‘There’s Such a Need for This’

American Association of Suicidology
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This week, the Canadian activist who tweets at @unsuicide takes us on a tour through the online world of crisis response, where the suicide awareness establishment acknowledges it’s still largely clueless. In the conversation ahead: social media suicide hoaxes, what Twitter does wrong, the need for transparency, why hotlines are outdated, why trained peers are crucial, and how to walk the oh-so-careful law enforcement line between tracking people down for help and scaring them away.

Who are you?

My name is Sandra Kiume Dawson. I’m a suicide attempt survivor, living with bipolar and other conditions since I was 7. I’ve had multiple attempts. Through treatment and self-education, I’ve learned a lot about suicide prevention, both from the standpoint of suicidology but also from more grassroots efforts. I have a part-time job as a mental health blogger at PsychCentral that helps ensure I keep current with mental health news.

Suicide is not the only topic, but I often write about it. I also have a wiki, Online Suicide Help, which is a directory specializing in e-mental health services, crisis IM chat services, social media supports, peer support forums and more. There’s quite a lot out there and more all the time. I’ve collected these resources into one place so people can find them easily. Another thing I do, I’ve been on Twitter since 2009 as @unsuicide, a peer support suicide prevention account. I’m not a trained counselor, but since I have lived experience and a lot of knowledge of the mental health systems, I can help people navigate both online and off to find supports.

A typical conversation with someone on Twitter is something like, “I have a plan to kill myself.” I’ll say, “Do you want to go to the hospital?” “No.” “Do you want to call a hotline?” “No, I don’t want that. I’m afraid the police will come knocking at my door.”

Or, “I have anxiety; I don’t want to talk on the phone.” That’s where online services are helpful: texting or IM chat services. It’s great to see more and more available. But I also refer people to peer support, because often people are more interested in peer support than professional help, or they want both. People want to know others really understand them; they can talk to someone who’s been where they are and have recovered. That provides a lot of hope, makes people less alone. Feeling suicidal is a very isolating experience, and so anything that makes you feel less alone is helpful.

Where did you come up with the term “unsuicide”?

I thought it was catchy and reflected my goal of people proactively preventing their own deaths. Unsuicide as the opposite of suicide.

When did you start pulling all these resources together?

I started on Twitter in 2009, and created the Online Suicide Help directory in 2011. I had already been bookmarking resources for over a decade.

Do you have everything?

No. I don’t pretend to be completely comprehensive. I’m continually searching for more, and asking people to share links. And there are always more services coming on board, especially with crisis chats.

Do you have measurements of users, traffic, etc.?

I do keep track. I get about 6,000 hits a month and have 15,000 Twitter followers.

Who comes to you?

With the wiki, it’s really worldwide. I’ve had visitors from 158 countries. The tragic thing about that is that while I’m aware of the worldwide need for online services, they’re not always able to access services because of geoblocking – restricting services to one country or even a single town. There’s a huge need to create an international network so people in, say, Mongolia or Malaysia or Ecuador or, you know, any country that doesn’t have the money to start their own services, can access help. People are desperately searching, and it’s devastating when they find there is a service but it intentionally won’t serve them.

Do you get paid at all, and how much time does this take?

No. I don’t get paid for this at all. How much time is really variable. I will check usually every day to answer tweets, share links. I would guess an average of maybe an hour a day, two. If someone contacts me to talk, it can take more time.

What has been the response from organizations you reach out to?

The IASP at least wrote me back. A lot of organizations don’t. I’ve tried writing to organizations that completely ignored me, like the Samaritans in the UK. It’s been frustrating because I don’t have a Ph.D, I’m not a suicidologist, am not employed by an organization and I don’t have credentials. And because of that, I think they’re not willing to engage with me.

You mention that you’ve had the experience?

Yes. It doesn’t make a difference. There have only been a handful of organizations that have taken me seriously. Crisis Chat is one, in the US.

A big exception happened recently with a petition I started to ask the American Foundation for Suicide Prevention to change the language of “survivors of suicide” to “survivors of suicide loss” or “the bereaved” in their events and literature. Once it reached 100 signatures, I contacted the CEO, Robert Gebbia, and he was very responsive and respectful and agreed that the language needed to change. I look forward to that happening soon.

What more would you like to see?

An organization that involves and includes users, by which I mean Internet users and app users who are also mental health service users. I see sometimes that organizations will engage stakeholders and say, “Oh, we’ll bring in a couple of people with lived experience and see what they think, or do a focus group,” but those consultants are not always on social media and seeing what triggers people in that realm. It’s people who don’t necessarily know the online landscape. Without mentioning an organization, I saw this just recently and it was really discouraging. I think people with lived experience who are brought on board need to have certain qualifications. Not academic, but the right experience.

