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a NAMI vent and a word of hope

This is a place to talk about what it's like to live with or support someone labeled with a psych diagnosis and/or struggling with madness. How do you help someone in crisis? How do you make sense of being told conflicting things by different healers?

a NAMI vent and a word of hope

Postby toleranz » Sep 01, 2012 7:09 pm

As I have posted in a previous thread, I'm a longtime Icarus follower, but until recently have not posted on the boards. My daughter received a diagnosis of Bipolar Disorder with Psychosis. After trying the mainstream medication treatment, we (and when I say we it as very much a team effort) decided meds were not the answer. I have spent the last 6 years learning everything I can about radical mental health and my kid (22) is now off meds and doing much, much better than her years on meds. Literally my world is radical mental health. It's my passion and my work these days.

I just recently found my NAMI binder from back in the day when I took their family classes. I ended up dropping out because I disagreed so strongly with almost everything they said. Currently my daughter and I are creating a book for people supporting others through extreme states and crisis. Our book will stress noncoercive and non hierarchical methods of support. In an effort to construct our book we are deep in research, reading our old journals, and going over the vast array of info I have collected over the years. Today I cracked open the NAMI binder and became even more enraged over their methods than I was back then. If I had followed their advice and thinking I firmly believe that my daughter would be dead or in the hospital, a professional mental patient at best.

I'm not sure what my point of this post is other than to again encourage people to not give into the fears that are heaped upon you when you try something different. It makes me sick to think of what could have happened if I had forced my kid to stay on drugs. She gained 60 pounds in 2 months and had every side effect you can imagine AND got worse, rather than better. I was just told that she needed more drugs. I was told she would never be okay. I was told that by not forcing her to take her meds she would kill herself. I was told that if I let her go through her process I would encourage her to keep getting crazier and each time she had an extreme state her mind would slip a little further away. I was told she was ill. I was to treat her as a patient that didn't know what was best for herself. Maybe the fact that we are longtime unschoolers made it easier (though easy is NOT the word that I would use) for me to push through my fears when everyone was telling me I was wrong. All I know is that I'm eternally thankful that I did.

I just want to make this post to encourage all the family members, allies, and friend who are playing a support role to stay strong and try not to give into the fears and pressure you will face from society. Noncoercive support and honoring that extreme states and crisis is a part of life will pay off in the long run.
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Postby _ » Sep 01, 2012 7:18 pm

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Last edited by _ on Jan 20, 2014 8:39 am, edited 1 time in total.
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Re: a NAMI vent and a word of hope

Postby scatter » Sep 01, 2012 11:33 pm

like like like

some earlier threads on the NAMI theme:
viewtopic.php?t=9851
viewtopic.php?t=10025
viewtopic.php?f=111&t=21231
"Bipolar I with Psychotic Features", but somehow that just doesn't seem to capture the essence of the whole dilemma.
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Re: a NAMI vent and a word of hope

Postby toleranz » Sep 02, 2012 12:50 am

Thanks, Scatter.

I just read through a couple of those threads. I have so much to say on NAMI. My last night there, before I dropped out, I got "permission" to read something out of my zine. They didn't realize that my message was going to be vastly different than what they pushed. At the end of my reading almost everyone in the room was crying. I hope I opened a few minds.

I think what happens in NAMI is people come there because they are afraid and desperate (as I was) and they find community and then they don't question what is being presented. At the beginning I was just so thankful to have other people going through what I was going through that I overlooked things that bothered me. I don't know if you (or others) have been to those classes, but you aren't allowed to argue or really ask many questions. One thing that struck me is that they tell you at the start that you aren't even to share your binder with others, instead you are to encourage them to take the classes. That caused me to get my guard up. It felt like a cult! I was surprised that they let me read my piece, though I'm sure if they knew my message they most likely would not have.

Reading through my binder years later I'm struck at just how condescending their message is. People in extreme states are "mentally ill," they will never recover and they need their meds. There are even scripts in the binder on how to encourage your loved one to take their meds and how to use tough love if they don't. I had to stop looking at it because it was just too upsetting to me right now.

Okay, I will stop now because I could go on and on and on!

Yay for Icaurus!
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Re: a NAMI vent and a word of hope

Postby fightforroses » Sep 02, 2012 9:44 am

I'm really glad you're doing this and that you read your work to the NAMI group. That sounds really upsetting, their materials and their methods. I find it hard to care about anything right now but I just wanted to express my gratitude that you're doing this.
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Re: a NAMI vent and a word of hope

Postby furstone » Sep 02, 2012 10:05 am

Reading through my binder years later I'm struck at just how condescending their message is. People in extreme states are "mentally ill," they will never recover and they need their meds. There are even scripts in the binder on how to encourage your loved one to take their meds and how to use tough love if they don't. I had to stop looking at it because it was just too upsetting to me right now.


I love your posts, toleranz.

I am seriously considering making an Avaaz petition or something that calls for NAMI to stop using the words "mental illness" and offer non-biopsychiatric perspectives to the people that seek support from them.

