Listen with your eyes

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.

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About purplepersuasion

40 something service user, activist, writer and mother living with bipolar disorder. Proud winner of the Mark Hanson Prize for Digital Media at the Mind Media Awards #VMGMindAwards 2013. Winner of the World in Mentalists Mood Disorder blog 2012. Regular guest blogger for the International Bipolar Foundation http://www.internationalbipolarfoundation.org/ Expert by Experience working with Mind training department. Working on The Incoming Tide, a bipolar memoir. Find me on Twitter @BipolarBlogger or at my Facebook page http://www.facebook.com/BipolarBlogger
This entry was posted in Activism, Mental health and tagged , , , , , . Bookmark the permalink.

40 Responses to Listen with your eyes

  1. Mel says:

    Reblogged this on Seeing Rabbits and commented:
    Excellent rules for all social media users, not just those in the mental health community.

  2. Charlie83 says:

    Charlotte I wish you would follow your own advice. I’m afraid that over the time I have followed you, you would appear to have increasingly become a twitter bully and much less tolerant of others. I’ve seen you hound people who disagree with you, tweet endlessly to your followers about someone’s throw away remark, deride someone who challenged you for only having two followers and increasingly set yourself up to be the spokeswoman for the mental health community. If we are to be a true community, lets be kind to each other, yes you like publicity and attention but there are many other quieter but equally valuable voices to be heard.

    • I fully admit to being intolerant of those who are mean, dangerous to others, rude or spiteful. It happens quite a lot, and no, I will not let cruel, intimidaory comments based on incorrect assumptions just be thrown at me without defending myself. I don’t blog or tweet in a professional capacity so, to put it bluntly, I am not paid to take crap. This means I will happily “out” people in my timeline who I feel are steering close to trolling, or are outright discriminatory regarding mental health issues. Sometimes I do that because I can’t take them on alone – I’m not always strong enough.
      I kind of have to wonder why it is if I am so awful you are still following me, and why if my behaviour is so damaging to others so that you are so very concerned you do nothing to intervene, then complain about it later when I can’t respond because I don’t have the detail? That seems rather cowardly – you don’t come out of this allegation looking too wonderful yourself and charging me with “offences” without giving specifics is, well, I’m afraid it’s a bullying tactic. But then I’ve noticed over years in the workplace that the first person to cry “bully” in a situation is usually….yep, a bully.

      • Somebody says:

        I’ve been following Charlotte for a while now, and she’s a lovely person, she’s supported me where she’s been able to and certainly, educated me.

        I have seen a number of the exchanges between Charlotte and various other inconsiderate twitter users. While I’ve seen the others to be insensitive, judgemental (something we don’t like in the community, generally) and plain rude. I’ve never seen Charlotte to be ANY of these! She’s informative and straight to the point when she doesn’t agree, but that’s not rude. Im sure, anyone if questioned about something so personal would be on the defensive, if anything I’d EXPECT people to snap. I know I have.
        I don’t think targeting Charlotte for a much needed post is fair or appropriate.
        X

      • Thank you son much, darling xxx

    • Mel says:

      What a load of nonsense. Charlotte refuses to be a doormat to abusive bullies and you label her a bully? Methinks somebody is jealous of the media attention.

    • A person says:

      Can you show me someone else so open and able to take on trolls and people who have no idea what they’re talking about? Someone who actively supports people going through crises via twitter on her own time? Being open about mental illness is a huge risk for anyone to take, especially their own. We need more of those quiet voices to step up, or have their stories told by people willing to take the heat and abuse from others.

  3. So much wisdom here for everyone on Twitter. The use of the words ‘should’ and ‘shouldn’t’ should maybe be banned… especially if preceded by ‘you’ or ‘they’ or ‘he’ or ‘she’. Follow these rules above and maybe we can sustain a truly supportive MH community – let’s not be like those described by Seamus Heaney – ‘minds as open,…as open as traps’

  4. sumegoinvicte says:

    Once again a brilliant and informative post eloquently delivered. Your blog is amazing.

  5. Pingback: Listen with your eyes « silentscreamsandfakesmiles

  6. Good advice, Charlotte. Thanks!

  7. Martin Baker says:

    Great suggestions and advice, very much appreciated, Charlotte. Thanks. Sharing.

  8. Charlotte has been a true inspiration to me when I started blogging. I find her blogs and tweets informative and relatable. Yes on some occasions she can be stern and blunt in her words and opinions but as to put her in the pool with the ‘trolls’ and ‘bully’s’ is absolutely discusting and dam right rediculous. She is not faultless and she shows enormous dedication the mental health cause not for profit but her passion and unselfish believes. Keep up the good work Charlotte and I hope my blog can help as many people, causes and campaigns as yours x

  9. beridged says:

    I don’t use Twitter, but much of your advice is applicable to other online environments too and I fully agree with it. On a forum just yesterday someone said they have become afraid to post as others’ use of the mental health area of the forum had been brought up on other, unrelated threads, in a derogatory fashion. It is not acceptable at all.

