How Families Going Through a Mental Health Crisis Should Be Helped

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Families whose youth or young adult begins to show signs of psychosis are plunged into a chaotic and frightening world. The confusing and usually very changed son or daughter is hearing voices, is extremely fearful, withdrawn or is even sometimes aggressive. Exactly where to find help in most communities is not at all clear — and in fact, most communities have yet to adopt practices that hold hope and support and mental health interventions that are geared toward working with just these “early psychosis” dynamics.

One state that has a very different look to it is Oregon. Nearly 20 years ago, some visionary professionals read about the work of a psychiatrist in Australia, Patrick McGorry, who had developed an approach that seemed like what families and their young person needed. The program that they developed was called EAST — Early Assessment, Support and Treatment. It evolved into its own model over the next couple of years and was clearly successful in restoring health and functioning in school and early work. One example of this success was a young man who had been a popular high school athlete began to talk “strangely,” became angry easily and distrustful of his father. There was an incident in which he began to threaten his father with a shovel in the family’s backyard. The family was referred to EAST and, to make the story short, two years later he had completed nursing school and was working as an RN.

These kinds of stories should be typical in all parts of the country. During my tenure as Oregon’s state mental health commissioner, I placed a $4.3 million request into my budget and worked with the EAST program and key community partners to get the funding approved to expand EAST into what became the EASA Center for Excellence. EASA now provides clinical training and consultation to every county in Oregon — 27 local projects in all. It helps these projects connect with family physicians, schools and other community resources to help families know about and get involved with them.

The Center for Excellence is based at Portland State University’s School of Social Work and the key trainer and researcher, Dr. Ryan Melton, has agreed to present a webinar describing how the programs work and the research data on the outcomes from the nearly two decades of experience in Oregon’s approach — one of a kind in that it is the only program accessible to virtually all families in the state regardless of income or insurance coverage. The webinar will be online and live on April 28. More information is available here. Early registration is encouraged because capacity is limited to 200. The webinar will be available a few days after April 28 for those who cannot participate in the live event.

For more information, contact [email protected]

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My Reality of Hearing Voices

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Editor’s note: If you experience suicidal thoughts or ideation, the post below may be triggering. If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255.

Every night before I go to bed, I check there’s no one hiding behind the shower curtain or in the wardrobe. Just as I am about to drift off, I hear them. Voices lingering in the walls. Muffled chattering coming from afar. I stay curled up in the same place, whispering for them to leave me alone. Not tonight, I beg. I lie awake for hours trying to make sense of the noises filling my ears.

Some days they get loud. I’m making breakfast when the bellowing comes. “Fucking hell you’re useless, jump out the window already,” or “Charlotte there’s someone watching you outside.” Screaming, I clasp my hands around my ears and fall to the floor. They shout louder and louder. I’ve been told they are not real many times, but when the medication wears off and they start bickering about why I’m not dead already, it’s hard to ignore the fact they’re just in my head.

My Facebook is full of pictures of me smiling with friends. No one sees the me standing in my living room throwing things around as I tell the loud booming voice to shut up and leave me alone. When I have a psychotic episode it isn’t all sunshine and roses — it’s tears and screaming and losing a grip on reality. It’s becoming paranoid and being too scared to do anything.

To all the people who have witnessed me having a meltdown, I’m sorry you had to go through that, but I’m so glad you were there to comfort me. Without you, I wouldn’t have been able to challenge the screeching voice. I wouldn’t have been able to stand up and say, “I’m not listening anymore.” Thank you to the people who assure I’m better than the voices I hear. I’m better than what they tell me.

To me, hearing things that aren’t actually there is a scary, scary thing. I am filled with paranoia on a daily basis. That’s why I am so grateful for the wonderful friends and family in my life. They give me the hope to live.

If you know someone who’s experiencing things similar to what I’ve talked about, then please tell them it’s all going to be OK. You can beat the voices. They took over my life without a second’s notice, but now I’m taking back control.

