Maybe It’s Time For A Manic Depressive Anonymous Or At Least Someplace We Can Go To Get More Than An Emoticon Of Support

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In 1989 I was diagnosed with manic depression based on symptoms which were about two years old. I went untreated for the next fourteen years. For most of that time I was unemployed, living in extreme (for Canada) poverty and the only thing which kept me from being lost into Homelessness was my ability to find a roof.

The only information about the disease came from occasional news reports and a couple of quick lectures from doctors. The only information about Recovery came from rumour and a few trips to the local library scattered over a decade and a half.

When it came to Recovering from a mental illness I was a complete ignorant. I knew the clichés, I believed in the artistic value of the disease, I believed the disease made me a deeper person. It didn’t.

Until just a few years ago the only way for people with Mental Illnesses / Diseases to learn about about Recovery was from a few authors, like Kay Jamison, who wrote about their research or personal experiences. But we only found their books if they sold enough to enter Pop Culture so we could hear about them on Public Radio and find them in a Chain bookstore… and lets face it, most of what was written was crap and only led to more misunderstanding and stigma.

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But that was pre-User Friendly Internet. It is only with the tech advances of the past few years where the Internet has allowed researchers and technology to actually study the diseases, but just as important has been the software development and user-friendly interfaces which has made it possible to share first hand experiences with doctors and medications and symptoms between the people with the disease.

Before I started my Recovery 3.5 years ago I watched, and helped, several friends try to recover from addiction. What I found by watching them and listening to them was there’s one essential tool needed to recover from an addiction and it’s the same thing We need as we recover from Mental Illness. What we need is Touch.

The central responsibility is ours. We need to use our moments of lucidity to prepare ourselves for our recovery. But once we do that, once we make the first step towards understanding the disease and how to move past it, we need Someone to help us. That’s the central principle of groups like Alcoholics Anonymous and Narcotics Anonymous and any other Addiction Rehab Program. A human being standing beside you.

But when people with a mental illness such as manic depression enter recovery we are, and have been, left on our own to figure out the labyrinth of the various Mental Health Systems we’re thrown into… right as we’re beginning treatment, which will be without a doubt the toughest physical and mental challenge we’ll face.

Essentially we are left to face a disease and the underlying issues hidden by the disease on our own. There’s a doctor whom we see occasionally, but then who? Who is there to Touch us, to teach us, to at least be in the same room with us and listen… to whatever. Who do we call when we’re sliding?

This is what an “Addiction Sponsor” is and what they are meant to offer:

“An addiction sponsor is a close mentor and example of sober living. Those in recovery can rely on an addiction sponsor during those critical moments when dealing with addiction becomes difficult. This addiction sponsor can help them to maintain sober practices.”

It’s exactly what we’re missing. Addiction Recovery programs have helpers, they also recognize the importance of Anniversary’s for someone who is Recovering. There are moments in our Recovery we should be proud of… like going a whole month without wanting to kill ourselves. How’s that for something to acknowledge? A good friend of mine, a long time ago, asked me to stand beside him when he received his one-year Chip from AA. In a room full of people, including his parents, he was recognized as having done something wonderful and worthwhile and difficult. That moment was all about motivation… not just to get to that point, but as a tool he could use later on to say “I may be feeling like a drunk now, but here’s this Chip in my hand which says I’ve survived and succeeded”.

So how can we have the same feeling of accomplishment, and the same support? I’m not sure, in the Real World, we can.

I live in a region of Canada which is pretty much the same size as Britain, but with the population of a medium sized airplane. In the Little City roughly ten miles down the highway from here there are AA and Narcotics Anonymous meetings in French and English which are both well attended, there is also at least one Addiction Recovery House.

According to a Canadian Mental Health Association website, last updated in 2006, there’s a weekly two-hour “Peer Support” meeting for people with mental illness, and that’s all… and it’s a $40 cab ride from here and back. Keeping in mind only 20% of the Canadian population will have a severe depressive moment in their life, and 2% of that group will be manic depressive, the likelihood of finding someone to be a Mentor in a “local” meeting becomes almost nil.

