Personally Speaking: Speak up!
How to share your SMI story and be the change you want to see in the world
By Eric Smith
I was diagnosed with bipolar disorder in my teens and schizoaffective disorder when I was hospitalized as a psychiatric inpatient in my mid-20s. For more than a decade since then, I have shared my journey through severe mental illness (SMI) as a means to shape SMI policy and practice across the United States.
I have told my story at local, state, national, and international conferences, in the pages of books and in documentary film. I have spoken at Stanford University, testified before lawmakers in five states and been a guest on national radio programs and podcasts.
Over the years, I have sought to use my story as a vehicle to spur change, and I believe anyone else can do the same. Sharing your story of overcoming adversity has the potential to move others and provoke the changes you want to see in society.
Only one person exists who can best tell your story: you. I know it can be difficult to figure out how to start. So, here are five top tips from someone who’s been there:
1. Are you ready?
Before you begin to share your personal mental health journey, consider whether you are in the right headspace. When I was discharged from an inpatient psychiatric hospital, I was in a fragile state of being, and it would not have been good for my health to publicly tell my story at that time.
If you are experiencing fresh traumas and learning to adjust to new normals, give yourself some time to process your thoughts and emotions. If you experience heightened levels of anxiety, depression, or other unwanted feelings when creating or telling your story, consider seeking guidance from a treatment provider to learn coping skills and strategies for processing emotions tied to your journey. Doing this can help you share your story without resulting in harm to your wellbeing.
To this day, I often cry when speaking publicly about my journey through SMI, but doing so doesn’t send me into fits of mania or depression and no harm is done. If telling your story is not detrimental to your happiness and wellbeing, then you are ready to start constructing your story.
2. How to tell your story
There is not only one way to construct your personal story, but there are some organizing principles to keep in mind. The first question I ask myself before writing a speech or preparing to speak publicly is: “What is the goal?” If you can identify what you are trying to accomplish, you can use that as a way of organizing everything you want to say. Every word that does not bring you closer to accomplishing your goal carries you farther away. Edit accordingly!
Two speakers who do this really well are Bethany Yeiser and Ellen Forney. Check out Yeiser’s TEDx Talk on surviving schizophrenia and homelessness and Forney’s TEDx Talk on living with bipolar disorder for helpful examples.
When you are advocating for something, don’t forget to include a call-to-action at the end of your story, whether it is an interview, public testimony, podcast, speech, essay, or op-ed. After telling your audience about you and what adversity you have overcome, tell them what they can do to support your cause.
3. What to include, and what to leave out
For a long time when I first started telling my story at conferences and while preparing to offer testimony, I struggled with what to include and what to leave out. A simple trick to help you determine whether you should include certain details or leave them out is to ask yourself: “Is this necessary?” If you can make the points you wish to make without including certain details, leave them out. If you cannot do so, keep them in.
Strike any sentence that makes it sound like you are seeking pity. Moving, impactful storytelling does not require you to feel self-pity or seek pity from others. It only requires sharing your experiences in an honest, authentic way that forms a bond between you and your audience.
4. Self-care is not an option. It’s a necessity.
Telling and retelling your story can be physically and emotionally taxing. Sharing your mental health journey is important, but not if the cost is pushing yourself over the edge. That’s why practicing self-care is essential. Here are some practices that I recommend:
For starters, when you are developing/writing your story, be kind to yourself by setting a timer for every 20 minutes to take a break and move around. If you feel bombarded with undesirable feelings or thoughts at any point, stop what you are doing and take slow deep breaths, turn on some of your favorite music, read something that gives you pleasure, or do something else to reorient you to a pleasant here and now.
I admit that I have cried while speaking in front of a large audience on many occasions, and taking brief pauses with slow deep breaths is how I get through my presentation when that happens.
The goal here is not to prevent crying (you are a human being, not a robot!), and shedding tears is often part of the territory when discussing emotional topics. The goal is to contain enough of the emotion that people can hear what you have to say through the tears, because it can be difficult to understand what anyone is saying when they are crying.
Finally, practice telling your story, and then keep practicing it. You will start to get a feel for more concise and more effective ways to tell it, and that can help you build confidence in your speaking abilities.
5. Where can I share my story?
There are many ways to start telling your story to create change. Begin by sharing your story with people you trust, such as family and friends. This can help reduce anxiety about speaking publicly when sharing your journey with others.
Once you’ve incorporated feedback from a friendly audience and have gained some confidence, consider sharing your story with trusted organizations. If you believe your story can add value to an organization’s mission and purpose, share it with them and ask if there is an opportunity to share it with their audience. Two organizations I recommend are the National Alliance on Mental Illness (NAMI) and Treatment Advocacy Center.
NAMI has local chapters in many cities across the United States. Locate the one nearest you, and you can call or email them to share your story. I recommend calling and emailing both the local and state-level chapters in your area. Let them know you are interested in creating change by sharing your story, and ask them how you can help.
Additionally, the Treatment Advocacy Center publishes Personally Speaking, a series of personal essays about living with SMI that I have twice contributed to, and they can work with you to help develop and organize your story.
Another option is calling and emailing your elected representatives, because part of their job is to listen to the people they represent, and that includes you! After speaking with your representative(s), you may be invited to testify in a hearing on the need for legislation related to your mental illness.
The idea of testifying can seem scary or intimidating, but what it all boils down to is simply speaking your mind and perhaps changing others’ minds by doing so. What’s really frightening is people with lived experience not speaking up and testifying, because policy and law then doesn’t consider the perspective of those who are directly affected by it. Legislative progress is driven by what those who choose to testify have to say, so speak up!
Don’t be discouraged if you don’t immediately get a lot of interest from others as you begin to share your story. Success with anything, including writing and public speaking, takes time and dedication. With time and effort, you and your story can be a vehicle for change.
Eric Smith is a consultant, mental health advocate and public speaker.