  10. Cheryl says:

    I haven’t even been following this blog a week and already see the same attitude here as Charlie83 does on Twitter. Charlotte, your recent response to a person trying to reach out to help her friend was not only rude but did absolutely NOTHING to answer her questions. I was the one who ended up responding to her. There comes a time when we have to own up to our own shortcomings and stop blaming other people for our negative behavior. And yes, I AM one with severe depression but am more concerned with helping people like her understand (even if it does touch a nerve) because that understanding is much more important than if I got my little feelers hurt. Look at the bigger picture, the one that exists outside of yourself. Most ignorant people will never bother to educate themselves about depression, won’t be supportive because they can’t understand it, or will flat out deny it even exists. It’s rare to find a person with no personal experience of depression take any steps, even small ones, to find out from other depressed people what they can do to help or understand better. It doesn’t matter if she said something annoying or not. You had an opportunity to educate someone on the other side asking for help and ended up pushing her away instead. You really do need to get over yourself.

    • Clare says:

      Dear Cheryl
      As someone who has found Charlotte’s writing and her work both inspirational and a source of much needed personal support over the past few years, I found your post really distressing. I don’t think that comments like “You really do need to get over yourself” have any place in a mental health blog. I’m trying to follow Charlotte’s advice in this blog post – and therefore to recognise that I don’t know where you’re coming from or what your situation is – but I care about this blog and want it to continue as a safe place and not one where insults and accusations are posted.

      • Cheryl says:

        The original article was ‘Ten Things not to Say to a Depressed Person’ and ‘ninetiles’ wrote in very recently asking how to help someone. The article was great and very supportive and I told Charlotte so, but the work, however inspirational, doesn’t quite overshadow the ensuing “insults and accusations” she hurled at someone else who dared to ask a question and express herself honestly so she could find some help. I’m surprised you have a problem with my one post considering this blog is filled with similar posts to other people by its owner. Read what I wrote to this person and you should be able to see my intention was not and still is not to make anyone uncomfortable or feel “unsafe.” I was FUMING when I wrote that post. If I meant harm in anyway I could have easily said so right then and there, but I chose to let it go for the sake of peace and focus instead on stopping the bullying and just answer the person’s questions. It was very appalling to me, as a new person especially, to see an innocent person spoken to that way, which made ME feel unsafe as well. I would have never posted this today if I hadn’t read that comment from Charlie83. I realized it wasn’t just me who felt that way and decided to voice another opinion as one who understood what he was saying. If it upset you then I sincerely apologize. I’m sure there are more angry people heading my way about this, but I’m not going there. THAT we can agree on. This blog (or any other blog) shouldn’t be about insults and making people uncomfortable. And that should apply to ALL people, not just one.

      • Before you judge me a bully, please consider these facts. You say you are a new follow, and if the first thing you saw made you uncomfortable, that’s fair enough. What’s NOT fair enough is that you haven’t put what you saw in any context. You saw an exchange of a few comments. That particular post (Ten Things Not to Say to a Depressed Person) has over three hundred comments, while the blog as a whole has had over two THOUSAND (that’s 107 pages as I look at it on my dashboard). And you pick one interaction, a clash between a blogger who was herself at the time suicidal (and anyone would only have to look at her more recent posts to ascertain this) and a person who presented as so wrapped up in himself that he was unable to think about his suicidal friend’s plight. I found his comments distasteful because they focused almost entirely on his needs and his feelings, speaking of wanting to abandon the friend because his focus on his life-threatening depression was making the commented “frustrated” and “irritable”. With hindsight, I actually still find that pretty despicable. In the midst of suicidality, I took it more badly than usual. Well, there you go. I am not a machine. I am a fallible human, battling moods that include the desire to take my own life. Funny how constantly wanting to die takes away your tolerance of people who appear to blame the suicidal for their own problems and want the less irritating. I not paid for any of this, and I am certainly not paid to be supportive of people whose attitude towards mental illness, frankly, stinks.

        On top of the comments you see me responding to here I also reply every single day as supportively and caringly as I can to complete strangers who pour their hearts out to me. A lot of that you’ll never see, because it occurs via email or Twitter direct message. That’s another thing I am not paid to do and I don’t get any brownie points for it – how could I, since most of it’s invisible?