In terms of diagnosis? Or what they lived through?

What they lived through, and what type of services they’ve engaged with in the past.

Have they used online services, do they know what they’re like, the barriers involved?

Just pulling someone out of the hospital randomly doesn’t mean they know how a crisis chat operates, or what kind of supports are on Twitter or Reddit, or the pros and cons of texting vs. IM chat.

Do you have a roll call of favorite resources?

Yes. There’s a service called Youthspace.ca for Canadian youth under age 30, which is actually problematic as a lot of online and texting services are just for youth and adults are often left out. They’re a great site, with texting, chat, a forum and trained counselors. IM Alive is now available 24/7, which is fantastic, and I’m also fond of Crisis Chat. But both those services are for Americans only. I wish I could recommend a peer support service, but I only know a few services that aren’t specifically for suicide. Real-time, peer-led suicide prevention intervention online almost does not exist! There’s one tiny service in the UK, but that’s all I’ve found beyond social media, and those people are lacking organization, training and support. There’s such a need for this. The professional peer support specialist community has not seemed to recognize this need yet, or has not acted on it. Professionalized peer support is only available offline.

How much do you think traditional nervousness around suicidal thinking affects not innovating?

I think it causes a rift because traditional services are hesitant to bring lived experience on board. I think in America it tends to be even more split: peer-led groups tend to be doing their own thing, as often they have a history of antipsychiatry activism. And possibly for that reason, the peer-led organizations – I don’t know, I’m just guessing here – but they’re maybe not privy to the same research that other suicide prevention organizations have access to. So maybe they’re not as up with changes in technology and demographic trends. I’ve noticed, too, that not only have I had trouble engaging with the traditional organizations, I’ve had even more trouble getting cooperation from peer-led organizations. There’s a schism that they’re suspicious of anything to do with psychiatry, and they want to do things their own way, and if you’re working within or advocating the medical model at all, you’re suspect. At least, I’ve been shunned before for that reason.

So that’s why I’m kind of doing things on my own here, you know? It’s frustrating. But if suicidologists don’t want to work with me and peer support activists don’t want to work with me, it hasn’t stopped me from doing a lot on my own.

But you’re on a national consumer group in Canada, right?

I’m a member of the Mental Health Commission of Canada Advisory Council. It’s not a consumer group, but I’m one of three members with lived experience on the council. It’s really exciting because I’m now included in high-level strategic discussions for national mental health policy. People with lived experience are not often involved at that level.

How did you come across each other?

I was already on their e-list. They put out a call, and I was one of almost 200 applicants.

Again, are you being paid?

For the advisory council, I receive a per diem plus travel expenses, yes. For the work I do on my own, no. I can’t expect to be paid for something that’s my own initiative. But I don’t mind, I can do a lot on my own. I went to an e-mental health conference last winter and showed a researcher my wiki, and she was just amazed I had a budget of zero. They spend millions to create a website, and to me, that’s such a waste of money. I can make a
site for nothing. So I did.

Where else would you like to take this?

I’d like to see what I’m doing expand into an international network with the cooperation of Twitter, as well as law enforcement. That’s beginning to happen now, but I’d like to see more peer involvement in the design and operation. When people have already announced they’ve ODed, they need immediate medical attention, and there’s no way to get them care if you can’t track their IP, which only law enforcement can. It’s really frustrating when people leave suicide notes and you can’t do anything else. Twitter is not helpful, all they do is send an automated DM telling the user to call a hotline. A new approach involves cooperation with social media companies, law enforcement and professionals who do counseling online. But it’s also critical to have peer support and lived experience advocacy in that equation. I see a lot of people afraid to talk to nurses and doctors, and even more afraid to talk to police. Peers have empathy, they’re not as scary, they understand and they can have intervention skills training. The right person with the right training and experience can be even more effective as a crisis counselor than someone who doesn’t have that lived experience.

What’s the ideal way to involve cops?

I think there needs to be rational discussions between people with lived experience and the police to see what those boundaries are. For example, many people don’t know the difference between self-harm and a suicidal act. They see a tweet “I just cut myself” and see that as a suicidal act, and if they brought in police to knock on the person’s door, it would be inappropriate. To have that knowledge, to know when intervention is warranted, is vital. Otherwise, you just scare people off, and they don’t trust you anymore. Phone hotlines have this problem, they have a reputation as being untrustworthy because they call police, and it’s a big part of the reason people I talk to refuse to call a hotline. It’s hard to know when to make that call.