Blogs were created in the pre-HTML Internet Era, but that was three guys at DARPA. The current form of Blogging is only a few years old. It’s a new form of communication. How this works, how this exchange of personal information, how writing about how a medication effects me and how my Recovery can help your Recovery, is all brand freaking new. Nowhere, at anytime, have this many people with manic depression or any other Mental Illness been able to gather in the same place and say “this Treatment helped in my Recovery, maybe this could work for you.”

Or “I understand what you’re going through, I understand what an accomplishment it is to not want to die.” Or just “here’s a YouTube you’ll laugh yourself silly over.”

The feedback I’ve received through Salted has helped me to understand what Manic Depression is and how it can be controlled. I’ve also learned a lot about Recovery from blogs maintained by people Recovering from addiction and other forms of mental illness, and even other diseases such as AIDS.

I’m not entirely sure how it could be put together but because there’s an opportunity given by this User Friendly Internet Era to allow people with manic depression to connect to each other and learn from each other, I think we can at least collect information about what has worked for those of us in Recovery.

How useful are Offline support groups; what medications we use, and what side effects, benefits and harm have we experienced; how easy is it to find a doctor where we live, what financial support is there; what books or magazines should we be reading, or movies we should be watching; information about studies done on mental illness…

Most of this information is already out there (in here) of course, but mostly in clinical form from Associations and Institutes, or in instant message-style Members Only Forums and chatrooms where the best help you can expect comes in the form of emoticons and {{parenthesis hugs}}.

A site like PeoplesMD, where information on research into mental health issues can be accessed and stored, is only part of what I believe is necessary or possible. We don’t just need information, like a Press Release telling us we need to be in the sun more often. We need someone we know and trust to contact us when we’ve been rundown by a lack of sunlight… someone to remind us it’s okay to be depressed and there are methods of beating back non-bipolar depressions, to let us know maybe what we’re feeling at any given moment doesn’t have to be attributed to the disease.

Basically we need someone to say “I know you really want a drink, but if you take it you’re likely to be right back on the path to an early death… but you’ll definitely feel like you’ve been defeated.”

People just starting their Recovery need to know there will be hard times no matter what treatment they decide on, and people three years into their recovery need to be reminded that people get depressed when there’s no sun… we will experience natural depressions and not have “I’m depressed because I’m bipolar” to fall back on, which is a very difficult step in our Recovery.

There would be large obstacles to something like this, other than starting it, like the possibility someone being held as an emotional hostage… the Addict / Sponsor relationship is a complicated one. I’ve seen some pretty damaging abuse performed in some of those relationships.

But for now I’m more interested in how something like this could work, or even if it could work… there is a website for addicts which comes very close to what I’m thinking of, it’s called “Sponsor Search” and it’s a database to connect addicts in any given region to potential sponsors and meetings.

So… is it a possibility? Would it be possible to build an online buddy system where people could find support from human beings with a similar mental illness, not just press releases… a place where we could find a mentor… a place where we could publish posts about how we fought to get into Recovery… maybe even a place where we can ask questions of each others doctors, like I post a question and we bring it to our doctors / shamans / mystics / whatever for their answers.

Right now I think the biggest problem I’ll have is getting this explanation down to a few decent sized paragraphs… so if anyone has any ideas about any of this, or a suggestion on how to reduce this post to only a few paragraphs, please leave as long a comment as you’d like or post a response somewhere else…

.

...thanks.

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About Gabriel...

...diagnosed with manic depression in 1989, for the next 14-years I lived without treatment or a recovery plan. I've been homeless, one time I graduated college, I've won awards for reporting on Internet privacy issues, and a weekly humour column. In 2002 I finally hit bottom and found help. I have an 8-year old son, and a 4-year old son... I’m usually about six feet tall, and I'm pretty sure I screwed up my book deal. I mostly blog at saltedlithium.com....
This entry was posted in Bipolar, Bipolar Disease, Bipolar Disorder, Canada, Clinical Depression, crazy people with no pants, Depression, Health, Intervention, Lithium, Living With Depression, Living With Manic Depression, Manic Depression, Publishing, Salted Truths. Bookmark the permalink.

