Lived Experience Matters: Coming Out and Sharing

APR. 12, 2021

By Katherine Ponte, JD, MBA, CPRP

Our lived experience matters. The best decisions concerning our lives are informed by our own voices. And the mental health community is diverse, so there is value in all our individual experiences.

Sharing can help further awareness and understanding, foster empathy and compassion toward people with mental illness.

I came out about my lived experience primarily because it freed me of stigma’s grip. I did so, even though people who experience psychosis are sometimes the most stigmatized. I set aside my fears of stigma, which is the key reason people are reluctant to come out, and took a leap of faith. I appreciate that it’s not for everyone, but for me, it was critical to starting my recovery journey. I’ve never looked back.

I also quickly learned that sharing my story could help others see the possibility and benefits of sharing their stories.

 

Benefits of Coming Out

There are many benefits to coming out and sharing your experiences:

  1. Personal growth. It can be therapeutic and cathartic. It can help you reflect and gain insight from your experiences. You can learn from these challenges.
  2. Better care and support. When we share our experiences, we can also help our supporters be better supporters. And opening up to a potentially broader group of supporters may alleviate some of the pressure placed on your existing support network.
  3. Connection. It can allow you to connect with friends and family and other people you may have isolated from. Coming out can help you overcome loneliness and build your support network.
  4. Truth. It can allow you to be your genuine self instead of lying about how you’re feeling, your absences, your behavior, which may leave you feeling like you’ve deceived people. You can apologize for actions and behaviors that you might regret. You can relieve that guilt you might feel and obtain some feeling of closure.
  5. Self-esteem. Realizing the love and support you have can reduce the shame you may carry and boost your self-esteem. Many may admire the strength you’ve demonstrated to overcome your struggles. They may even validate your experiences.
  6. Empowerment. Never underestimate the power of your example to inspire and influence others, especially your peers. Your example may be a source of courage for your peers — the courage they need to overcome their challenges.

There may be many pleasant surprises for you, too. You may learn that not as many people as you think stigmatize people with mental illness. Many are empathetic, compassionate and understanding. Some care for friends or loved ones with mental illness. And some may even have mental illness themselves.

 

The Potential Negatives of Coming Out

You also have to be prepared for the worst case scenario, which may result in any of the following:

  1. Stigma. Stigma is common, even among friends and family. Prepare coping strategies to deal with ignorance, negativity and disapproval.
  2. Loss of friends and family. You may lose friends or become estranged from your family. Those who remain in your life may pity you.
  3. Insensitive friends. These “friends” may gossip about you and exclude you from social gatherings.
  4. Unhelpful and hurtful advice. Some may encourage you to discontinue treatment, including medication, express platitudes, such as “cheer up” and “be positive.” Others may insist that self-care can cure you.
  5. Workplace discrimination. In the workplace, people may view you as having diminished capacity. You may be passed over for promotions or worse, you may be fired. However, you may be entitled to reasonable workplace accommodations under the Americans with Disabilities Act.

The key takeaway is that you must be careful about your decision to come out. Never feel pressured as you are entitled to privacy, and the decision to come out is irreversible.

If you do plan to come out, you can minimize the possible adverse consequences through preparation. Carefully consider whom you will come out to and in what order. If you come out to close friends and family first, they may be able to support you if you decide to come out to others.

I was willing to come out despite possible adverse consequences, some of which I did experience, especially some lost friendships. I came to the point where I realized that caring too much about what other people thought of me, meant caring too little about me. I wish I had come out sooner.

I dreaded the thought of having all those one-on-one conversations, so I came out in a Facebook post and then in a video I made about my recovery journey. And have also shared since then in many blog posts. There’s little I have not disclosed.

I’ve learned a lot in my recovery journey, and if sharing means others can avoid my mistakes, reach recovery more easily and quickly than I did, it’s worth every negative consequence. I’ve received tremendous support from many for sharing my experiences, which has deeply moved and touched me.

 

Where to Share Your Story

There are many ways you can share your experiences publicly:

  1. Social media. You can join mental health-related Facebook, Instagram and Twitter accounts and contribute to discussions. Or you can share on your own social media accounts.
  2. Blogs. You can create a blog for free on Medium. Or you can contribute to established blogs, such as the NAMI blog, which I love to do.
  3. Academic journals. You can submit a first-person account to prestigious mental illness academic journals, such as Psychiatric Services or Schizophrenia Bulletin.
  4. YouTube channel. You can create a YouTube channel, make videos on your phone and post them to your channel. Video can sometimes be more intimate and personal than writing.
  5. Books. You can write a book. I self-published a book of short essays. You may embark on the ambitious project of writing a memoir. There are various book styles and formats to choose from.
  6. Arts. You can express your experiences and emotions in art. Photographs can be very normalizing. Poetry is another form of expression you can try. Interestingly, many well-known poets have/had bipolar.
  7. Public speaking. You can start by speaking in small forums to develop your confidence. Many mental health non-profits offer speaking opportunities, such as NAMI’s In Our Own Voice. Another is This is My Brave. Remember that you have something interesting to say and that others can learn from you.
  8. Advocacy. You can engage in public advocacy work. Well-known mental health advocates have participated in TED and TEDx talks.
  9. Academic research. Some research institutions, such as Yale’s Program for Recovery and Community Health, are committed to participatory research. It views the person who is taking part in the research as the expert on his/her experience. It invites the person’s perspective and input on the issue being studied.

Coming out and sharing my lived experience has been tremendously rewarding. It has been surprising to learn how many people really care about what I have to share. For a long time, I lamented that nobody other than my peers seemed to understand me. But how could they if I wasn’t sharing my experiences?

Understanding starts with us. We can’t let others tell our story, because all too often, they get it wrong. It’s our narrative that can lead to real change. Don’t let stigma silence your voice. We all need to hear it.

Author’s Note: Professor Davidson, I owe you a debt of gratitude for the tremendous support and encouragement you have provided me on my recovery journey. You’ve helped me believe that people really do care about our lived experience, that our voice matters and can make a difference, that we have the undeniable right to lead conversations on our lives. Your rigorous evidence-based academic work over a career spanning more than 30 years and more than 450 papers amplifies our voices, makes people listen and take action. Your steadfast heartfelt commitment to proving the possibilities of living with mental illness empowers so many and gives us much needed hope. I am truly honored and privileged to have your support.

 

Katherine Ponte, B.A., J.D., MBA, CPRP, is a mental health advocate, writer, entrepreneur and lawyer. She has been living with severe bipolar I disorder with psychosis and extended periods of suicidal depression for 20 years. She is now happily living in recovery. Katherine is the Founder of ForLikeMinds, an online mental illness peer support community. She is a Faculty Member of the Program for Recovery and Community Health, Department of Psychiatry, School of Medicine, Yale University. Katherine is also the Founder of BipolarThriving: Bipolar Recovery Coaching and the Creator of Psych Ward Greeting Cards, which visits and distributes greeting cards to patients in psychiatric units. She is a member of the Board of NAMI-New York City and Fountain House. Katherine is the author of ForLikeMinds: Mental Illness Recovery Insights and a monthly contributor to the NAMI Blog. A native of Toronto, Canada, Katherine calls New York City and the Catskills home. Her life’s mission is to share her hope and inspire others to believe that mental illness recovery is possible and help them reach it. In the three years since reaching recovery and starting to share her story publicly, her work has reached over one million people.

Submit to the NAMI Blog

We’re always accepting submissions to the NAMI Blog! We feature the latest research, stories of recovery, ways to end stigma and strategies for living well with mental illness. Most importantly: We feature your voices.

Check out our Submission Guidelines for more information.