The Divisive Issue of Medicating Psychosis Among Those With Lived Experience
The issue of whether to take medication or not can be a difficult one. While medication may work well for some, it may do little for others. This syncs with the fact that experiences associated with psychosis are vast and varied. People who experience it are very diverse, and causation remains nebulous.
I believe that causation for each person is a constellation of a series of modalities. I have witnessed how comparing causation theories becomes the spice of life in a psychosis support group. I find support groups for people who experience what is labeled as psychosis to be full of cultural learning that can result in powerful growth and wisdom.
As someone who’s been in recovery for 15 years, I have also witnessed the issue of medication to be politically divisive amongst message receivers or people who experience psychosis. Personally, I am starting to see it more as an element of cultural diversity in which differences can make the support groups I run vibrant and spectacular.
I believe I have a moderate view on this topic, which means it can be hard not to feel under attack in differing circles. My hope in this article is to provide perspectives to help people make their own decision about medication and work together regardless of their views and life experience.
The Initial Influence of Provider-Folk
I believe that early on, provider-folk often present an overly biased view about the relevance of medication treatment. Those famous five words echo down the ward’s corridor and indelibly into the recipient’s life: “Did you take your medication?” Often on a ward, family members who support medication and throw their weight around to support the mission are viewed as good supporters whether the subject responds well to them or not.
I played the obedient client for seven years and took my medication without complaining about side effects. If things weren’t working, I never thought I was getting bad therapy or needed to learn better coping skills, I just thought I needed to change my medication.
The therapist I had and the social workers I worked around rarely reflected on their own behavior. Mostly, it seemed, just like it seemed in my family of origin, countertransference and elite defensiveness were the norm.
As I started my career working on a social work team throughout this experience, I can say that we weren’t trained to write reflective notes, we were trained to cover our ass. I mirrored this hard-headedness as a professional, feeling like I had to convey that I had my stuff together.
I now see this as the dominant normal culture oppressing people who are different without taking any responsibility for their role in the poor outcome. Medication compliance was expected and then blamed when there was lack of success. Then, there was that term “medication noncompliance” and all blame landed squarely on the client or minority culture. “I don’t think they’re taking their medication,” becomes the popular thing for the benevolent staff person to say.
For a long time I internalized this damaging mentality, feeling it was the bigger thing to do. I remained chronically depressed.
The Lack of Training
I believe the premiere reason for the medication bias in treatment is that providers rarely get trained on how to work well with individuals who experience psychosis. They are expected to use their education to figure it all on their own. And much of what they read is full of hopeless eugenic myths that are the result of institutional stigma.
People who have psychosis are most often believed to be dangerous, child-like or weak, according to stigma expert Patrick Corrigan. With these hopelessly negative projections cast upon them, message receivers or persons with psychosis are rarely seen as though they can become stronger and wiser from the hardships they are experiencing.
The Medication-Free Camp
I believe people who are against medication are right about a lot of things.
We really don’t understand the health problems that can arise from taking medications. From what I’ve seen, the FDA has historically been a poor judge of long-term health effects of the various chemical cocktails. The 25-year discrepancy in the life expectancy may in fact have something to do with medication.
Moreover, clearly medications can be used in such detrimental ways when they are forced or overused. People who are beat down by the streets and hospital’s revolving door may struggle for years until some learn to internalize eugenics. Perhaps their unspoken interpretations of their experiences are elaborate, torturous and reflect intricate elements of oppressive realities. Or perhaps they may just trust the money-making system in which they medicate their life and activities away in warehousing.
The pharmaceutical industry really does what it can to corrupt doctors and promote their product. The bias that pervades in psychiatric wards and treatment centers is one in which the majority reinforce ugly lies. There is a lot of bad things to gripe about when it comes to medication.
The Seeds of Division
Currently there is an anti-psychiatry backlash for a very good reason that I support.
However, recall that in my mind the use of medication reflects diversity issues.
What happens in my mind is that some people who have been able to thrive medication-free believe what works for them can work for everyone. This can make the issue divisive for some people. For example, I have found that people who have been institutionalized and who have lacked adequate housing in Oakland, California where I work can feel very separated from some peers who have triumphed and been able to survive medication-free. What can result is a sense of an underclass that is looked down upon.
I certainly went through a stage where I forgot that I have privileges that helped me survive that others might not have. I believed I could heal everybody. It’s arguable that this is a stage that some of us peer workers may go through. But, after making these mistakes, I believe becoming political about those feelings and fighting for them can divide and exclude.
What I have come to believe after leading thousands of groups that explore psychosis is that there is a higher amount of cultural diversity in the people who experience psychosis than some survivors like me tend to anticipate. I think it’s easy for the recovered person to forget or disregard the privileges they have that enabled them to recover. Privileges come in all forms and a person who has overcome psychosis has had to use many of them optimally to escape.
