Stamping Out Stigma in Mental Health
I believe that patient stories are one of the most powerful ways to improve understanding around a disease or condition. They are real, they are often raw, and they resonate with people.
Today, people are connected like never before, and the virtual world provides a platform for people to share their experiences fighting illness. The rise of online health advocates, connecting with other patients, physicians and carers, provides people impacted by disease with additional support and solidarity, and helps educate those of us who may have little or no experience of the illness.
At Janssen, we recognize the profound impact that telling powerful patient stories online can have on disease management, particularly in areas like mental health, where shame and stigma remain rife in many places, including in Taiwan, a part of the region that I lead at the company.
One such person with a powerful story is Rachel Star, a 32-year-old American living with schizophrenia. Earlier this year, Rachel was the star of a local anti-stigma campaign to dispel myths and misconceptions around the disease in Taiwan.
Diagnosed in her early 20’s, Rachel struggled for many years with her condition and how people related and reacted to her.
She found solace online, where she confronted her diagnosis and the negative portrayals of people with schizophrenia, becoming a powerful e-health advocate and an influential YouTuber. Rachel has harnessed the power of social media to drive change by connecting health communities and educating the public on mental health.
In Taiwan, more than 118,000 people have a schizophrenia diagnosis and many more remain undiagnosed and untreated. It is difficult to find people to come forward and share their account of living each day with mental illness.
We first heard Rachel’s story at Janssen’s HealtheVoices conference, which unites online health advocates in a real-world setting. We knew instantly that her story would strike a chord in Taiwan.
We were immediately struck by her determination to help people living with schizophrenia by tackling stigma and challenging perceptions of the disease so, in partnership with the Taiwanese Society of Psychiatry (TSOP) and the Taiwan Alliance for the Mentally Ill (TAMI), we invited Rachel to visit Taiwan to share her story.
During her time in Taiwan, Rachel helped enhance journalists’ understanding of schizophrenia and evoked a deep sense of empathy. Her story generated widespread media coverage, and she inspired a diverse range of people she met, including school teachers, student nurses, psychiatrists and psychologists.
Online, Rachel engaged patients and caregivers, increasing visitors to TAMI’s Facebook page, by sharing inspiring videos and coping tips with people affected by the illness.
Rachel’s YouTube channel also received a new wave of views and comments as local media coverage in Asia elevated public awareness in the region around the condition.
We received complimentary feedback from physicians too, with the event being hailed as one of the most successful mental health awareness initiatives ever undertaken in Taiwan.
Rachel is one of the most inspirational people I have ever met. Her visit to Taiwan helped move the mental health conversation forward, cutting through the social barriers often associated with schizophrenia.
One visit alone is not enough to overcome long-held societal ideas but through regular action and engagement we can create genuine change. Rachel’s trip was a fantastic launchpad for our 2018 educational activities, which include patient education kits and awareness posters in clinics.
Through our collaborations with TSOP (Taiwanese Society of Psychiatry) and TAMI (Taiwan National Alliance for the Mentally Ill), we continue to support innovative efforts to serve and assist patients by shifting perceptions around schizophrenia, and mental health more broadly.
We are on the right path but we recognize we face a long journey. But however long it takes, we remain steadfast in our commitment to stamping out stigma associated with schizophrenia.