Psychiatric survivor stories saved our lives

Psychiatric survivors are people who have survived mental health treatment. We did not survive our illness, we survived psychiatry. The difference between people with “consumer” stories and psychiatric survivor stories are just how you self-identify. If you feel comfortable saying that you survived the treatment instead of the “illness”, then you are in the group that has psychiatric survivor stories. That is all the more complex the distinction is. Some people identify in multiple different ways, according to a survey I did of 54 mental health advocates:

Who has their own psychiatric survivor stories?

Psychiatric survivor stories often include more than one identity

Psychiatric survivor stories often include more than one identity

 

Why psychiatric survivor stories are so important:

One of the key realizations that turned things around in my recovery process was the moment that I realized, “They weren’t going to help me.”  That everything the mental health system had to offer, they had already thrown at me, and everything else after that was going to be a repeat of the same.

The thing that kept me alive was finding my own psychiatric survivor stories. It was too discouraging to think of  a lifetime chemical imbalance, the story they were telling me. Instead I had to think about my problems being a normal response to an abnormal situation. Finally I realized my problems came from an existential crisis, trauma, drug use, lack of exercise, a bad marriage, and a poor job fit. As I fixed each of these problems one by one, I found my way out of emotional distress.

Recently I was touched by this incredible poem that I heard at Poetry for Personal Power, the program that I facilitate. At first I thought it was a suicide poem, but it’s more than that.

The violence witnessed in psychiatric survivor stories:

The message in that poem is that by coming to terms with what could have been, forgiving ourselves for not being able to save someone else. Forgiving ourselves for putting ourselves in the path of danger. This forgiveness is a way to move past it. To grieve what could have been so we can release the grief and the anger and build a new life. But at the same time honor the old life that could have been. And this poem is also about the violence. Ree Cee had her son beaten out of her by an abusive man. I had my chance to have kids beaten out of me by lies and deceptions and fear spread by psychiatric labeling. I’m now a parent to Rod’s kids, and I have a poem line about this to Emily, my new stepdaugher:

One: I’m too young to be a hippy, too old to be a hipster,
I just now got my chance being a parent and I never knew how much I missed her.
How perspective comes crashing down upon me, how my anger can warp and blister,
How I’m able to change the whole world, but not even get a chance to convince her
She’s cool. Or radical, or awesome, or riding a ROFL copter,
Or fitting in or standing out, whatever the moment is requring,
Cause I’m able to be inspiring to the whole world, but not her…

Recently I went through a spiritual emergency and had this spat with the Intercessory Team at my church that was helping me about the meaning of  the spirits attacking me. I had a story about the sprit being my missing son, which turned out to be a lie, but I didn’t feel like they properly recognized my version, or even listened to me. Much of the rest of this blog is how I realized the importance of psychiatric survivor stories as I struggled through this interaction. I told the church people:

 I feel like you are telling me that I’m being fooled and attacked and lied to and damaged. None of this is happening, but you as a team came up with some kind of “intervention,” without my input about how to help. I feel like you as a team didn’t trust what I was saying about the situation, enough that you didn’t even bother to let me update you before you came up with that long email plan.

The main trauma for us is invalidation of our psychiatric survivor stories:

Sunbeams over downtown Kansas City, KS, where I live.

Sunbeams over downtown Kansas City, KS, where I live.

My main concern from that experience, was that my interpretation of what was happening to me, got denied as invalid. It turned out I was wrong, but even so, I wasn’t heard. That is why I had to “walk from the table.” This is a problem shared by many, many people with psychiatric survivor stories, a group trauma issue that is almost universal. So, too, is cutting off our voice or closing down communication. We had to learn to trust our own experiences and voices to escape the tyranny of mental health labels and drugs that kept us sick. We had to learn to believe in our own story of a person who could get well, who could shuck the labels and the medications that were harming us.

And hurt people hurt other people. So often in our reflexive efforts to escape these situations we can hit back pretty hard. I am afraid to wholly trust most people because of this. Bruce Levine says that most people who end up with mental health labels are anti-authoritarians. This means we can only follow commands from people we trust. Trust comes from from 1) telling the truth 2) having my best interest at heart 3) making sense in a larger context.

