CAMHblog

First of all I want to apologize for the confusion of my last response, I had pasted in the original response to me in an attempt to make it easier to respond and ended up making it more confusing in the process as I forgot to clean it up.

CAMH - it's hard to take you seriously as a leader in challenging stigma faced, and quite frankly Bell for that matter.  As when I reached out to your organization I was unable to find any answers or help.  And Bell, because after working at a call centre of there's, I was basically forced to quit or be fired because of my deteriorating mental health.

Despite reaching out for help time and time again over the past two decades, I have been consistently and constantly told that I was not deserving, I wasn't ill enough, I didn't meet all the criteria.

So forgive me if I find a lot of what you teach suspect.  But if experience has taught me nothing it's to question everything.

Since you seem so intent to repeat your message over and over again, that thousands took place in conversation, I will reiterate that most of the dialogue that happened was superficial.

I attempted to follow the scheduled chat you folks ran on twitter - only to find it impossible because all it was was a sea of ReTweets's that you were holding said scheduled chat..  Which made it impossible to actually participate.

Then through out the day, despite the efforts of many that I saw to actually start dialogue about what needs to be changed, the messages that were RT'd were the one's of people memorializing the people they lost, or why they're challenging mental health stigma. But none that I saw, were about working the problem, talking about the challenges faced in regards to access, or many other problems with stigma within organizations - including yours.

It's wonderful that you think this is actually making a difference, but all I see is a lot of talk and not a lot of action, and a lot of free corporate advertising. I have had to fight tooth and nail for the better part of two decades and am just now starting to see results, from what Bell made it look like, is that all the pretty white straight-seeming people were able to access help as soon as they asked for it.  And mostly the only problem talked about was depression.

This is not the lived experience of most people surviving with mental illness, because most of us don't have pretty stories with happy endings of how wonderful it was to have support, and to get help when we asked for it.   The story you're putting out there makes people think they'll get the help when they ask for it, which is quite frankly untrue.  Of course, unless all they need is an SSRI or have the money to pay for private treatment.

Not to mention the thousands of people who work, volunteering because they feel that other's need to hear their story. And those people are thanks and 'appreciated' so much for sharing their story to help other's, but there work goes largely unrecognized as they go home to a disability cheque that barely covers their bills - and the people thanking them pat themselves on the back for providing a space where they could be heard and go home to the suburbs in their SUV's. 

Am I angry, yes, I am very angry, and so should every one else.  The mental health system in this system in this country is broken, I would argue beyond repair, but I am doing my best to work within it to try and fix it and change it.

Yes my voice is angry, and it's loud, and it's justified, and it has a point. And I will not be pandered to, and I will not be placated. And despite the fact that my name will be forgotten, and that i might not have much of an impact, I will not shut up either, because sugar coating this issue is not helping.

Following Bell Let’s Talk we were grateful to Alicia for writing this post as our first guest blogger from the advocacy and lived experience community. She is a tireless and inspiring volunteer at CAMH and many other organizations.

As we see it, the goal of Bell Let’s Talk is to initiate discussion, raise awareness, and to provide space for people to share their stories on major networks with broad audiences – this happened throughout the day. We were also encouraged by the many people who shared their experiences and supported each other on our Facebook page: http://on.fb.me/15jbjVM

David, for someone like yourself who has been involved in these issues for some time, it is understandable that it can seem like "talk" is all that happens. And yet many people are at different stages of engagement with these important issues. Thousands of Canadians participated in discussions about mental illness and mental health - many for the first time. Alicia’s post reminds us that widespread awareness building and discussion are important steps that lay the groundwork for tangible improvement.  

That's so very wonderful for you Alicia, and I am glad that you have found the ability to turn your misfortune into a way that benefits you.  Also, that's wonderful that you had access to talk on TV specials about your illness. 

But you need to see this from the other side, which many people involved in the Bell Let's Talk campaign refuse to do.  Many of the people who tried to speak out and find a voice on Bell Let's Talk day, to share their own story, were ignored or silenced in a sea of tweets about how we need to talk about mental health. 

Hi David – I agree that talking is a first step in the longer road to improving access to treatment, but it’s an important step. Being able to talk about my ongoing experience with mental illness, online and through the MTV Impact special that aired on Bell Let’s Talk Day,  has made me feel that I’m contributing something and hopefully helping others. So their stories were lost, in the sea of people telling them that they need to talk about mental health.

As the day started, I found myself overwhelmed at first at the people tweeting as much as they could.  But it quickly turned into frustration when the only dialogue I was actually able to have that day in regards to access to mental health, wasn't even with a Canadian Service Provider. 

As far as the point about 'emo culture', it was wonderful that you were able to have something to identify with.  Which is really important to any one that is struggling.  But I still maintain the original way you brought it up is very dismissive and thus stigmatizing in and of itself.

And really you missed my point, I am saying the people that advocate should not volunteer, as oppose to getting paid for the work that they do. Volunteers are rarely appreciated it, and often brushed aside, they might get a pat on the back and a smile for all their hard work.  Then the volunteers have to go home to their tiny crappy apartments that is the only thing they can afford on their disability cheques, while the social works get to go home to the suburbs.