My names Charlotte. I’m not my mental illness. It’s just a small part of me I acknowledge is there but don’t let weigh me down. I’m a fighter and survivor. If you’re ever struggling, just look at how far you’ve come and realize you can go a hell of a lot further.

If you or someone you know needs help, visit our suicide prevention resources page.
If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

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The Power of 'Healing Voices'

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Mad Pride is a mass movement of the users of mental health services, former users and their allies. Mad Pride activists seek to reclaim terms such as ‘mad,’ ‘nutter and ‘psycho from misuse, such as in tabloid newspapers. Mad Pride activists seek to re-educate the general public on such subjects as the causes of mental disabilities, the experiences of those using the mental health system and the global suicide pandemic.” 

One of our hopes in producing the award-winning social action documentary “Healing Voices” was that the film would lessen fear around altered or extreme states of consciousness, such as hearing voices and seeing visions, what is often called “psychosis” or “mental illness,” to an extent that people would feel freer to talk about these experiences openly with family, friends and neighbors — that they would come out of the closet, so to speak — and even feel a sense of mad pride.

I have to admit I was terrified to talk about the details of my experience with my neighbors. I was brought up by two wonderful hippies who named me after an African antelope. We lived in the low-income section of town. Despite working hard at menial jobs, for the most part they did not have two pennies to rub together. As a child, I remember sometimes there was nothing to eat except tortillas and mustard. 

Here I am now, lucky and privileged to have a good job and own a house in a nice neighborhood. It is also a neighborhood that is fairly close-knit. We all know each other. We have neighborhood yard sales together. We’ve played on the same city league basketball and softball teams together. We have a weekly poker night. But I still had visions of my neighbors finding out about my history and ostracizing me, and my family, and possibly running us right out of town.

Early in 2014, things came to a head. I had just been through an intense altered state in late 2013, what I prefer to call a vision quest, that had ultimately landed me in a hospital for a week and on high doses of heavy-duty psychiatric drugs. I knew I was sluggish and not myself, but I had no idea what I looked like from the outside. I was about to have a rude awakening.

I walked across the street to my neighbor’s house, finally feeling ready to face the world and to participate in the weekly poker night. It would be good to feel connected to people again, to try and move on from the feeling of being different, of being outside, to move on from being hospitalized for a third time. However, this time, I did not feel like one of the guys joking around. I felt like the joke. They asked in a teasing way, “Are you on drugs?” “You look doped up!” Well, I was on drugs, but I didn’t feel like it would be well received to talk about why and what I had just been through. I made up some excuse and left that night feeling like an outcast.

Needless to say, I was quite nervous about what my neighbors would think when we released “Healing Voices” in 2016 by holding several grassroots screenings, including several not far from where I live. My story, including my experience in 2013, is featured as part of the film. I was not out with them about a big part of my life, and yet here it was, on the big screen for everyone to see. I felt naked. And I almost didn’t invite them. 

Then I thought, if I can’t do this, what’s the point? It’s one of the main reasons we made the film. The time had come for me to own my experience and have a sense of pride about it, with everyone, not just the people in my work and personal life who already know about these issues. So I invited my friends and neighbors. The ones who I had never shared deeply with, still with the very real fear that they may not want to have anything to do with me after seeing it.

To my surprise, without exception, they loved the film. The movie has brought us closer together — not the opposite. I think this is a testament to the movie. It humanizes people. Here, I could see it in my own life, in real-time: the power that film has proven to have.

A by-product of lessening the fear that can separate people, is an increased curiosity and openness to one another’s experiences. That night at poker early in 2014, I had wished that my neighbors had been genuinely curious and empathetic about where I had been, and what I was currently going through. I had wished they had showed that they cared. But it seems that we are now taught in our society not be curious. That if someone is behaving differently, they need to be referred to a professional. We have lost a sense of community power around these issues. So often this leads to children being separated from parents, marriages being torn apart and yes, neighbors being ostracized from their communities.