What that Intercessory Team said and did for me showed they obviously meant well and their view made sense in the world. But I couldn’t tell if it was true or not. It didn’t match what I saw and heard and felt at that time. I didn’t match what other people I trusted told me. It did not take into account what I said was happening, my own internal experience and my voice.  So I didn’t know what to do at the time, except have a little mini freakout, I guess. Which eventually all came around when I realized that the spirit was lying to me, not the church people.

Closing down communication is tough for everyone with psychiatric survivor stories:

The other thing that makes it hard for me to trust is that when I calmed down, and tried to re-engage with the team, and “come back to the table,” I found that communication was cut off. I didn’t get any feedback on the poem I produced from their assignment to study psalm 91. I didn’t get any feedback when I tried to clarify what I was experiencing. I didn’t get any feedback when I reached what was stated as the desired outcomes, I.e. no spirits bugging me, the holy spirit of Jesus central to my being, and a sense of relief. Later I figured out that their email delay was pretty well justifed, but I had no idea at all what they were thinking, which really freaked me out:

Right now I don’t know if you are mad at me, think I’m crazy or possessed, think I’m victorious, think I’m lying, think I’m trying really hard, what. It’s really been bothering me trying to figure this out through the shutdown in communication.  I have no idea about a next step. Except to show up and talk to you. But keep in mind I’m in pretty bad shape now, not sleeping still and losing weight and having a hard time focusing and starting to run in circles and having lots of hallucinations.

So later on I got back in touch with the people, figured out I didn’t really need their approval after all, and figured out ways to get rid of the spirits bugging me, and finally got some sleep again.  But this lack of communication is really a tough one for me to handle in a lot of cases. For many of us, lack of commnication is connected to the trauma issue of our psychiatric survivor stories being denied.

Reccommendations:

Stickers on my friend's bike could well apply to all people with psychiatric survivor stories.

Stickers on my friend’s bike could well apply to all people with psychiatric survivor stories.

Listening: When talking to people with psychiatric survivor stories, make sure you hear their point of view. Ask them if they think you are listening to them enough. Verify multiple times if they feel their point of view is respected. If you’re the survivor, teach people who help you how to do this. Don’t work with people who won’t.

Communications: Keep lines of communication open.  A short acknowledgement can go a long way. “I got your email and I skimmed it but I will read in detail and respond more by Wednesday when I’m done with my next grant.” OR “Hey, thanks for calling, I wanted to call back but I only have about two minutes to talk right now and I’ll be able to talk with you more tommorrow.”

Disagreeing: It’s better to disagree with me than to ignore my story. Don’t worry, I can take the arguement, it won’t bother me. But completely blowing me off is going to put me through the roof.

Trauma: Know that according to some definitions, a mental health diagnosis in itself is traumatic, so 100% of the people with psychiatric survivor stories have trauma histories. That means sometimes I react in disproportion to the problem, because my mind has hooked onto a similar problem. Help me see that this is happening and don’t take it personally and do your best to distance yourself from me until I cool down.

Alternatives: Give me choices. For mental health, not just labels and meds, offer acupuncture, exercise, art, work, animals, spirituality, connections. For spiritual stuff I’m not sure how to do this since some religions have a central teaching that only their way is right. I guess maybe point out the options for different ways to study, different types of teachers available, etc.

Recognize who people with psychiatric survivor stories really are:

Key Identities from a survey of 54 people with psychiatric survivor stories

Key Identities from a survey of 54 people with psychiatric survivor stories. Graphic designed by Devin Zell using a word cloud which links size to frequency the answer was given.

 

 

 

 

Wordworks Blog Author: Corinna West

Corinna West is the founder and creative director of Wellness Wordworks, and is an Olympic Team Member and has a Masters Degree in Pharmaceutical Chemistry. Her Instant Peer Support might be the first in the mental health sector to remove the need for government and charity funding by creating a profitable interaction involving only our business and our direct customers.

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