Still, on bad days I sense an ethos among some consumers and feel like I am looked down upon by others because I have not joined the upper echelons of wellness and gone off medications.
And yet, I am different from many who are successfully medication-free. I navigate with a unique set of circumstances. And so, I have grown to believe that it is a divisive presumption to believe that everyone is better off without medication.
There are a few presumptions that seem to go with automatic advocating for medication withdrawal that I want to challenge. The first is that if I could do it, then you could too. The second is that everyone can do it and it would be wrong to think otherwise.
Issues like relationship to the means of production, availability of a welfare state, family/cultural support, homelessness, race, gender, job history, sexual orientation, educational prestige level, learning disabilities and incarceration histories are examples of factors that individuals navigate. These impact an individuals’ decision to take medication and may challenge the above presumptions, at least for some of us.
Supporting Those in Repressive Settings
Another thing I know well is that psychosis and the mental health system can put people in some bad incarcerated, warehouse circumstances. When I was in a bad situation, I thought it couldn’t possibly have been any worse. But since I have recovered, I have learned that I had oh so many privileges that other people don’t often get. And I think this may be true for some others who are successful.
If a person lives in the most repressive of conditions, I believe they may need medication to survive it. It might be naïve to think that anyone can go off their medications at any time. It takes tremendous subservience to survive some conglomerations of oppression. For example, one could say that people shouldn’t have to live that way, but so many do have to live that way. Some people have struggled for decades and still want to improve their lives.
In many cases, a true supporter needs to appreciate the nature of the repressive circumstance first. Then, they may even need to appreciate the time it takes to transition to better situations before they make a three-minute assessment and lean on someone to go medication-free.
In fact, why lean on anybody ever? People have a right to honor their experiences in any way they chose. The healthy thing to do in most contexts is to respect each other’s differences and work together.
The Reality of Counterintelligence Efforts to Divide Us
While we may get that sense of togetherness when we are at conferences, when we survive and start working, real counter-intelligence efforts, egos, slights and slanders may turn us against each other. I believe this can function to maintain the repression of our brethren.
It is not hard to see the way mental health recovery fails to trickle down when mental health organizations and powerhouses battle with each other politically. Yes, I think this is part of the master plan the government has that minimizes the power of rebellion in the United Sates where series of clandestine Libertarian and social Darwinist economists use their secret
societies to currently rule over democracy. Yes, I think the mainstream view of mental illness has a lot of money and power behind it. Yes, I can function and I still believe real, undemocratic counterintelligence is a factor!
When we allow it to make us attack people with alternative beliefs and experiences, we divide the culture.
Striving to Be Better Than Some Provider-Folk
I believe that when we throw our opinion around without careful assessment, we run the risk of being just like the unhelpful amongst the provider-folk. When we work in the system, we are going to do harm for a portion of the people we serve if we mindlessly promote only what has worked for us. We need to be mindful that not everyone is going to be happy with us. We need to reflect, explore, be vulnerable and work with those who are hurt by us. There may be an incredible story there.
Peer counselor survivors who understand psychosis are needed on service teams as specialists.
As survivors we must agree to disagree and be culturally competent for each other so as not to just become part of the machine. If we are not careful, counterintelligence agents or messages well may have us divided over issues of medication and other cultural factors fighting one another from other regions just like they have with other social movements.
If we do not cross diversity divides and let our egos rear their ugly heads, we risk becoming part of the problem.
We don’t need a stratified system with subsectors that don’t deal with each other. That is what we have now. We need emotional regulation and an openness to working together and manners that exceed those of the provider-folk to prevent division. Without our voice, the oppressed may remain oppressed.
I hope in my journey to be able to go medication-free sometime when I retire. I am glad to hear that some people can do it and maintain strong recoveries. I have no problems if they promote medication-free alternatives, make films and write websites and books to give me information. In fact, I am grateful for that.
I work in a stratified system and take money from my brothers and sisters to pay a mortgage. I believe my brothers and sisters could do so much better if I shared with them rather than provide them with nickel and dime advice amidst their repressive warehousing. Still, many people I work with recover and lead dignified lives. If democracy comes back to our country, and the rich get taxed at the level that the poor do, we have some mechanisms in place to really tug on and make changes.
I think it is the “craziness” of the disparity in the hacienda of the mental health industry that I depend on to survive that keeps me on medication. Unfortunately, using medication made a major difference for me. I tried for two years to manage without medication. I couldn’t get out of the homelessness and underemployment that kept me down. I wanted to use my strengths towards something that could provide me a better life. The depravation and abuse were hard. I never worked so hard and thanklessly.
Finally, I returned to the field of mental health to survive and try to use my experiences to make it better. Many could argue righteously that that makes me part of the problem.
I know we could do better for each other someday. But I believe working together and transforming the system is possible even if we don’t have what European countries have. Every day, I see it happen in group therapy for psychosis.
Photo by Ionut Vlad on Unsplash