33 Responses to Maybe It’s Time For A Manic Depressive Anonymous Or At Least Someplace We Can Go To Get More Than An Emoticon Of Support

  1. thordora says:

    I LURVE the idea, and would totally be into helping. You’re always my go to guy for the weird questions, and you’re a huge help.

  2. Nita says:

    Amazing clear and objective post. That’s what I like about you Gabriel. You have the ability to see yourself objectively and know what is happening to you. At times I can’t believe you have a problem at all!

  3. Gabriel... says:

    And I Thordora, as your Infinite Monkey, totally enjoy helping in any way I can… some of the people who post regularly on your site have manic depression as well… if it’s cool with you, could you maybe ask them about something like this? About the idea of an online Bipolar Mentor thingee? I’d like to get as many ideas as I can…

    Thanks very much Nita… that’s what I love about you, it’s your ability to make me feel like I actually know what I’m doing. The thing about Problems is, once you start dealing with them in a real and honest way, they can be controlled. There’s no way I could be writing like this unmedicated.

  4. markps2 says:

    A few posts ago, you wrote of how two manic depressives should NOT hook up romantically.
    In that frame of mind I say I don’t know about mentors like in AA or NA groups. The appreciation and awards given out for of times of success like a month or year is a double edged sword. It cuts both ways. Its great in that it gives encouragement and recognition of a good work, but on the other hand it also put pressure to perform, expectations of being cured. I prefer one day at a time with the freedom to fail and fall from a shorter height.

  5. markps2 says:

    The computer ate my first post I think, I’m taking it as a mysterious reason behind it.

  6. Gabriel... says:

    Hi Mark, my system ate both of your comments… I have no idea why. It might have something to do with the government surveillance program, but I’m probably not supposed to tell you that.

    It’s the same idea in most Recovery situations… the idea is two people learning how to swim together will drown each other. The Sponsor in an addiction recovery program would be someone who has the experience of having learned the difference between drowning, treading water and swimming having already failed and succeeded and being able to pass on those experiences to someone just starting out.

  7. pistolpete says:

    I am both an addict and a person with Bipolar. I’ve taken part in 12-step programs off-and-on for almost 20 years. I was diagnosed with Bipolar 13 years ago and have occasionally been a part of support groups.

    My biggest desire to find role models who have rapid-cycling, mixed states Bipolar yet also (like me) maintain a full-time high-stress career, and are married with young children. From what I read of the statistics and hear from a variety of sources, I’m beginning to think it is inevitable that I go on disability and/or separate from my wife.

    I have found that persons in Bipolar support groups (even some on-line that I’ve found) tend to be lower functioning (through no fault of their own) and have different goals and expectations.

    In my case, I don’t need information so much as I need encouragement and motivation. I could use a sponsor who has years of high functioning under his/her belt in spite of the severity of his/her illness.

    If you identify any way to provide this sort of thing, please let me know.

  8. exactscience says:

    I applied for a job a couple of months ago which seems a little like what you are trying to desribe.

    The job called for the applicant to be a recovered service user. Basically to have been but no longer be with the mentalism.

    The job’s role was to be a member of the community health team and provide practical advice on dealing with the mental health system, recovery and therapies and to provide hope.

    Alas the jobs, only three in Scotland, are only a part of a pilot study at the moment.

  9. thordora says:

    pistol pete-it’s possible. Rapid cycling sucks untreated, but now, treated, I’m pretty much ok, and able to juggle my 60-70 hr/week job with parenting and marriage.

    It’s fucking hard though.

    Infinite Monkey, I shall maketh a post this weekend. It think it’s a FAB idea. You, and others helped me so much last summer-just knowing you were there and understood-it was like magic.