Our vision for “Healing Voices” has always been to create a social action film. We initially released the film in April 2016 via a global, grassroots screening event. All of the initial screenings (130 in total) were produced by local, community partners. The primary goal was to mobilize the mental health community, our base, so to speak, by demonstrating how the film could be used on a community level to spark dialogue around mental health issues. We asked the question, What are we talking about when we talk about “mental illness?” Our goal is to change our conversation from one of despair and fear, to one of hope and healing.

The screening in Oakland was an example of the next step for our social action film. The first of what we are calling “Recovering Community” events. Now that we have mobilized our base, it is time to burst out of our mental health bubble, to fully emerge from the closet, because these issues touch us all. We want to change the conversation, but we also want to broaden the conversation. Because mental health issues are not a singular issue.

One of the major themes of the movie is this idea of “canaries in the coal mine.” Canaries sense danger and then sound the alarm. In my experience, this is an excellent metaphor for what happens when people experience altered or extreme states, what the doctors call “psychosis” or “mental illness.” What if instead of labeling these experiences we took a more curious approach? We might find some people are experiencing significant danger in their personal lives. This could be in the form of abuse, trauma, neglect, lack of love, poverty, the threat of poverty, the list goes on and on. The canary is sounds the alarm:  something is not right in my life!

Our intention in that this next global event — our “Recovering Community” screenings — is to bring as many different movements together as possible. LGBTQIA, Civil Rights, Disability Rights, Environmental Rights, Addiction Recovery, Criminal Justice, Spiritual Movements, etc., these movements are all connected. And it’s heartbreaking to me that progressive movements still have so many misconceptions about people who are labeled “mentally ill.” Even within these movements, it sometimes feels like we are the one group where it is OK to label us, to forcibly “treat” us, to lock us up. Well, while it’s time for us in the Mad Pride movement to come out of the closet, it’s also time for the so-called “normals” to not only welcome us into these great progressive movements, but back into the human family.

Before I conclude, I wanted to return to the local, to my neighborhood, because I omitted something important. There was actually one neighbor in 2014 who reached out, who made me feel more human. He noticed that I wasn’t doing well that night. He texted me and offered to take me out to lunch. At lunch, he shared about his own struggles with depression and how running had basically saved his life. He is the reason I now jog. I am now a regular runner, thanks to him. I find it grounds me like few other things can. He was a big part of giving me the courage to share more of myself with the rest of my neighbors, and a big reason why I feel, more than ever before, connected to them and to other people.

You see, a simple act of curiosity, a simple act of kindness, can go a long way towards helping us recover a sense of community. 

So I challenge the reader to truly listen to someone else’s experience. In doing so you may learn many profound things, not the least of which is that madness can be difficult and painful for sure, but also quite a beautiful and spiritual part of the human condition. You may get in touch with your own madness and realize that there is no us and them. Only us. And who knows, you may even start to feel some Mad Pride!

Watch the “Healing Voices” trailer below:

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Screenshot via “Healing Voices

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When Psychosis Feels Like a Bully

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I always question whether I have done something so terrible in my life to have deserved developing psychosis. I was bullied badly for six years straight when I was a child, but it feels like it hasn’t stopped.

You’re fat, you’re so ugly! Why do you always do everything wrong? No one likes you. All your friends hate you. They’re plotting against you. Everyone wants you dead. They’re all in on the government’s plan to kill you! Don’t eat that, it’s poisoned.

The voices are an endless torture. You try so hard to keep yourself together, to just be “normal.” But it’s hard when it feels as though people are standing behind you, saying all these horrible things.

It’s exhausting. The bullying hasn’t stopped.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741.

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Wondering What My Husband Felt Like When He Experienced Psychosis

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I went away this weekend to a tiny cabin in the woods with just me, my children and my two German Shorthair dogs. We ventured two hours away from home down gravel and dirt roads to a little getaway with no real address on Google maps. Beyond cell service, but thankfully with spotty wi-fi in case anything would happen. We had a wonderful time swimming, kayaking, building campfires, playing in the woods and just being together out in nature.

