Handling stigma has been an ongoing journey that I’ve fought many battles with for the past sixteen years while living with schizophrenia. There have been many phases I’ve been through, particular experiences of discrimination, bias, and prejudice, and there’s been a lot of personal growth. Stigma has affected my relationships with others, my world view, and my relationship to myself.
In the beginning the distress was amplified by the fear of having people learn about my condition due to the way I reacted to their stigma. I feared people would learn of the condition thus causing me to lose friends, be treated differently, and to be estranged and alienated within social settings which are all things that have happened to me. When some people hear about my condition, there are many times they don’t know how to react. There have been awkward pauses and silences, people don’t know how to talk to me, many people talk softly and kindly to me and they’re afraid, whereas other people make ridiculous assumptions about me as a person and or think I need their constant emotional support whereas I don’t. These are just several examples of stigma, whereas there are many others too.
Setting the stigma aside, dealing with a mental health condition is incredibly intense and challenging and it has tested me to my limits and for many years it tested my will to live. It’s painful, emotional, and confusing, but it’s been even more difficult when stigma has increased the level of isolation I’ve had in dealing with the condition. If you’re experiencing cancer or other life threatening ailments, everyone rallies around you to help you through it. However with having had schizophrenia, instead of seeking out help from others I was hiding what was ailing me which only amplified the pain and intensity of the experiences.
This is very commonplace for a number of people I have worked with as a peer specialist and it’s common knowledge in the mental health world that you can’t share your diagnosis with a good majority of people. Having had schizophrenia, I’ve noticed when I’ve mentioned the condition to people it’s felt alienating and isolating and the stigma has forced me to withhold my thoughts and emotions. In most of my friend groups there isn’t much space to talk about it, even with people who have known about the condition, and this amplifies the isolation which makes it that much more difficult to handle what’s happening.
Focusing more specifically on my role as a peer specialist, I have constantly dealt with stigmatic experiences since starting the work over four years ago. This amplified experience of stigma has had a major impact on the way I view myself as a person. For years I have felt inferior to others and I couldn’t see the value of the work I was doing or just my own value as a person. I felt like an imposter. This was in part due to other life experiences that made me feel this way but stigma contributed. There has been a constant cultural barrage conveying messages of inferiority, otherness, eccentricity, and other sentiments from the tv, movies, literature, from my life, from the workplace, and from the mass media. This consistently weighed me down and compressed my self-esteem and ability to see myself as an equal to others.
The effects of stigma were very painful for a number of years, and there were a number of reasons why. I think one of the primary issues was that I just didn’t know enough about stigma and how it was affecting me to have any level of efficacy to combat it. About two years ago I realized this and I started reading as many civil rights era books as I could to learn more about how people push back against bias, prejudice, and discrimination, and to transcend those lessons towards mental health stigma. This was incredibly helpful.
There were key concepts that were transferrable and it also helped me to start identifying the myriad ways in which I was being discriminated against which felt relieving. One of the most difficult parts of dealing with stigma has been knowing that someone is saying or doing something discriminatory, prejudice, and/or bias but not knowing how to react to it or what to say to it because I’m having difficulty identifying exactly what it is they are doing and saying that has otherness, inferiority, or other messages of inequality towards me. This process has given me more of a voice within these conversations.
Another major component to all the pain and suffering I’ve felt with stigma has been the hatred and the anger I had towards others for their discrimination, prejudice, and bias. I struggled with this for a number of years and it caused me a great deal of emotional and mental pain. I would think about it and it festered and really tore me apart internally. It was awful and incredibly exhausting. For a while I was working through the stigma and still struggling tremendously until reading “Strength to Love” by Dr. Martin Luther King, Jr. Thinking about the book gives me chills because it’s been one of the most powerful books I’ve ever read. He details the essence of the civil rights movement where he talks about one component of the resolution to racism is just for everyone to love each other and that the path to equality and love is through love, even when others are being hateful and discriminatory and saying and doing all the terrible things they had been.
It made me think about how important it was for me to let go of my hatred and to start seeing things much differently. The book gave me a paradigm for how to handle the stigma I was encountering and it gave me a pathway and an ethos for how to handle these types of sentiments. One question Martin Luther King asks throughout the book is “How do we find a way to not only forgive people but to love them when they oppress us?” This was the guidance I needed in my journey.
Letting go of my hatred and figuring out how to love people when they are stigmatic towards me has taken a lot of learning. Gaining perspective on people was the first element that has felt really helpful. And before I speak more on this, I still do feel certain levels of anger, frustration, and exhaustion, however, this process of learning to love and forgive has helped pacify my psyche to a level that’s bearable. Thinking about the origins of stigma and how prevalent stigma is within our society including within all the mass media and cultural channels where it exists, I realized that it’s engrained in global culture.
This simply means that being born into this world gives people high levels of exposure to discriminatory, prejudice, and bias information towards mental health conditions and that this can be very hard to even have awareness that these sentiments are being burrowed into your mind and heart. For me, this doesn’t give stigma righteousness, however, it allows me to forgive people for having it and it’s given me an understanding that people aren’t actively seeking out stigma. Just by existing within this world these messages are sent into your psyche in sometimes conscious but many times unconscious ways and unless you are aware of what’s happening it can be very hard to not ingest this information or to refute it and realize it doesn’t have truth.
On this thread, many people say and do things that are stigmatizing without having any awareness of what they’re doing because global culture still doesn’t have ways of delineating what is or isn’t stigmatic and there isn’t much of a societal conversation around this. There’s another element where it’s very easy to make mistakes with language because language can be so fluid and this can be challenging. Thinking about this, I realize that language is the first pathway to accessing the deeper rooted sentiments of stigma. Changing the language helps but it’s not everything. Some of the problematic core beliefs can still exist regardless of what someone’s words are within a moment. So language helps and language isn’t innocent, however these sentiments are deeply rooted in many people.
Thinking through some of these issues helps me to understand that people are not malicious and do not set out to be discriminatory, it just sometimes happens given the culture, mass media, and people they are exposed to. I also think more about the number of benevolent conversations and kind and loving things everyone in my life has said to me and I realize that people really do care for me. For a while, it’s been hard to be within dynamics where I know people genuinely care about me but they still have prejudice and bias towards me at the same time. While people are making stigmatizing remarks in kind and benevolent ways
It’s difficult parsing through whether I want to yell at the top of my lungs or just reply kindly to their sentiments. This dilemma has brought to voice an important dialectic for me which is that people can have stigma towards my condition and still love me for the person I am. Knowing this has pacified some of the negative emotions but it still puts me in a quandary. I know the only reason I’m not treated stigmatically any more than I am is because schizophrenia is an invisible condition. If everyone I talked to could see the condition and know the diagnosis, things would be much different. So it leaves me at a crossroads, where I know the people who know about the condition have stigma whereas those who don’t would many times have stigma but it doesn’t come out due to the invisibility of the condition.
I know I need people in my life and I need people to connect with, however, how do I feel about all these people and the way they treat me? How do I stand up for myself while not breaking ties with people who still genuinely care about me? How do I realize that having lived through schizophrenia for sixteen years and having a meaningful and productive life is a sign of strength and that it’s a testament to anyone’s character who does it and that it’s not a sign of weakness or inferiority by any means? How do I help people to realize the inferiority exists within the ownership of stigma and its not through having a mental health condition? These are questions that will continue to play out as I take steps forward in my life.
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