        Moving on to “belittling someone with two followers” – I did do this. Why? Because IIRC the person was attempting to intimidate me, and I wanted to point out that I had no need to be scared because they had insufficient reach to harm me in that way. The account was created by a young person who had contacted me the year before wanting mental health support/advice. I had tried to be a good support to that person, but he turned against me when he disliked a piece of advice. Rather than simply unfollowing me he went on to use relatives’ accounts and create brand new ones entirely to troll me. He/they were threatening to expose me as a “junkie” because of the MH drugs I took, an “alkie” and a “pedo” [sic]. Every time I reported this and Twitter took an account down, another one popped up. I was, actually, slightly scared (so if you’re reading this, well done) because after losing my job to mental ill health I was trying to establish a new career in health and social care. Apparently even a child knows that a whiff of being unsafe to work with children and vulnerable adults can destroy a person’s career in the field. So yeah, I “belittled” the person who had once been my friend but was now using the medium over which we met to hurt me.

        This is the internet. I guess I should expect people jumping to conclusions, failing/refusing to enquire as to the context, and so on. I could have just deleted your comments. But slinging terms like “bully” around based on a mere fraction of what I do and who I am, on my own blog – THAT’S bullying. And I’m not standing for it.

    • ellen says:

      Ms Walker is no bully – the person you refer to was one of the most spectacularly self-involved persons i have ever come across. Ms Walker was far more polite and reasonable than i might have managed.

  11. Seriously awesome. If I thought my family would read it I would send it to them because this works in the “real world” too. Always worth reading your blogs.

  12. Cheryl says:

    Clare, I want to thank you. I’m sitting here thinking about all of this and realize I expressed my anger today inappropriately. You were angry with me too. However, you expressed yourself in a manner that wasn’t rude or threatening or insulting in any way. You made your point in such a way that I didn’t really get upset. I guess it’s natural to be defensive when someone tells you something you don’t want to hear about yourself. But the way you told me made me go back and look closer at what I said or how I said it that upset you instead of flying off the handle and not learning how to fix it. Had you responded in different way, I don’t think I would’ve tried to understand where you were coming from (okay I’m pretty sure I wouldn’t have). So thank you for that.

  13. Clare says:

    Dear Cheryl,
    Thank you for your reply; I appreciate your doing that.

    • Cheryl says:

      I made a comment hours ago that still sits in moderation so you might not ever see it. You did say something about not knowing where I was coming from so I referred you to the original article, ‘Ten Things Not to Say to a Depressed Person.’ ‘Ninetiles’ recently asked a question on that post and I responded to her. If this one makes it through moderation, I hope you will check it out because maybe you can see why I got angry. Not that it makes a difference, but you strike me as someone trying to do the right thing.

      • Oh – and just before you get all conspiracy theory about accounts “sitting in moderation” I’ve been out of the house from 7.30am-5.30, on training, in subterranean training rook with limited wifi.

  14. camhstoadult says:

    Well I don’t think I’ve ever heard so much drivel. Charlotte? A bully? I certainly don’t think so. She’s been nothing but supportive to me and others on Twitter and I don’t blame her for any “intolerance”when people are being damn right rude.

  15. Kathryn says:

    Great post Charlotte, lots of useful tips for the novice twitter user such as me! The internet (and twitter above all) is a pretty intimidating place and it can seem daunting, especially when you are trying to “break in” to an established community such as all the lovely mental health tweeps out there. I guess this might be what puts newer readers backs up? Don’t know. I do wish they would continue to engage with your blog and tweets, to see just how much great work you do for us all.

  16. Agreed. Charlotte Walker is objective and analytical about bipolar disorder in her blog. I have read the “offending” comments, and still see no evidence of her bullying. On the contrary, she puts herself out there in public and risks trolls and other attackers, for the benefit of those of us who read her blog. For this we should all be grateful.

  17. Bear_faced_lady says:

    Charlotte, sometimes you are short with people, sometimes you get angry – congratulations on being human! Your blog and tweets have really been wonderful support to me and I know to many others. We all have a choice in what we read and who we follow and I know my online and real life are much better from having you in them – warts and all! I think those who can’t say the same have the choice to not read what you write

    • Bear_faced_lady has said it better than I could. I am relatively new to Twitter and have only been following you a few days, Charlotte, but you are a breath of fresh air. You are real, you are generous with your time, energy and experience. Do you get it wrong sometimes? I guess so. But you say so and move on. I’m personally very glad to have met you and its clear I’m not in a minority for thinking so. More power to you.

  18. It really is simple. Some people will not like how others talk about this or that. Some will find that a person seems rude etc. and often that is due to the way what is being said is perceived due to the lack of non-text language. Given that when we speak to one another face to face the context of what is said is significantly lower than how we say it and how we look when we say it. So when it is text only, we try to add the non-verbal part of the conversation, generally by putting our own slant on what is being said. Depending on our mood, previous conversations and experiences etc this all comes into what we are reading and clouds what is actually being said. Hence, the title of this post “read with your eyes”. Though this is often very difficult to do, because we all assume there is more to what we are reading.

