“How many parents would rather learn that their child has a life-threatening illness than hear that their child has been diagnosed with schizophrenia?”
Historically, doctors with burnout syndrome have been known to make these negative statements about schizophrenia at the time of diagnosis. If they’re wrong, they’ll re-diagnose the person as bipolar, but their comments still came true. Perhaps they’ve forced you to devalue your loved one.
I’m a mental health professional, and there’s nothing more exciting than meeting someone else who has experienced schizophrenia. I can immediately learn aspects of what they’re going through. That makes them a potential friend to me. I also come equipped with a handful of tools that I think might be useful to them. I’m also curious about what they can teach me about myself.
The strange thing is that I’m not alone in my worldview. Perhaps you’ve heard of the international movement called the Hearing Voices Network? Originating in the Netherlands from psychiatrists Marius Romme and Sandra Escher, the movement aims to normalize one of the many experiences associated with schizophrenia. The movement states that one in 10 people hear voices, and as a result, not everyone needs to be admitted to the mental health system. In fact, the movement has proven over the years that those who have been admitted can be incredible leaders and advocates.
Stereotypes You’re Upset With
Perhaps it’s unfair to blame anyone for responding negatively to the above dilemma because of all the negative stereotypes associated with the word schizophrenia. Many people think of a homeless person struggling to survive on the streets, posing, or carrying a cardboard sign under an underpass. Those who are a little more knowledgeable about the norm might think of a crowded boardroom and nursing home with nothing to do but smoke and drink coffee. Others in some states imagine a long stay in a state hospital, or a cycle through hospitals and homeless shelters. Of course, some might think of TV shows they’ve watched, like “Criminal Minds” or “The Guardian.” They might conjure up images of mass shootings that are spreading faster than our national homelessness crisis, which is so evident in the media.
Of course, as a parent or loved one, there is the stereotype of newly graduated social workers overseen by exhausted administrators who dehumanize their patients the moment their backs are turned. Perhaps it is difficult to watch this happen and easier to just stay out of it. Perhaps some of you will shield your children from this reality and try to care for them on your own.
Meanwhile, most of the public thinks that we as a nation are kinder and gentler in our industrialized times when we provided mental institutions. We all know that stereotypes are bad, but they still exist.
When Stereotypes Come True
I can relate. I worked in mental health and had great contempt for the lives that many of my clients endured. I respected my administrators, but it never felt right. Once I was able to practice independently, I became so successful at advocating for better care that it was one of the things that got me committed to a state hospital and thrown out on the street.
“You see, Tim,” I was told during my second visit to my psychiatrist, two months into my state hospital stay, “one time someone came in here and said they were being followed by the FBI, and we found out they were being followed. They hadn’t done much, but they were under investigation.”
Was he really referring to me? I had reported on murder and mayhem to the press several times. Yes, many of the stigmatized scenes are real, but they are only a small part of the picture.
Indeed, I was willing to call myself autistic long before I was willing to call myself schizophrenic. I had been in recovery for 15 years before I started to embrace the word “ugly” because the stereotypes were so threatening to me.
The Tough Decisions You Will Face
These stereotypes can really make you make tough decisions. Your relationship with your loved one, your perception of justice in social institutions, and your own stigma around mental health difficulties can all affect how you think about what you hear.
Even if your loved one is in an emergency and is struggling with conspiracy theories and opinions about you, remember that they know you well enough to know how you will react. They can sense your reaction and be bothered by it. Historical problems in the relationship can become exponentially worse. For a minority, there is real potential for violence when your loved one is in an emergency. How would you react if your loved one suddenly saw you as the root of all evil?
What will your friends say? How might they judge your parenting or partnership? How do you handle your need for privacy? How have you done this throughout their lives so far? Do your actions embarrass your loved one even more? How much do you trust your medical diagnosis? What have you heard about recovery? Does your loved one deserve the best treatment or should they be treated fairly like everyone else? What is the “best” treatment? What kind of money and resources do you have to play with? How willing are you to support someone who is not behaving “appropriately”? How much do you value their safety over your own?
Support for You
Healthcare providers will often refer you to the National Alliance on Mental Illness (NAMI) power structure for support, and you will connect with others who have faced these dilemmas for years. If you are willing to get involved, you can use these groups to make the most humane decisions.
Often, with this referral comes a clear understanding of the “chemical imbalance” that your loved one is suffering from. Suddenly, you are surrounded by volunteers who give their time and expect you to do the same and support their views. Acknowledging the power of the disease, setting behavioral limits, imposing medications, and accepting dilapidated housing options may be the standard you are encouraged to follow.
Indeed, people and families are as different as districts and NAMI boards. A variety of things can help.