Are online crisis services more transparent about their policies about contacting police?

Some are, but generally not that I’ve seen, no.

How do you work with law enforcement?

I’ve only called police a few times since 2009. I don’t involve police unless an attempt has already taken place and the person is unresponsive. One was an example of someone who left a suicide note and left enough clues on their timeline that I was able to figure out where the person lived. I called police, they checked it out, and it turned out to be a hoax. It’s surprisingly common. Another time, a girl, a teenager I had been talking to for over a month, was really depressed. She was saying how she was going to kill herself on her birthday. It was coming in three weeks, two weeks, one. I kept trying to get her to go to a school counselor, any kind of option, but she was not willing to do anything. She just kept coming back at me with, “I’m going to kill myself on my birthday.” When the day arrived, she left a suicide note on her timeline. That was it. I called police. They tracked her down at her school, and she was super mad at me. She deleted her Twitter account, and I never heard from her again.

She was OK?

She was alive.

Did law enforcement get back to you?

No. But she had made so many threats repeatedly, and she was so unresponsive that I felt involving police to get her to help was warranted. There was a similar incident with another girl but not enough clues about location, and when I phoned police, they said no, because it’s on the internet they can’t do anything. They brushed it off. That’s been a barrier to working with police. Unless they know an exact street address, they don’t respond. They don’t have access to Twitter’s user data. Fortunately, that’s changing now with the new Real Time Crisis service.

Why are suicide hoaxes surprisingly common? Why would someone do it?

I can only guess, as I’ve not read any research on the topic. But basically, it’s for attention, it’s to gain more followers or specific followers and get sympathetic messages encouraging them to live.

“Celebrity blackmail” is one very common reason behind a suicide hoax, especially among youth, but I’ve seen it happen with fans and stalkers of any age. The person will send a tweet to a celeb saying, “If you don’t talk to me/follow back/RT me, I’ll kill myself,” and it’s purely to gain the attention of their idol.

Another category of hoaxes comes from people who are genuinely disturbed, trying to gain attention for a personal issue in which they’ve felt silenced. They may tweet repeatedly to mass media accounts as well as anyone who will listen about being victimized by something, and sometimes make suicide threats.

I think someone who creates a hoax does have issues to look at, it’s not something a healthy person does just for fun.

You say Twitter isn’t responsive. Is that the same for other social media companies?

They all have different policies.

How hard would it be for them to make the changes you’d like to see?

It’s a technical issue, isn’t it? On one hand, you don’t want just anyone to say, “Oh my friend says she doesn’t like her life,” and send the police. That would not be a good approach. But if it’s a matter of, there’s a safety team already online and doing outreach and identifying when there’s a real, bona fide crisis and there’s a life in danger, an attempt has happened and a person needs immediate medical care, that’s where I would like to see Twitter and other services working with police and peers. And it’s coming, slowly.

What are the risks involved?

Of service users becoming less trusting of people like me. Right now, people trust me because I’m one of them, I have empathy and I’m not a police officer or a doctor. I don’t want people being afraid to contact me. Transparency is really important. One problem with hotlines is people being afraid of police being dispatched. Some hotlines have different policies. Some will send police and some have confidentiality policies. It would be better to know up front, because people have been quite traumatized by police showing up at their door unexpectedly.

Have you reached out to crisis lines on that issue?

No.

Here’s a question I’ve had a lot: What is a good suicide forum online?

It depends on the kind of support you want. I have close to 100 mental health forums linked in my wiki. Specifically for suicide, there are a couple I don’t recommend, but Suicide Forum is a good one. I also like PsychCentral’s forum, it’s a major one, but it’s not for suicide talk. It’s good for issues of depression or anxiety. You can dance around it, but you can’t mention suicide.

Why tiptoe around the subject in forums like that?

I wish they didn’t! It’s because of the fear of triggering, but where do you go if you can’t talk to peers, right? That’s why projects sometimes turn up on their own with their own rules. And that’s where my Twitter service comes in. People can say anything they want to me. I don’t get triggered. I think those who’ve had attempts are less afraid of talking about it. We’ve seen the darkness, and it can’t get any darker. I’m not afraid of it. I can hold someone’s hand and guide them out of it. And I think there should be more safe spaces like that. I guess that’s what hotlines are for, but they’re so outmoded, and they’re not peer services.

