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‘We need more freedom to shine this light’

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Today’s post is by Sandra Kiume, a writer and activist who has turned years of personal experience into a spirited understanding of the ways peers can help one another.

This blog soon will report on the annual conference of the American Association of Suicidology, held late last month, and what new developments could mean for attempt survivors and others who’ve had suicidal thinking. One small but bright symbol: For the first time, attempt survivors had their own ribbon that they could use to identify themselves at the conference. Every other group already had one _ clinicians, the bereaved, and so on.

Another development worth noting: If you’re interested in starting a support group for those with thoughts or actions of suicide, take a look at this recent webinar that’s been posted by the National Empowerment Center. A peer-run group in Massachusetts explains how it’s done.

And here’s Sandra:

Today is a beautiful sunny spring day in Vancouver, and as I look at the fresh view from
my window, I’m glad to be alive. It wasn’t always this way.

I have bipolar disorder, and every episode of depression is accompanied by inevitable
suicidal thoughts. I’ve made multiple suicide attempts, nearly dying more than once. I am
truly a survivor. But because of the cyclical nature and predictability of suicidal urges,
I’ve learned how to cope with them.

There’ve been many years of treatment from professionals, self-education and learning
from peer support. There’ve also been different personal approaches used while trying to
outwit my own brain when it turns against me. By using and collecting these strategies,
I’ve gained a solid grounding in what works well for me and my peers in moments of
crisis. I now apply this knowledge in many ways.

The most significant, in my view, is the Online Suicide Help Wiki. Recognizing that my peers are less inclined to use telephone helplines nowadays for a number of reasons (privacy, anxiety, phone records, etc.) and after seeing many queries online at sites like Yahoo! Answers looking for an online hotline (often without a knowledgeable reply), I created the wiki as a directory of services offering crisis counselling via IM chat, email, Skype, and more. The wiki also links to peer support forums and chat rooms, social media supports, a collection of mental health apps and self-help information that I feel was or would be especially helpful for me and others in a crisis: professional resources vetted from a consumer perspective (usually it’s the other way around). Some of my favourites include the excellent Coping with Suicidal Thoughts guide, the very hands-on Coping Suggestions for the Suicidal Person and the pragmatic and peer-informed Hello Cruel World free app. The wiki has become a valuable resource as the only site of its kind, and many suicide prevention agencies and service users now link to and utilize it.

However, in creating this comprehensive directory of online supports I’ve learned where
gaps exist and identified flaws in services. Geoblocking (restricting services to people
from one country or even a single town, the antithesis of the world wide web), age limits and lack of late-night services are major problems and are complaints I commonly hear from other service users. I’ve tried to address these issues with organizations, but rarely have I even had a response. My concerns have not been taken seriously by most, and suggestions for improvement have not been pursued by any.

My other peer support passion is a Twitter account, @unsuicide, that I use to share links to resources, coping tips, ways to connect to help and other useful information for people experiencing suicidal thoughts.

I regularly ask my 10,000+ followers to share their favourite coping strategies and things
like music that comfort them, re-tweeting this peer knowledge so even more people
benefit. We talk about reasons to live, like pets, and share cute pictures of our beloved
companions. Coping strategies we’ve shared include visualization techniques learned in
psychotherapy (imagine suicidal thoughts as clouds and simply notice them float by),
outdoor exercise, journaling, art, listening to music, reading, cuddling a stuffed bear,
taking a shower, calling designated personal supports and making yourself go to sleep.

When I started the account in 2009, it was partly in reaction to the fact that suicide
prevention organizations do not offer support on Twitter as a matter of policy. Instead
they share fundraising pleas and “inspirational” aphorisms that demonstrate a lack of
understanding and empathy. How I wish those organizations, and suicide loss survivors
who also tweet “uplifting” things, realized how much “turn that frown upside down”
sayings can actually hurt people!

Instead, @unsuicide is a place where people can find true empathy and practical answers.
I don’t do counselling myself, lacking the educational background. It’s far from a
perfect service – I’m only one person and am not online 24/7, so I can’t respond to
every message immediately. Although it’s not a crisis service, some people treat it that
way. Also, when following so many people it can be hard to keep track of individual
situations. But I do help people as best I can to find offline and online supports and self-
help, drawing from a wealth of experiential knowledge of the mental health system from
my own life and those of my peers.

These days there are hundreds of DIY suicide prevention accounts on Twitter and they mostly stem from the same desire: to offer encouragement and empathy gained from having mental health issues to support peers, because they feel they didn’t get that type of support themselves. These accounts exist because of another system gap: People want services to be available on their own terms in their own spaces accessible when they need them, and if they aren’t there, technology allows anyone to hang a shingle. Nature abhors a vacuum.

I’ve got a few years of living, plenty of specialized knowledge and more experience
with recovery than most of the people maintaining those accounts and am careful
about what and how I share my experiences. Trauma-informed care is important,
and I know what can be triggering. I’ve learned a great deal about mental health,
including suicide prevention research, through my job as a blogger for PsychCentral. Years of research for articles alongside personal self-education go a long way. But it still doesn’t make me a professional, and so I remain an outsider.

Stigma against suicide attempt survivors takes many forms in the field of suicide
prevention and What Happens Now? explores those issues with refreshing and insightful
posts, so I won’t repeat what you’ve already read and will continue to read about. I’ll
simply affirm that I’ve experienced stigma, discrimination and hate resulting from my
suicidal thoughts and attempts from many sources, starting with classmates at the age
of 11, to ER nurses, psychiatrists, estranged family, lost friends, colleagues, landlords,
strangers and suicide prevention professionals. The one safe place where it hasn’t
emerged is with my peers.

Informal talks with psych ward co-patients about our suicide attempts were revelatory
and inspiring, because I felt less alone, finally understood and free to speak. Often in
hospital it wasn’t the doctors and nurses who were therapeutic for me, it was honest
heart-to-heart conversations with peers.

Outside the ward, connecting with peers online has led to supportive relationships,
friendships, and knowledge exchanges that have enhanced my writing as well as the work
I do on @unsuicide and the Online Suicide Help Wiki. This in turn helps those who may
not be familiar with the mental health system as I am, or the ways their own minds trick
them into believing suicide is a solution.

Suicide is not a solution, but surviving a suicide attempt and successful recovery from
mental illness does illuminate solutions for those who are struggling in the dark. We need
more freedom to shine this light, instead of shadows cast on our success.

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2 Comments Join the Conversation

  1. Just a note to say I really enjoyed reading this post Sandra – it really brings home the power of peer support and the knowledge derived through personal experience – something that is different to but should be as equally valued as professional training. In the UK, in our mental health service (like many others) we are developing peer support worker roles working as part of clinical teams. I think this is a fantastic development but I also am struck by the immense improtance and value of DIY connections that social media affords and which can operate outside of services. I do hope services in your country begin appreciating your expertise and your contribution. Victoria :-)

    Reply

  2. After 40 + years of dealing with attempts and depression myself, I still don’t share or speak out simply because I WILL lose my job. I have a position which simply does not allow mental illness, no matter how it’s treated. Therefore, I keep quiet and deal with it.

    Reply

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