    I’m gushing now. Back to work.

  10. eleanor says:

    Hi Gabriel, thanks for directing me to this post.

    I can think of no specific organisations that operate how you describe for bipolar (I know the National Autistic Society runs a ‘befriender’ system for autistic and aspergers children, thats probably different to what you mean though) but I’m convinced that is an excellent idea. Having a mentor around to give that vital outside perspective on inner emotional turmoil would be of great importance to anyone in recovery from bipolar, if you didn’t already have a family/friends support system around you already who were willing to be that rock for you.

  11. bromac says:

    Thor had a post the other day about bipolar’s hanging out together. I replied to that in saying that I wish I had someone, just one person, who I was close with and had the same experiences as me. I always feel so alone in that NO ONE in my life knows exactly what I am going through…..no one in my life knows how my brain works. And it gets pretty damn lonely.

    So, like pistolpete, I want to know someone, really KNOW someone, closely, someone I can trust, who is bpII, wife, mother, and full-time worker.

    I think my therpist handles the recovery for me just fine, i just want a friend.
    (that sounds pathetic)

  12. dame says:

    This is such a good post, gabe — both logically and emotionally. I recall a deep, dark time where I inhaled the AA philosophy where they start their day as ‘i may drink again, but i wont drink today’. However I negotiated suicide in that respect. “Not today” became the mantra that ground the morning coffee.
    PPete also makes a strong and valid point … where there are valued resources, more often than not, they are struggling on a similar level, it can be a level that’s difficult for relation. And often simulate and stimulate additional depression. It’s rock bottom sometimes, where we can easily portray ourselves falling, settling, losing any resistance. Hence the sponsor ideal being so ideal… we cock our heads upward, we see height and an ideal and … survival. Someone who no longer negotiates the ideals of dying, but graduates to the … well, whatever they graduate to? They do graduate, don’t they? Please tell me they do.
    I wanna catch their caps.

  13. dame says:

    p.s. i’ve been researching ECT. I’d be interested in any opinions/experiences regarding such. Do you know anything about it, sir guru?

    (i giggled)

  14. Bryan says:

    Do you all have anything like DBSA up there? Check it out… Might be just what the doctor ordered.

    http://www.dbsalliance.org/site/PageServer?pagename=home

  15. Gabriel... says:

    Thanks for the link Bryan, I’ve never seen them before but I’ve gone through the entire site now. It seems like an important service and I’ll be contacting them this coming week to see how many people use it but it’s not what I’m thinking about… plus a large chunk of the website hasn’t been updated since 2006 and the only “blogs” I can find attached to it are blogs about the DBSA service, not about manic depression or anyone’s Recovery.

    The DBSA, and according to their website they do have “chapters” in Canada, would be something complimentary to a service like the one PeoplesMD wants to be… where PMD collects information regarding research into mental health and the DBSA collects information regarding offline regional support groups. Both, to me, operate like static Web 1.0 sites where I’m thinking of an interactive Web 2.0 service where those two acronyms are combined with interactive blogs written by people with the disease…

    I’m thinking of something like the DBSA on the left third of the page, PeoplesMD on the right third and right down the centre would be something like this site: The Progressive Bloggers of Canada where posts from blogs about manic depression could be sent… plus a place, kind of like what the DBSA offers, where Mentors and Sponsors could be found.

    Bromac: It does not sound pathetic, it sounds like something We All are looking for.

    exactscience: I remember reading your post, it’d be great if you could provide a link to either your post or to the job itself, just so we can see what the program is like…

    PistolPete: “encouragement and motivation” is definitely something most of us are missing from our pre-recovery lives through the start of our recovery and into the later stages… just in terms of having someone understand what we’re going through day-to-day is rare, especially in our offline activities. But, like addiction recovery, it’s important to know — even in the abstract — that we’re not alone…

    Dame: I completely forgot about “I may drink again, but I wont drink today”… a couple of people I’ve blogged with have used ECT as part of their recovery and my doctor has brought it up a few times as something I might benefit from. I’ll send over some links to blogs I’ve read…

    I’d like to continue to collect ideas and sites like the DBSA site from Bryan and the site exactscience posted about so I may make this into a separate page so none of this gets lost. If anyone feels comfortable writing about this on their own blog I’d appreciate reading the results…

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  17. zoom says:

    I don’t have anything useful to add or suggest, but I want to say I think it’s a brilliant idea.

