Advocating involves speaking up. There are many ways to advocate for change. I really enjoy the visual model of the social change wheel as it illustrates that there are multiple ways to work towards social change.
Systems advocacy is focused on change of systems. This includes areas such as collecting and using data to influence research, funding, and advocacy that helps serve to be a collective voice, especially for those who are most vulnerable.
These interventions are great for exploring and processing through substance use. Using a metaphor for Stages of Change helps the client conceptualize where they are at in their recovery process, and it helps build trust between the therapist and the client. Using a timeline activity helps the client gain insight into patterns throughout their life so that they can better anticipate triggers and potential needs.
Stigma is a shield created by society, made up of misunderstanding and fear of mental illness. When we look away from someone behaving erratically or “strangely” on the street, that’s the fear society ingrains in us. Perhaps we’re scared to consider the possibility that the same could happen to us; that we might be shunned by society, too.
The shield of stigma also stops us from seeking help for our own mental health. When faced with a stressful life event or emotional challenges, we might carry the hurt or confusion inside. Perhaps we avoid facing a potential diagnosis, so our illness only grows worse. Stigma facilitates mental illness turning into the “monster” it doesn’t have to be.
Social perceptions need to change. However, stigma is so deeply rooted in societal norms that it can take a long time to eradicate. And people like me, people living with mental illness, can’t wait on society to change. We need to live now. In fact, we need to be pioneers.
First, we need to overcome our own belief in society’s fears. This requires finding hope, and specifically recognizing the possibility of recovery. Recovery from mental illness is living a full and productive life with mental illness. With this mindset, we can take ownership of our condition and live a fulfilling life. This can be one of the most powerful forces for change.
Stories of living fully with mental illness can help reshape society’s bias. They also provide inspiration and guidance for other people living with mental illness. This is the power of peer support and sharing lived experience. It creates a cycle of more people finding recovery, and then in turn, society seeing more positive examples of people living well with mental illness. Society needs to see what life with mental illness can and should be—a life of possibility, not a life sentence.
When people share their mental health journeys, it also helps set our own expectations. Recovery is hard and there is no smooth path to get there. It’s also not a cure, it requires continuous patience, discipline and determination. There will be stumbles and uncertainties along the way. This is the reality of mental illness. That’s why relatable, real-life examples are so valuable.
Knowing that others are going through similar challenges can help us build resilience. The result is self-empowerment by the example of others. We, the mental health community, rely less on the image society projects upon us, and instead focus on the image reflected to us by our peers. This is the power from within ourselves and our community.
I believe that this type of person-driven recovery has been overlooked as a way to combat social stigma. It’s become so ingrained that not even people with mental illness think recovery is possible. Too many of us allow society’s fears to become our own. Together, we can reverse the vicious cycle of stigma and instead, power the virtuous cycle of hope and recovery.
Katherine Ponte is a Mental Health Advocate and Entrepreneur. She is the founder of ForLikeMinds, the first online peer-based support community dedicated to people living with or supporting someone with mental illness and is in recovery from Bipolar I Disorder. She is on the NAMI New York City Board of Directors.
https://www.nami.org/Blogs/NAMI-Blog/October-2018/The-Power-to-Create-Change-Comes-from-Within
I was 21 years old and living in France. I had just graduated from college and was living near Paris when the symptoms began. I didn’t understand what was happening to me. I had never heard of mental illness; I did not think mental health existed. All I knew was that I couldn’t control what I was feeling.
I couldn’t sleep; yet, I also couldn’t get out of bed. I just wanted to stay in the dark with the covers pulled over my head. I became highly sensitive to light and sound. I thought people who approached me were going to strike me, because I was bad and deserved to be hit. Nothing made sense.
I felt as though I was wearing a lead cloak. The weight of it was crushing, as was the sense of guilt and shame I felt for a failed relationship. Waves of panic would wash over me. I was positive I was being persecuted. This person from my past was going to find me and kill me—I was sure of it. Sometimes I felt as though I was floating above myself, watching myself. I would later learn that this was a severe sign of mental illness called dissociation.
I came back to the U.S. for urgent medical treatment. I was diagnosed with major depression and schizoaffective disorder, a condition characterized by a disconnect from reality which accounted for the paranoid delusions.
The diagnosis of depression caught me by surprise. I never saw it coming because I was completely ignorant about mental illness, as was everyone else in my life. Sure, I had been sad for a long time. I had immigrated to the U.S. at the age of 13. I did not adjust well as I just didn’t know how to make new friends. So I kept to myself, with my nose in the books.
I thought I would go through my entire life like that, feeling lonely and disconnected. For me, this was normal. It never occurred to me to ask for help because I didn’t think I had a problem. I just bottled up my emotions. But after eight years, it all came out in a dramatic implosion while I was in France.
My psychiatrist put me on an antipsychotic and an antidepressant, which worked to relieve my physical symptoms. But the emotional wounds took years to heal.
I went to therapy twice a week. I had a lot to say to my therapist and psychiatrist—things I never thought I could tell anyone else, because I didn’t think there was anyone I could count on. I trusted no one even though I had a support system and a caring family. I didn’t notice my support system, which is a big distinction. I still felt all alone.
Therapy saved my life. My therapist told me that many of the belief systems I had grown up with and internalized were not correct and were, in fact, hurting me. I had to be willing to accept that I may be wrong. I had to change.
For therapy to work, you have to be open to change. You have to accept that your way of thinking may be wrong and that your beliefs may be what is making you sick. You have to change your ways to make healthier choices if you are going to get better. I am proud to say that I changed.
In addition to therapy, I also needed (and still need) to take medication every day (and for the rest of my life). I will always have a chemical imbalance in my brain, and I am grateful for the medicines that exist to correct it. At first, I struggled with this dependency. I didn’t want to be dependent on medications. I didn’t want to depend on anything. But my blind psychologist taught me about dependency.
“Listen,” she told me. “There is nothing wrong with dependency. I cannot even pick out my own clothes or drive myself to work.” She had an assistant who did that. “I have this dog to lead my around.” She had a Seeing Eye Dog.
“I must depend on this dog and my driver to get me to work. Without them, I wouldn’t be able to do much. I depend on them and that is not a bad thing.” I started to see how by accepting her dependencies, my doctor was able to not only work, but be a very effective therapist. And her acceptance of her dependencies helped me accept mine.
I never again want to feel the way I felt in the throes of my depression, so I take my medication religiously and attend to my emotional health diligently. I do the work to take care of myself. But I don’t otherwise think about my mental illness, or, until recently, talk about it.
Even though I have been living with my mental health condition for 20 years, I only recently learned about NAMI and their resources when doing some online research. I signed on to be trained for their presentation programs and have become a speaker in the NAMI Ending the Silence and NAMI In Our Own Voice educational programs.
The more I talk about my mental health conditions, the less I fear other people’s judgement and the more I realize the power my example may offer to others. I feel I am making a meaningful impact. The more visible examples of people living well with mental health conditions, the less the associated stigma will be and the more people will be willing to get help early.
I don’t know if I am unique, but I don’t feel limited in any way by my mental health condition. I lead a full life. So, I have moved on to the next phase of my recovery: advocacy. I’d like to be an example of how a diagnosis of mental illness does not have to be devastating. It can be a turning point to a better, self-examined life.
After recovering from a major mental breakdown at the age of 21, Melisma Cox earned two master’s degrees and served as a Fulbright Scholar.