One thing I’d like to see, if we’re talking about alternatives: safe places to go and talk about suicidal feelings without the risk of being forcibly taken to the hospital. 24/7 crisis respite services with peer support and clinicians where people are free to talk about their feelings and not afraid of being institutionalized, even though that fear is often based on stigmatizing old stereotypes and not the reality of modern hospitals. It would be good to see that concept online as well. If you’re going to build a peer crisis service, with warmlines, etc., why not make them online services as well? Demand is there.

I’m not afraid of hospitals myself, and am not anti-psychiatry. Medication works very well for me, and I’ve been in hospital many times without any abuse. It kept me safe and saved my life. But I recognize that there are a significant number of service users who are afraid of hospitals or who had bad experiences and don’t want to go back. They should have an alternative.

How do you protect and take care of yourself when working with people in crisis?

For one thing, when I hear some of the negative things commonly expressed, I can recognize them as symptoms of depression, bipolar, whatever the person is dealing with.

A lot of people I talk to have borderline personality disorder, for example, which I used to have but recovered from. So I know the symptoms. When someone says a statement I recognize, I encourage perspective and insight.

I’m also very good at self-care and managing my moods and reactions to triggers, and when I feel fragile I simply don’t log into @unsuicide. I take a break from it for as long as I need to. I have the flexibility and knowledge to do that.

How did you get better?

It wasn’t simple. It was a multi-stage process. Finding the right medication combination and adjusting when needed, with the help of my doctor, was essential, but that’s not the whole answer. Lifestyle changes were critical: regulating my sleep cycle, getting fresh air and sun, lots of nature. Parks and trees are good for me. Moving to a quiet community that was a less stressful environment was helpful. Whatever I can do to lower stress is good. I also went through both CBT and DBT therapy, which were very helpful. I practice gratitude, and really like mindfulness meditation. I have a lot of apps as well. My mental health toolkit is a formidable arsenal. And last but definitely not least, love and support from my wife has been amazing and so helpful to my stability.

Where are you today?

In a pretty stable place. I still have occasional episodes. I can still get triggered, but I’m careful about self-care and pulling back from things when I’m feeling vulnerable. I’m not on @unsuicide every day if I’m in a low mood. If I’m just feeling kind of jaded about things, not feeling very supportive, I’ll just say, “I need some self-care, I’ll be offline today.” People understand. I leave the link to the wiki: “Here are others who can help you.”

Who else are you?

I do jewelry design as a hobby, and I don’t know, I’ve been many things in my life. I’m an Air Force brat, I grew up all over the place. Then I lost and gained a lot of different jobs, so I can’t say, “I’m a (blank)” because I didn’t have one career. There was so much chaos. In the last 10 years or so, since going on disability, things have calmed down.

I’m a mental health advocate, though I don’t like that phrase so much because it’s so vague. I’ve been on the board of a mental health housing nonprofit society, I’ve worked for a homelessness and mental health research project and I have a part time job at PsychCentral. Never just one thing.

Anything else to add?

I see so much peer support available online in forums and chat rooms, but I see damaging advice being given, flame wars sometimes. And I think there’s a real need for people giving peer support to have some skills training, and I don’t know how that could happen in an unmoderated internet. On one hand, you have certified peer support specialists working one-on-one with people offline. On another hand, you have millions of informal peer supporters online, but those people have no training at all, and sometimes they’re giving really bad advice. They don’t have an ethics background, or trauma-informed care skills, and they often can be triggering to people. I just wish those certified peer specialists would merge with the informal peer support. Set up a free mass training system for mental health literacy and intervention skills, a free webinar, or a site where you can get a mini-certificate. If peer specialist trainers set it up, that would be the most logical thing to do. But right now, I basically see them ignoring the internet and not integrating it into their work. They’ve got to get over that. Mental health professionals are now routinely offering e-mental health services, and it’s time professional peer support specialists were doing it as well.

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11 COMMENTS

  1. “even though that fear is often based on stigmatizing old stereotypes and not the reality of modern hospitals.”

    Not the reality ? Think again.

    The hospital experience still includes “rapid rights removal” a dehumanizing get naked and be viewed strip search, locked doors, cell phone confiscation and threats of injection and long term lockup in the state hospital to coerce medication on people who attempt to refuse the ‘find the right meds’ Guinna pig game or to shuffle around zombie like on Haldol for so called ‘agitation’. Agitation usually caused by the dehumanizing “rapid rights removal” process in the first place. Some fight back and get the restraints too.

    I lived it. My chart said ‘suicidal’ but had already learned to never say ‘yes’ to the suicide question already just like almost everyone else who ever said ‘yes’ before to a mental health worker and was “treated”.