My hope is that people with mental illness start getting taken seriously, and start speaking up and out when they get treated like children, but the people who are suppose to help them.  Service providers, social workers, therapists, doctors, all of those people so often do not appreciate or listen to us, or listen to us when we say there's something wrong.

Lastly, a couple of distinctions that I think the people of the Bell Let's Talk campaign need to be made aware of, is that mental health and mental illness are not the same thing.  As well, mental illness includes a lot more then just depression and anxiety, and I am tired of  seeing the people who are suppose to 'get it'  when they are missing the point. 

Talking will get us no where unless part of that discussion is coming up with how to solve and implement solutions.

Hi David – I agree that talking is a first step in the longer road to improving access to treatment, but it’s an important step. Being able to talk about my ongoing experience with mental illness, online and through the MTV Impact special that aired on Bell Let’s Talk Day,  has made me feel that I’m contributing something and hopefully helping others.

When I was writing about the “emo” culture, I was sharing how I felt when I first learned I had a mental illness. I was worried that people would see me as an “overdramatic emo kid” (not that I think emo kids are overdramatic) and not take my struggle seriously. I identified with that subculture at the time, but as you say, there was a hurtful backlash that got picked up in the mainstream culture.   

I hope you keep volunteering your time helping others. I also do lots of volunteer work in the hope that sharing my story will help others feel they can talk about theirs and not suffer in silence. 

You're right - fighting mental health stigma is not easy.  Neither is being honest about one's own journey in recovery, considering some of the toughest stigma that those of us with mental illness have to face, are from within the very system that is suppose to help us. 

I have to say I am disappointed that you would point out 'emo kids', not because I am one, or was one, but because what happened with the 'emo kid' phase in pop culture, the mocking of the subculture that took place was all based on mental health stigma. 

Even yourself classified them as 'overdramatic' which is quite often a phrase used to label someone who has a lot of trouble regulating emotions; which can be symptomatic of a mental illness.  A lot of the ways that emo kids were openly mocked, was making fun of self harming behaviours, suicidal ideation, and mocking of depression.

Even if you didn't identify with the culture, or how 'they' acted, the way you cast them off is very dismissive of the lived experience of many people. 

So often we talk about how worried we are if people find out, as if I should be ashamed that I have dysthymia, ADD, BPD, GAD, PTSD, SP, BDD, oh... I think I am missing a few labels that have been thrown at me.  But I am not worried about people finding out, what I am worried about, and tired of, is not being able to access the treatment I need to get better, and having doctor after doctor send me to someone else all while I don't actually get any real treatment, nothing to help me overcome my most troubling symptoms.  It would be different if this had only been going on for a year, and not the 20 years I've been dealing with it. When I try to get answers and try to hold someone accountable for the way I've been treated, I am labeled as difficult and manipulative.

You talk about resources that are available, but where are these? I've gone to CAMH in the past and was told that because I wasn't suicidal they couldn't do anything for me.

Do you know what else is a huge problem?  So often after being on this journey to recovery so many of us want to help.  We want to make sure that people have a place to go, that we let them know you can get better. They just need to hang in there. However, so often this work is unpaid and undervalued.  We're suppose to work for free, and we do, we volunteer our time because we know how broken the system is and it hurts our very souls to see others suffer the way we have. 

This whole 'Bell Lets Talk' campaign was just a way to make people who don't have mental illness to feel better about themselves, to give them the appearance that they are in fact making a difference. 

But on Bell Lets Talk day I saw very few actual real conversations take place. Most of the dialogue that I saw was people saying that we need to talk about, saying that we need to change.  But what? What do we need to change? Very few people talked about that, and the one's that did were largely ignored.  Some of us tried to voice are lived experiences, and talk about how things are broken, some of us tried to brainstorm solutions. 

Most of us got no where with it. 


Change does need to happen, stigma needs to be reduced, treatment needs to be more accessible, we need to hold our caregivers accountable and expect them to be transparent.   We need to do a hell of a lot more then talk.

@davidogarr

Hi my name is Patricia, I have very experience about this and help friends and they relative and refered to other place and emergencies phone numbers and etc. etc. include to my adult childrens (3) but was vwry dificult with they biologic father when he is the number 1 need help and treatremente ( for stigma society the most latin man they dont acept have mental emotional problems incluide  some relative from  my family backhome....is very nice from U and hope is not afect what people say when U are at CAMH  volunter department,because is very tipical latin people (friend,family  gosipp about it) if U like contsct  to me my e-mail is: pjankovits@hotmail.com and God Bless!! PD: am sorry my gramma is not very diplomatic!!

Hello,

My name is Shelly.  I have major depression with panic disorder.
I would like to help those out there suffering and need somebody to talk to.  you can email me shellyfabrizio@gmail.com  or twitter @shellymercury 
I am not a professional but the best medicine more me is talking to others who are experiencing similar problems.
If you wanna talk, I'm here.

xo Shelly