  18. exactscience says:

    Uh, sorry Gabe I can’t actually find the formal job description and I only posted on the WRAP training that all the applicants for the post had to go through. For what it is worth the application form mentioned these:

    Each applicant must
    *Have experienced a mental health problem
    * Have a recovery story/journey
    *Have reasonable reading and writing skills
    *Be interested in Working as a peer Support Worker and be able to commit to complete a 10 day peer support training course

    I didn’t take part in the 10 day training but wrote about the pre-cursor WRAP training here:
    http://exactscience.wordpress.com/2007/11/21/wellness-recovery-action-planning-day-one/
    and
    http://exactscience.wordpress.com/2007/11/28/wellness-recovery-action-planningday-two/

    The job as best it was described really was to spend time with service users and help facilitate their recovery by being someone who understands what it is to be a service user and also what it takes and means to be recovered. One of the more nebulous parts of the job requirement: To provide hope.

    Hope that was helpful G. Take care dude.

  19. Lizzie says:

    I am barely able to take care of myself lately, but I think this is a great idea. I know encouraging others would lesson my battle with the stigma. Thanks for sharing your story, very powerful.

  20. Rich A. says:

    Hey Guys,

    I have been diagnosed with Bipolar Affective disorder in 1992.
    On Dec. 17 2006 I entered Narcotics Anonymous to deal with my drug addiction, so I totally know what you mean when you speak of the importance of a fellowship to offer support and wisdom for people suffering from a shared disease. There is something much more touching when I hear people share about how to cope with their disease than when a doctor simply fills out a script.
    Human beings with such a deadly and difficult disease need much more than that. It is also very helpful to know one can vent freely and be totally understood by a community of like-minded individuals.
    I live in the Toronto area, and am looking for a bipolar anonymous group to join or create.

    Best wishes to you all,

    Rich.

  21. Gabriel... says:

    So… basically something like this would be a decent idea..? I have a friend who works in the industry looking into how hard something like this would be to put together. If he says it’s doable and easy and can be done at no cost maybe we (him, you and me) can get something going… I’m going to make a page out of this post so if anyone has any ideas about how something like this could be put together, or if there’s anything out there worth looking at, feel free to leave a note… the link will also be in the sidebar.

  22. roomalone says:

    Meetup.com has tons of bipolar groups: http://bipolar.meetup.com/sitemap/

    There’s one in Toronto, Rich A.

    The Depression and Bipolar Support Alliance also provides support groups: http://www.ndmda.org/

    I attended several NDMDA meetings at one point in my life and found it very comforting to hear other’s stories. I remember one guy in particular who suffered from debilitating depression. He’d been helped by regular ECT treatments. That guy had some stories to tell!

  23. aikaterine says:

    Coming to the party late, I just found your notice of this post in my spam.

    So, I think that this could work. Here are the issues as I see them.

    First, it would take a while for people to start visiting the site. Which might be disheartening to anyone involved from the beginning. But, if we linked to it from our blogs we could drive traffic. I think it is a great idea.

    Now, enough words. I think it is a great enough idea that I am willing to fund it. Which means that I will buy the domain and have our company build the website (did you know we run a web development company – the fates might have had a plan here). I will work with you on setting it up, providing consulting and the like. But I cannot be counted on t0 actually manage it consistently, long term.

    If you want to give this vision of yours a try, and I sincerely hope you do, let me know. We need to start by picking a domain name.