    If you follow Charlotte, look at her achievements, previous conversations and tweets, how and where she is involved in her community, in particular regarding Mental Health you might conclude that she has proven herself to have the best intentions at heart for the Mental Health community. She obviously is not afraid to speak her mind and to pull people up who step over the line or say things which may cause harm to others etc.

    You should also keep in mind that while the conversation may be directed towards a particular person, that person is not the only one who is able to see this, unless it is a DM. If someone who is in a vunerable state comes across these comments may be affected in a way that is unexpected and unintentional. They may not read the entire conversation, only seeing the last tweet or two and take it out of context. Something that was said as a “throw away” comment may not land as expected.

    Lastly, Charlotte is not perfect, no one is. What she has written here is well thought out, important and worth paying attention too. Charlotte may not live up to these standards all the time (though I have always found her to be kind), and if she slips up, well shes human so get over it. Taking this opportunity to attack her for what she has written here is extremely small minded and from my perspective, is only serving to undermine an extremely important message.

    I know what has been said wont stop Charlotte from speaking out, standing up for what is right and continuing to promote the best interests of the Mental Health Community.

  19. Cheryl says:

    Charlotte, that last conspiracy theory comment made me laugh out loud, thanks. My heater broke over a day ago and we are buried in 2-1/2 feet of snow and I needed that (and this isn’t sarcasm – it was just really funny). I tried to carefully read what both of you were saying before I commented at all. It’s not normal for me to jump in as a new person and comment on anything. But it really shocked me! I spend way too much time being frustrated and angry about bad attitudes from people who just don’t want to understand anything they can’t ‘see.’ When I saw this person asking to understand I was like whoa, there’s something you don’t see every day. I read them over and over and just didn’t (and still can’t) see in those specific posts between you and her where she deserved such a response. Sure, it would be great to know more about you and her and all the ins and outs, but it’s not realistic to think I would be able to go through everyone of your posts and her posts, although I did go to Twitter today to find out more based on what you were saying but couldn’t find anything. But yes, I did comment based solely on what was posted. It’s what was there. Now I have to say you shocked me again this time, first by publishing my posts (any of them) and more so by being honest about why you reacted the way you did and sharing what you were going through. Okay, so the last paragraph kind of sucked, but if you feel that I’m a bully then so be it. The important thing to me is that you responded to me in a way that made me go back and read what you wrote again to understand you better and I wasn’t expecting that. So thank you.

    • Then I call that a great outcome! I can see why you did, but it did really hurt that you based your whole opinion of me on a tiny fragment.. yeah, I’m human and it was painful. I still feel the original poster was really out of order, but when I saw they weren’t going to get that, I should have left it. That’s probably the biggest piece of learning for me. My buttons got pushed because that poster felt to me like every insensitive person who’s ever said the suicidal are selfish. I genuinely don’t believe the poster would react in the same way to a friend with cancer, and that’s not OK. If they had been saying, “My heart breaks for my poor friend, what can I do? I don’t want to get it wrong!” I would have given that person all the time in the world. But I found THEM shocking the fact their friend had already attempted, but the poster was only interested in how that made THEM feel. That isn’t friendship.

  20. Charlotte I have tweeted with you for a fair while on my old account and now my anon one and NEVER found you to be a bully in fact the suggestion for it is so ludicrous it’s laughable! Your blogpost is so accurate and the advice is essential for anyone engaging on social media. There is a line and some people cross it, I’m only sad you had to be on the receiving end this week. I love that you and Cheryl have found common ground, that must feel good? I wish you the very best for your recovery and look forward to experiencing it vicariously through your blog and wonderful tweets. C. X

  21. Well said, Charlotte and I totally agree. I’ve got bipolar and a physical disability but I have had the odd random tweet where I’ve been told ‘sleep on it’ or ‘you’ll feel better in the morning ‘ and sometimes I get sick of saying well, actually…
    I’m lucky not to have had yet to deal with trouble makers like you had to recently and hope I never will.
    You’ve been an inspiration to me and I wish you all the best. Looking forward to reading your book too.

  22. Diane says:

    Great advice. unfortunately, because people sit behind a desk and they are not directly in front of people they believe it gives them easy access to behave in a way they probably would never do if they were face to face with someone. Sounds like you are doing a lot to help people and that’s great.

  23. Linda Gask says:

    You have written some extraordinarily good advice here. I think you should retweet it from time to time! Picked up on your comment about it yesterday and came to find it. I am permanently off duty now, but still have my training in my head, and sometimes it’s hard to switch that off. A good reminder!

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