How to Find Meaning in Stereotypes
When I experienced dehumanizing stereotypes, I felt like I was simply being victimized. I always thought I was criticizing dehumanizing practices, but I was still shocked! Oh, how awful, maddening, and dehumanizing treatment seems when you are in an emergency. No one believed what I said. I never thought I would be happy to put up with it. I saw no value in losing all my social standing and being locked up in squalid conditions. I feared for my future.
Now, 18 years later, two years after being discharged to the streets, I use all those humiliating experiences to convince the patients I work with that I know what they are talking about. I still feel overwhelmed when I think about what I went through, but I can now say that I went through it for a reason.
I often say that if I had known that my suffering could lead to meaningful work, it wouldn’t have been so scary. Instead of waking up with night terrors or peeing my bed, I could have lived through it more gracefully. And it wouldn’t have been so difficult for the low-wage work community that surrounded me to handle. So any innocent child who saw me would have run the other way. My negative energy was quite repulsive.
You Might Be Needed to Make It Possible
In the meantime, my father had made his point clear, thinking that prison and mental health storage would be the best thing that could happen to me. Like the treatment system at the Montana State Hospital that was set up to help me adjust to poverty and powerlessness, he seemed to want his negative prediction to be true. Still, he gave me a year of financial support to help me recover. I could have gotten food stamps, but my parents helped! And I still call them weekly. The memory of them being so anxious to support me while I cycled 20 miles a day to work 40 hours a week still hurts.
Thank God it worked! I was able to get back to my career.
Can you imagine how great I felt with a career in mental health, a wife, a dog, and a home?
Others Can Do This Too
So many others who are struggling can achieve so much healing and social empowerment by helping each other. We can do this by using our experiences to reach others who may seem unreachable to outsiders. But we also need to earn a living to make a living.
Not only have I been blessed with the opportunity to make sense of my pain, I have seen others do it too. I have helped recruit a team of four people to use their experiences with psychosis to help others. They have reached out and learned to lead groups in agencies.
What’s Missing for Schizophrenics in America?
Perhaps not everyone who struggles with the experiences associated with schizophrenia naturally chooses to become a therapist like I did, but the mental health system really lacks a vision for the sustainable roles that we schizophrenics can play. And I believe the first step toward creating such roles is to see schizophrenia as a culture rather than an illness.
In other countries, the voice-hearing movement has taken hold, healing many people and providing valuable roles for people. The premise is simple: Get voice-hearing people from different walks of life to come together and share their experiences in unmonitored support groups. Boy, can that be a lot!
I’ve been leading these support groups for the past 18 years as a professional who openly reflects on my own experiences with schizophrenia. Like many voice-hearing groups, the focus of my groups goes beyond just hearing voices. I like to include and normalize any experience that leads people to alternative ways of thinking about the way the world works.
I think that support groups like this help to make schizophrenics care about their siblings’ experiences. Mutual learning and coping strategies emerge. So allowing schizophrenics to acculturate and be schizophrenic is a great step in the right direction.
The Need for a Living Wage
But I think support groups are just the beginning of what is needed to give culture a meaningful role. In Oakland, California, outreach services to homeless camps, boarding houses, agencies, and shelters can invite institutionalized individuals into support groups. Many of the people I serve on the streets of Oakland can benefit greatly from visitors who come to their boarding houses and support houses and bring them to support groups. They can then learn to join groups in the community and overcome some of the barriers that isolate them.
Such an organization can provide significant training and employment for schizophrenics to develop a variety of skills. It can give them a chance to make sense of the stereotypes they experience or fear, so an education/outreach program can help schizophrenics move into better and better jobs.
How Can You Help Your Loved One Achieve This Vision?
I think it’s important to end the medical perspective on schizophrenia. Updated research defines psychosis more along diagnostic lines as a syndrome or a neurodevelopmental disorder like autism or dyslexia. This really supports the work of the Hearing Voices Network, which claims that voices and other experiences are truly valuable and have real meaning that needs to be addressed for healing and survival.
Trust me, there may be complex underlying issues that need to be addressed.
So while you’re experiencing schizophrenic stereotypes through your loved one, remember that they can become your child’s mission in life. You can’t be responsible for all the evil in the system, but you can bring the updated research and success stories of the Hearing Voices Movement to your NAMI meetings. You can find ways to support employment for people with schizophrenia by empowering organizations like the ones I suggested above. I ran a program like this for a year and a half until temporary funding was available. I know it can be done.
Successful Schizophrenics
There are many things that can help schizophrenics find roles that utilize their passions and interests. As a culture, schizophrenics have historically been persecuted like deviants in Western society. However, if we explore many traditional societies, we will see that many of the skills labeled as illnesses are shamanic and spiritual. There are many wise traditions to explore when creating solutions.
I personally do not flush the psychiatric tradition down the toilet. I myself use medication and work with others who do. I admire and support those who do not. However, we must offer solutions that help heal the endemic abuses that occur within the medicalized system. One solution does not fit all.
Finally, I am not afraid to use a word other than schizophrenia. I call my groups and programs private messages.