    Someone else online already wrote alot of what I would say about it,

    “It is well documented that many people experience involuntary psychiatric treatment as an assault. Some describe it as similar to rape where the assault strikes to the core of your body, mind and soul. As w ith sexual assaults, our mental health system need s to respect the very basic human requirement at such times that ―No‖ means ―No‖. It is also well documented that many suicidal people are struggling with complex personal histories of trauma. For these p eople, involuntary psychiatric treatment further traumatises them, often worsening or indeed sometimes triggering suicidal feelings. More generally, if we understand suicidality as a crisis of the self – i.e. rather than the consequence of some ―mental illness (see below) – then it simply does not make sense to further attack an already fragile sense of self. It is hard to imagine anything less helpful for the suicidal person than to be assaulted by those you seek help from at a time of such crisis.”

    http://www.communitylaw.org.au/mhlc/cb_pages/images/MHLC-Forum-Paper%20David%20Webb.pdf

    Maybe if human right abuses were not part of the hospital experience more suicidal people would seek help.

    • My “treatment” included attempts to coerce medications that increase suicidal acts in studies.

      I was also accused of ‘Bipolar’, I found this:

      “Yet, the best available evidence shows that unmedicated patients with bipolar disorder do not have a higher risk of suicide.

      Storosum and colleagues analyzed all placebo-controlled, double-blind, randomized trials of mood stabilizers for the prevention of manic/depressive episode that were part of a registration dossier submitted to the regulatory authority of the Netherlands, the Medicines Evaluation Board, between 1997 and 2003 [28]. They found four such prophylaxis trials. They compared suicide risk in patients on placebo compared with patients on active medication. Two suicides (493/100,000 person- years of exposure) and eight suicide attempts (1,969/100,000 person-years of exposure) occurred in the group given an active drug (943 patients), but no suicides and two suicide attempts (1,467/100,000 person-years of exposure) occurred in the placebo group (418 patients). Based on these absolute numbers from these four trials, I have calculated (see Figure S1 showing calculation, and see Figure 2) that active agents are most likely to be associated with a 2.22 times greater risk of suicidal acts than placebo (95% CI 0.5, 10.00). ”

      http://www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.0030185

      So there I was labelled ‘suicidal’ and ‘bipolar’ being ‘justifiably’ coerced to take drugs that make the suicidal condition worse. I was never bipolar, my family read some disease monger stuff that ‘explained everything’ to sell drugs. “Bipolar for Dummies”. I was never so called bipolar, psychiatry had made me a Clonopin addict and then piled on a ton of drugs including Zyprexa to “treat” that.

      I looked really hard to find any data that proves medication prevents suicide before posting and could not find anything.

    • I find it very interesting that the statistics state that you have a greater chance of attempting suicide after being released from so-called “treatment” in a psychiatric facility that you do before you go in. Interesting.

      I’ve never heard any psychiatrist explain why this is and they don’t want to answer my question when I raise it. Go figure. Perhaps what the person experiences in the “hospital” pushes them to the brink of despair?

      • I think some people learn that admitting suicidal feelings results in ‘treatment’ that feels a whole lot more like punishment.

        The problem is I guess is that if people got extra positive loving attention for suicidal thoughts thinking very quickly there would be a ton of fakers.

        What do you do about that ?

  2. “There’s Such a Need For This”. Really???? In Canada????

    The author is on disability and on meds. Anyone in Canada who wants to be on disability and meds can have that option. What we need is other options. What we need is someone to tell young people that they can and will recover from their “mental illness”. That they do not need life long drugs and disability payments because they “have” bipolar, personality disorder or some other label. This is all we hear in Canada and those few people who are on this website know that psychiatry is based on these lies.

  3. Since as the author of this post said, she is not comprehensive and indeed it’s generally impossible to be comprehensive about these topics, I’m sharing a link to a collection of alternative ways of considering and treating people who are feeling suicidal…it’s always been a very popular page on Beyond Meds… http://beyondmeds.com/2012/09/10/suicide-prevention/

    I have seen far too many people in the care of social services and standard mental health care grossly retraumatized rather than helped when feeling their most vulnerable because too many people in support positions do not understand these loving, accepting and healing approaches…

    thanks for having this conversation.

  4. I just want to tell you, I LOVE your blog. You write with a poignant, genuine voice that has no dictatorial agenda. You also write about unique topics. I am hoping to start a blog myself soon, and I see your writing as an example that I would like to follow. Hopefully I could connect with you!
    ~Neesa Sunar