleasant experience or frustration provoked some latent fears they held. As you imply they’re more often cries for help than expressions of opinion so providing something tangible to demonstrate why we’re not all like that could be helpful or even just observing that the aggrieved patient appears to be on the right (or wrong) track and why. Sympathy is great but validation (or not) and advice (obviously within ethical bounds e.g. pointers to potential resources or support) could be amazing sources of emotional relief as well as sources of information for care providers and other patients.

    The ranty part of me loves point 2 because it hits all my frustrations with some very overused phrases – far too many are made meaningless because of their vagueness or essentially truisms. I think it’s got to the point in some areas where using them creates a greater barrier to informed care than omitting them would. There are others that are encountered so frequently in different contexts that they can easily be misinterpreted, misunderstood or written off as waffle or jargon. Anything involving ownership or centricity are prime examples that make me and others in MH switch off.

    I agree with you that Twitter is generally a very pleasant place. It also has the advantage of engaging with a huge number of marginalised groups I haven’t seen on other social media platforms. But it’s also a frantic fast moving maelstrom of thoughts and ideas so I wondered what what your thoughts were about what it takes to be heard. I’m a male IC1 so my job is to shut up while I check my privilege and I wish more of us would – it’s like a world of Point 1 idiocy sometimes. Therefore I’d also be interested in your thoughts about the different character each social media platform has and how best to use them – Google+, Facebook and Twitter feel very different to me and I have my own views on this topic but this post is perhaps getting a bit like one of your examples of Q&A hogging so I’ll shut up.

    • Hi Ray,

      Somehow I missed this! Thank you for the kind words 🙂 Glad the points rang true with you as well.

      I think you’re right that the different platforms have different ‘feels’ and so I wonder if they attract (or repel!) different groups. For me, it seems Google+ is where people do work, Facebook is where they flirt or talk to family, and twitter is talking/pontificating/messing around. I don’t use either Google+ or facebook though so I’m perhaps not best placed to consider the differences. What were your thoughts?

      S x

      • Ray Woodward says:

        No worrries Sarah – it seems I’m even slower in replying to your question!

        Personally I don’t find Google+ more work focussed but think of it as a Facebook for polite people. There’s certainly less cattiness etc. and more self moderation on G+ – it sort of sits in a quieter more organised space between the reciprocal(ish) relationship leviathan that is Facebook (where there is a constant erosion of privacy and oversharing is rife) and open noisy and sometimes apparent chaos that is Twitter.

        I think the other thing G+ now offers (it used not to) is the ability to be relatively anonymous – it only takes a few seconds to create a GMail account and with it a new G+ persona – so as an end user it’s much easier to protect one’s real-life identity from being associated with the stigma that mental illness still carries. I haven’t checked but I’d be amazed if LinkedIn had anywhere that mental health issues would be discussed or linked to a user profile.

        The one thing that both Facebook and Google+ also offer beyond the extended IRL conversations are the open and closed communities that can be created by owner(s) who can appoint moderators and thereby also define and enforce rulesets for the groups. Both FB and G+ have developed a large number of communities that relate to varying aspects mental health conditions so that geographically diverse end-users who may feel very isolated can share experiences, pose questions, float ideas and correct misconceptions, often in real time but to a more controlled group of participants than twitter can offer with the added bonus that there’s the ability to share relevant media without character or format limits. I think the fact it’s possible to try out and build multiple support networks of different sizes and that relate to different and maybe overlapping aspects of life for a mental health services user make these platforms extremely useful, even if it’s just to share and comment on picture memes that community member has created or finds that they feel is pertinent to that particular group.

        From a research perspective, depending on what you’re interested in they are either fortunately or unfortunately a self selecting population. Alternatively they could also provide an easy way to set up discussion groups relating to particular studies without having to create and support the IT infrastructure around it, and they have existing web browser based functionality and mobile applications that provide interfaces that users are familiar with and simple to use.

        There is also a smaller social platform, MeWe https://mewe.com/
        (it used to be called Sgrouples) that is much more privacy focussed and could be used to Facebook/G+ type activities but with greater assurance regarding security and privacy of users’ personal data.

        Anyway I hope my thoughts on this are helpful/interesting – I’ve just read your very interesting examination of the Samaritans’ app (my opinion: a badly thought out app and a privacy disaster) – so some of what I’ve said may not be as helpful/insightful as when you first posed the question to me last week.

  3. Pingback: Twitter and The Samaritans Radar: Thoughts from an e-health perspective. | saraheknowles

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