I awoke at 2:00 am last night to the sound of pouring rain on the tin roof, thunder and lightening. I am not a worrier by nature. If my husband had been there with me in this storm I would have just closed my eyes and went back to sleep. Comforted by him laying beside me. I met my husband when I was 24 years old. Every adult vacation I ever went on was with him. He was my person. He was my protector. He was my everything.

So now I was wide awake looking at my sleeping children, one on each side of me. Two dogs at my feet. A panic filled my entire body. My mind raced with thoughts of… What if a tree falls on my car? What if the power goes out? What if, what if, what if? I kept checking out the windows into the blackness of the woods. This is not the city. You can see absolutely nothing out the window until the lightening strikes the lake. I stayed awake like this for an hour. Buzzing with fear. I made myself try to lay down and go back to sleep and went in and out of dreamland. I prayed for daylight. I asked my angel guides to protect my children, to protect this little cabin, to keep the power on, to protect my car so we could go home later that day as planned.

I laid there and realized. This. This storm in this little cabin is telling me his deepest secrets. It’s telling me how my husband must have felt during all of those nights he just told me he had insomnia. He did not “just” have insomnia. I have read in depth about psychosis, hallucinations, hearing voices, paranoia, schizophrenia and more. He felt the way that I was feeling only times 100? 1,000? He felt this buzzing fear in the darkness of the night except he saw demons sitting in the corner of his room. They were as real to him as I was. He heard them speak awful things. He kept quiet about it to not scare me and our kids. He kept quiet about it during the day because somewhere along the line we tell kids that to be strong is to fight through your fear.

Yes, sometimes it’s awesome to fight through your fear. But, if your fear includes seeing a demon in your bedroom? Don’t fight through that fear. That doesn’t make you any stronger. What makes you strong is telling someone. Get yourself help to make that demon climb out the window and never return. Do not sit alone in the dark with your heart beating, your mind racing, palms sweating. Say something. Scream for help. Fight to save your own life.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741.

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Paranoia Is More Than Just Being Nervous

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“Oh my gosh, I’m so paranoid my mom is going to find out I was drunk.”

“I’m so paranoid I’m going to get caught cheating.”

“I’m really paranoid I’m going to get lost in the city.”

When it comes to mental health, there are lots of words we try to get people to stop using casually. Bipolar. Crazy. Psychotic. I could keep going. We work to get people to understand that being sad is different than being depressed, and being anxious isn’t a lack of effort to fight off worry or deal with daily stressors. But we don’t talk much about how using the word “paranoid” casually could hurt someone.

Just like when people misuse words like “crazy” or “psychotic,” I don’t think people mean to be offensive or insensitive when they say they’re paranoid. So all I want is for people to hear me out and understand what real paranoia can be like and think before they use the word.

Paranoia is hiding under your bed because you think people are going to break in and kidnap you. Paranoia is sitting in your car for an hour because someone behind you left their lights on and you think someone is hiding in there, waiting to get you. Paranoia is not eating because leaving your room or apartment is just too risky. Paranoia is being convinced you just saw a car pull over next to you and its passengers are now planning to attack you. Paranoia is not trusting the campus police department to walk you back to your dorm because they might try to kill you.

I lived like that for about a week. After a few days, my friends and counselor convinced me to go back to the hospital for outpatient treatment and get my medications altered to help make it stop. It eventually subsided, and I was able to see just how absurd all of my delusions were. I was able to see I was delusional.

A psychotic episode is a scary thing. People can’t talk you out of it, and all sorts of fake ideas and experiences seem real. There are lots of pieces to an episode and not everyone’s experience with psychosis includes paranoia. But mine did, and just as I get hurt when people misuse words like “bipolar” and “psychotic,” it’s hard for me when people toss the word “paranoid” around. It’s a symptom of my illness, and it is perhaps the most debilitating.

I feel for everyone who has dealt with paranoia. It’s hard and scary and really misunderstood. I don’t mean to be someone being upset about people using all sorts of words that aren’t P.C. All I ask is that people remember how it might be upsetting for someone to be reminded of their paranoid episode or have it compared to a menial experience, and think twice before calling themselves “paranoid.”

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