  24. Gabriel... says:

    Honestly, I’m still just looking for ideas. I sent FairIt an email a while back asking if he thought it was viable but didn’t hear back… an IT friend of mine in Toronto said the technology would be relatively easy to set up… and with everyone using their blogroll as a mailing list the initial launch, getting people to sign up, shouldn’t be too hard.

    The idea as I see it involves getting a second party involved, like an established NGO like the Centre for Addiction and Mental Health or something like PeoplesMD… there’s an American group that looked interesting as well. We’d have to get decent endorsements… but that means having a well received Beta roll out and a relatively stable amount of contributors.

    Getting visitors comes after the contributors… getting contributors means explaining the benefits of being a part of the project.

    Then we make sure to set out the roll out plan in a manifesto/game plan so people know where we’re going… setting up the parameters will be important.

    The basic site, the v1.0, would be strictly a volunteer aggregator like Progressive Bloggers: http://www.progressivebloggers.ca/ where people could get to know each other. Basically we get people to put little buttons on their site and the aggregator would pick up their posts.

    Then, after we had established some kind of presence we’d roll out the v2.0 stuff.

    Basically, long term (two years), the idea would be to make the service important enough, and easy enough to maintain, so someone like the CAMH could just absorb it into their offered services.

    It’s been a few years since I wrote a white-paper…

  25. aikaterine says:

    I think that getting the site up and running should be easy enough and your idea of timescale and knowledge of what would be necessary to make it successful seems reasonable.

    I am offering to fund and build the site. I am fairly certain that you have both the drive and knowledge to run it.

    So, whenever you are ready to start building the site let me know. We will get it set up.

  26. darkentries says:

    Agreed. Should be simple enough to build.

  27. ahenobarbus says:

    bi polar is a real mental disorder.
    It is not curable by the faith healing of 12 step elixir.
    be careful of what you wish for. You may get it.

  28. Gabriel... says:

    The point, ahenobarbus, is to create someplace where people with manic depression can go to find out about the disease and maybe get some advice… no one is suggesting replacing treatment for hand holding.

    If you decide to come back maybe reread the post… “But when people with a mental illness such as manic depression enter recovery we are, and have been, left on our own to figure out the labyrinth of the various Mental Health Systems…”

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  31. Manicbud says:

    http://www.manicdepressivesanon.org
    found this site. US only. But this seems a direct copy of AA. A sponsor is a good idea. But we have a problem for life – I think we need a program. Not sure if it should be so 12-steppy or reliant on a higher power. But even though I think I am agnostic I would believe in fairies if it helped.

  32. Christina Chavez says:

    My mother is bipolar, and I identify as an addict . I have been looking at 12 step groups such as bpa anon, mad, etc. I have been having a hard time finding something local. The 12 step experience in recovery is a powerful one, and I desire that same feeling of empathy in recovery for my mom. This, the experts say is essential in the dual support needed for long term recovery.

    This is the first time, after becoming educated on BPD that group therapy has become a prority as medication is simply not enough. ALANON is there for famlies of recovering alcholics, and just as that disease ravages famlies BPD can also bring similiar pain.

    I will suggest this to my mom, but blogging is a new forum she’s not used to.

    In the mean time, I think its crucial for those of us who can and do understand blogging as a new medium to help us and our families struggling a place to share “experiences, strength, and hope”. I very much appreciate it that this blog is here. I’m going to give it a shot.
    It does give me hope, that though there are vast lags in the mental health feild in support for BPD, there does exist the people ‘s lives who remain impacted. Hence, there must be a push for it. Thank you so much for this post.

  33. Sebastian Monroe says:

    G’day mate, thanks for your blog. I’ve tried NA and AA for my addiction (I have a dual diagnosis) but it seems to conflict with my ability to negotiate my emotions and potential put me in hazardous situations. (I find I work best in groups I know intimately and where potential for surprise is limited. )
    I have found having some best mates who I can talk to about how they see my emotions from the outside. (I call them my emotional barometers. ) People who when I am at my worst (or best) I can feel without embarrassment.
    I would be interested to hear your views.
    Cheers.
    Sebastian

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