They have a new President, http://www.madinamerica.com/2012/07/mad-in-america-blogger-elected-president-of-nami-2/

...and I really don't see how a person who spoke alongside Whitaker back in May could abide with language like this:

What is mental illness?
A mental illness is a medical condition that disrupts a person's thinking, feeling, mood, ability to relate to others and daily functioning. Just as diabetes is a disorder of the pancreas, mental illnesses are medical conditions that often result in a diminished capacity for coping with the ordinary demands of life.

Serious mental illnesses include major depression, schizophrenia, bipolar disorder, obsessive compulsive disorder (OCD), panic disorder, posttraumatic stress disorder (PTSD) and borderline personality disorder. The good news about mental illness is that recovery is possible.

Mental illnesses can affect persons of any age, race, religion or income. Mental illnesses are not the result of personal weakness, lack of character or poor upbringing. Mental illnesses are treatable. Most people diagnosed with a serious mental illness can experience relief from their symptoms by actively participating in an individual treatment plan.


(from the NAMI website, main tabs...)

All of this "mental illness" business came about with the help of E. Fuller Torrey, and the NAMI families ate it up, because they had not been pleased with the sense that the family environment could somehow be "blamed" or held responsible for the troubles experienced by their loved ones...it's like an extreme backlash to the myth of "refrigerator mothers" causing schizophrenia..."It's not my problem. It's your problem."

(when in reality, much human struggle is the result of much bigger problems...)

NAMI claimed that a biopsychiatric perspective, captured in the term "mental illness" would decrease stigma, by "making it like diabetes" (which is an actual medical condition, that can be measured, and specifically treated and is thus not at all like "mental illness.") but, it actually inceased stigma, by putting forth the idea that a person "has no control" (thus needs to be controlled) and that just ties right into all the other ugly myths of the "potentially dangerous mental patient" that folks like Torrey rely on in their pharma-funded "treatment advocacy" and which supports coercion and force to the extent that...

sigh...yeah, you know...

I'm so super-stoked about you and your daughters project. it sounds like an awesome process, going through old journals, speaking honestly...really beautiful.

hope y'all are having a good weekend.
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Re: a NAMI vent and a word of hope

Postby furstone » Sep 02, 2012 10:28 am

sorry for the double-post on this, but those old NAMI threads are great, scatter. full of perspective and resource-of-thought.

Letter to NAMI Criticizing their Messages Please Distribute!

by Steven Smiles » 27 Nov 2007 20:47

Greetings,

I have written a letter to NAMI criticizing some of the messages they promote and actions they support. I have attached it here as a Word file (too big for PDF!).

I sent it to NAMI in Vermont, where I live, and have since been engaged in an open dialogue with them. Though they have stated their position clearly to me - "mental illness is a neurobiological-based illness" - at least they are open to listening to another side.

In any case, I thought others might find this letter useful as well, especially if you are critical of NAMI or the medical model of madness. Perhaps you could send the letter to your local NAMI people as well...


I couldn't find the attached letter, but it seems like Steven must write some good letters.

My NAMI story is that they supported my scared and confused parents by advising them have me forcibly committed and that really wrecked our whole family, and super-fucked me up for a good long while. I am hoping that some of the new practices (non-biopsych family support, new approaches to psychosis and responding to emotional crisis) will help NAMI to actually help families...that might be optimistic. Then again, some of the people involved in the "local NAMI" are pretty responsive to non-medical model ideas, some chapters are. Open dialogue is a good place to start when seeking to shift worldviews.

okay, I've spent enough of this lovely day thinking about NAMI...
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Re: a NAMI vent and a word of hope

Postby katmold » Dec 04, 2012 4:01 pm

sometimes the popular doesn't seem so. I am glad she is doing better, there is always a cash crop, and if people are only offering black and white decisions, creating a versus, environment, it is about greed, instead of proper informing of consent. I am so sorry for your story. I was shoved on a med, by a psychologist not a doctor and didn't get the full story about what they were pulling until I read a story from Jim Gottstein, in which this woman was being consistently tested on and didn't know it. So I called to get this prescriber's crendentials for giving out meds and she just didn't have any. neither did the case manager, neigher did the therapist--when I talked to the doctor it was real calm, just this might help, if you need it, it is there--but my mother was always pushing me to take it, and showing her bigotry of the mentally ill, if I call her mentally ill, she starts yelling and pours another drink, but she will pack me full of whatever stock portfolio she finds convenient. creepy lady. I am glad your story is the type that you were able to help your daughter, I have had to finally say goodbye to my creepy drug pushing family. all illegal drugs came from bigpharma, and these necessary cures can equally be, just as illegal.
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Re: a NAMI vent and a word of hope

Postby red sunday » Jul 02, 2019 9:37 pm

damn, I wish my Mom would've been like that. the first thing she did was drop me off at a Nami mental hospital and leave me there on and off for years on end.
"I'm not crazy---my reality is just different that yours." --The Cheshire Cat from Alice in Wonderland.
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