Washington, DC - In a previous professional incarnation as a health fellow in the office of U.S. Sen. Chris Murphy, D-Conn., I had the honor of “staffing” — as they say on the Hill — Loretta Jay, co-founder of B Stigma-Free when she visited the Senator’s office to share her work addressing stigma in mental health. I recall being inspired by Jay’s leadership at B Stigma-Free and her mission of “reducing stigma, bias and prejudice…and fostering understanding and respect of people perceived as having a difference.” B Stigma-Free accomplished this goal by helping existing networks share and spread similar messages to create synergies between organizations.
Adults with lived experience shared their stories about being stigmatized at the “Tackling Stigma as a Route to Mental Health Inclusion” track of the 2018 International Initiative for Mental Health Leadership (IIMHL) in Stockholm — now nearly four years after learning about B Stigma-Free. Hearing their narratives reminded me how much remains to be done to overcome the stigma associated with mental illness and that stigma is very much an international issue. The four individuals who shared their journeys at IIMHL all hail from different countries that are recognized as relatively advanced in terms of healthcare: Denmark, England, Sweden and Scotland. Similar to the United States, however, family, community figures and health professionals questioned the veracity of their mental health concerns. Doubts from loved ones and experts resulted in feelings of shame and embarrassment around mental health diagnoses and, to this day, an under-estimation of their skills and abilities. Each of the champions and ambassadors whose stories follow overcame — and continue to overcome — the barriers that systems have laid out in front of them. These are synopses of their experiences which are inspirational and serve as a call to internationally-minded psychologists to learn from one another and lead together for change regarding the stigmatization of mental illness.
Des MacMillan, Scotland: In Scotland, “See Me” staff and volunteer advocates — whose official titles are “champions” — work to end mental health discrimination. Des MacMillan, a fisherman from the western coast of the country, invoked Braveheart as a symbol of strength in the face of the challenges when he spoke of his struggles with mental illness beginning at 8 years of age when his grandfather and, of all practical purposes only father figure, passed away and he was told to “manage his emotions.” Years later, MacMillan struggled with depression and, ultimately, attempted suicide. Now, he is working toward recovery and trying to be the best father, husband and professional he can be as he addresses his mental health and supports others who may be struggling, as well. MacMillan, and his colleagues at “See Me” highlight the importance of being courageous in order to have the heart to face fears, embrace strengths, build resilience and recognize our potential. One example? MacMillan recently led an anti-stigma event in Scotland attended by over 240 people.
Johanna Hennberg and Rahebe Rezai Nejad, Sweden: Johanna Hennberg, a youth ambassador for (H)Järnkoll, spoke of her experience on behalf of the Swedish anti-stigma organization with which she works as a peer counselor. She shared how privileged she feels to be able to understand others in a very unique way because of her journey as a woman diagnosed with multiple psychiatric conditions, including ADHD, OCD, GAD and Asperger’s. Hennberg eloquently stated that her experience as a person who lives with a mental illness should be valued at the same level as “high academic knowledge” because it is as important to social change and awareness as scientific research. Her Iranian-Swedish colleague, Rahebe Rezai Nejad, also a (H)Jarnknoll peer counselor, talked about receiving a diagnosis of PTSD years after losing both of her parents in an earthquake in Iran. Nejad highlighted the challenges of navigating systems that are laden with layers of stigma — from mental health broadly to perceptions of immigrants and ethnic minority women who present with mental illness. In her words, “The revolution to fight stigma began with me” when she decided to address her own “self-stigma” and signed on to speak out as an ambassador for (H)Jãrnkoll.
Stefan Tofte, Denmark: The Danish ambassador from the anti-stigma organization “One of Us,” Stefan Tofte, explained that he spent years suffering from hallucinations that adults brushed off as inconsequential. That is, until he blacked out as an undergraduate student as a result of the stress of his situation. Although Tofte possesses a master’s degree, he has spent two years seeking employment with no success. He attributes sending over 300 CVs without receiving a job offer to clearly stating in his applications that he is a person who lives with mental illness. Tofte shared how much being involved in anti-stigma efforts reminds him to be kind to himself and to address his own biases about who he is and what he is capable of given his diagnosis of Schizophrenia. Tofte explained that he worries he may struggle with “eternal stigma” toward himself because of the messages he receives from broader society and how bias against individuals with psychiatric diagnoses permeates his own thinking about his abilities. His perceptions are echoed in a survey from Denmark reported by Johanna Bratbo, “One of Us” project manager. Data from the Danish stigma project indicated that 30 percent of persons diagnosed with mental illness report “a high degree” of self-stigma.
Luke Watkin, England: Luke Watkin, a “Time to Change
” (TTC) young champion from England helps youth between the ages of 11 and 18 understand mental illness since his youth. When Watkin first reached out for help at 12 years old because he was hearing voices, he was told, in effect, to “be strong like the men in the family and solider on…” Watkin became aware of TTC after receiving a diagnosis of schizoaffective mood disorder and soon attended their peer courses. Seeing 80 other young people in a room who also wanted to challenge mental health stigma was “motivating and encouraging.” Watkin learned to tell his story to others and now, as a champion, talks to many groups. As Watkin explains, “TTC gave me a voice against stigma and I won’t give that up.”
Overcoming stigma associated with mental illness is a challenge for all of us, no matter where we are from. Young leaders from Scotland, Sweden, Denmark and England remind us the importance not only of good mental health systems of care, but of the importance of promoting broad understanding of the range of human experience. In particular, we must all — as global citizens — support the evolution of a stigma-free world. Let’s give voice to our champions with lived experience. The revolution includes all of us, but should begin with them.