Amanda is a project assistant at the Transitions Research and Training Center (RTC) at UMass Medical School in Worcester, Massachusetts. Her many responsibilities include interviewing young adults involved in the research studies, creating young-adult friendly products, and co-running Voices4Hope (www.voices4hope.net), a resource website created by young adults for young adults. Amanda was 20 when she was diagnosed with bipolar disorder. Here she shares her perspective on how young adults can help make anti-stigma services and programs more effective.
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What inspired you to advocate for anti-stigma programs and services for youth?
As a young adult diagnosed with bipolar disorder, I have seen firsthand how much harm stigma can have on the self-esteem and general well-being of young adults. Stigma can lead to bullying, job discrimination, relapse in recovery, stress, etc.
When I was first diagnosed with bipolar disorder, I was scared to tell my friends—and embarrassed to get treatment—because of the stigma attached to mental illness. When I finally worked up enough courage to seek out treatment and support services through my school, I hit a brick wall. Nobody could point me in the direction of supportive young adult mental health/anti-stigma programs, and the school itself had no idea what to offer me to help me continue as a successful student. I was told to go to [the] disability office on campus, a young adult “disability-friendly service” that could give me supports to help me when I was struggling in class due to the symptoms of my mental illness. However, when I got there and identified that my “disability” was bipolar disorder, they really had no idea how to help me. This was a place where I was told I would feel comfortable and supported, and I walked away feeling more discouraged than ever. I ended up feeling so lost and alone, and had no supports, ultimately leading to taking time off to search out, and ultimately help shape young adult services that I so desperately needed.
Also being a member of the LGBTQ* community, I’ve seen how stigma can not only affect young adults in regards to mental health, but also in regards to gender identity/sexuality. Stigma has led to the rights of those in the gay community to be questioned, and has led to bullying and suicide of many LGBTQ youth, including young adults I have known and cared about. My own well-being and mental health, as well as [that of] the loved ones around me have, on multiple occasions, been dictated by stigma.
Having now been educated about, and given the opportunity to be involved in, mental health and LGBTQ advocacy, I’ve learned to feel comfortable with who I am, and to speak up not only for myself, but for others. I am inspired to advocate for anti-stigma programs and services for the other young adults out there who are being held back from their true potential and from the opportunity to express their true selves due to stigma. If these anti-stigma programs and services [had been] available to me back when I was first diagnosed, I don’t think I would have had such a rough time at school, and wouldn’t have had to take time off from my education in order to find supports that could help me educate myself and the others around me about mental health and recovery.
* Lesbian, Gay, Bisexual, Transgender, and Questioning
What should others developing anti-stigma programs and services for youth know in order to be more effective?
People developing anti-stigma programs need to know that the young adult voice is important and valuable. We are the voice of the future, and that voice needs to be heard and taken seriously. In order for that to happen, programs need to create a safe space that makes us feel comfortable enough to share our opinions and ideas, and feel like we are truly helping to better services. When I joined a gay-straight alliance in college, I saw firsthand how effective a safe space could be in facilitating the ideas of young adults and putting them into action. As a young-adult run organization that was fully supported by our school, we stepped up and created very successful events such as anti-hate week, a drag show fundraiser for a local LGBTQ health center, a coming-out day dance party, etc. These events not only supported young adult LGBTQ students, but also educated other students and faculty about the issues LGBTQ students face on and off campus, and how they could help.
Young adults also want to have people working for these services and programs that are peers. These organizations need to be culturally competent, and have representation on their staff that matches the great diversity of the young adults that are a part of these programs. Working with other young adults with mental health conditions has made me feel comfortable being open about my own diagnosis, and asking for the supports I need when I’m not feeling 100%, instead of hiding who I am and what is going on in my life because the people around me might not understand.
Young adults need to know that we aren’t alone, and you need to show us that by sharing as much as you expect us to share, and supporting us on a personal level. If you want someone to fight stigma, you need to provide an organization in which they feel comfortable sharing their own personal experiences with stigma, which is a sensitive and scary topic for most. Helping to fight stigma takes strength and courage, and hearing the stories of others our age and how they advocated against stigma can also help us get the momentum we need to step up and speak out!
What advice do you have for youth who would like to work with adults in developing anti-stigma programs?
The best advice I could give is to bring your true self to the table, and remember that you are the change makers! Being your true self means sticking to what you believe in, and knowing that your opinions and experiences are important, and deserve to be heard. Adults may seem wary to work with young adults at first, so it is our job to prove ourselves and use our strengths to take charge and make change. Use resources around you, such as the Internet, and programs you may be linked up to, in order to locate organizations and events that can help you become involved with anti-stigma programs. Your school may also have a lot of resources to find programs that are seeking young adult input on programs.
Also, don’t be afraid to share and be proud of your differences! Stigma has been formed by a fear of differences and a lack of knowledge, so the first step to showing that you can positively help a program on anti-stigma is to share how you have stepped up against stigma. Although it can be scary at first, I’ve found that telling my story and sharing my experiences with adult providers/staff/family members, etc. has always had a positive response, and has helped adults recognize that I, as well as many other young adults, have a unique story and ideas due to our personal experiences that could help make positive changes to their organizations. Educate people on your unique self, and the positives that come along with those differences.
You can also form councils in your area that are focused on anti-stigma activities, and join with other youth. We have many youth councils in Massachusetts for young adults with mental health conditions, and our groups are often asked to give feedback to organizations and programs on their events or policies because they’ve seen that our opinions as a young adult council have had a positive effect on other organizations. The more voices joined together, the louder the message comes across!