I have been open about my bipolar disorder for almost twenty years. Immediately after I spoke at my first mental health awareness event, I was met with feedback and gratitude. People thought it was a brave thing for me to speak up about my mental illness to fight stigma. But the truth is, I felt I had to reveal my mental health problems because I was scared of being stigmatized. When I had my first manic episode, I was at college and Facebook had just come out. I was nervous that people were going to gossip about me, and I would never know who knew what about my mental health history, so I felt I had to take control of my own story to stop my anxiety. I wanted people to know that they did not have leverage over me. Because I was telling people myself, anyone who knew about my condition would know it was not a secret skeleton in my closet.
After close to two decades of being public with my illness, I still am not always sure when stigma, microaggressions, and discrimination are impacting my life. These things are difficult for anyone to notice because our society is often not as sensitive to prejudices and discrimination about mental illness as it is to prejudices regarding other conditions and diversity groups – and because, like most biases, mental illness stigma is often hidden, unintentional, and systemic.
Through my work with the Mental Health Safe Project, I have developed tools to help people navigate the confusion of the stigma experience. Recently, we have created the “Stigma Can Look Like” campaign to educate others about how mental illness stigma can manifest in everyday life and to help people become aware when they believe they are experiencing stigma and connect them to options to respond.
We have shared an image from the campaign at the top of this article. You can also visit mhsafe.org/options to learn more.
Five Steps for Responding to Stigma (The 5 C’s)
In this article, I will share a 5-step framework (the 5 C’s) for deciding how to respond when you believe mental illness stigma may occur. Then I am going to share examples of ways you might respond protectively (meaning you focus on self-care and may choose not to do anything), collaboratively (meaning you work to connect with the other person to have a learning experience), and assertively (meaning you take action to assert your rights more unilaterally because the other person is not collaborating).
Whenever something stigmatizing happens, we can Clarify what happened in case it was a potential misunderstanding, Cope with how we feel from the trauma, Collect evidence so we have a possible way to prove there is a problem, Cultivate personal and professional support options, and Consider the next step of whether we want to act.
Below is a guide summarizing some questions you can ask yourself at each stage (tools to help you at each stage are available at mhsafe.org/options):
5 Steps for Responding to Stigma
- Clarify what happened (Did this occur?)
- Is this stigma and/or discrimination?
- Is this unclear?
- What are some other possible explanations?
- Cope with trauma (How do you feel?)
- How was I harmed in ways I am aware of and may not realize?
- What self-care resources can I access?
- How can I stay regulated, manage early warning signs, and address crises?
- Collect evidence (What can you prove?)
- How can I appropriately document possible stigma, microaggressions, and/or discrimination?
- How can I keep an open mind that it may not be intentional, or it may be my sensitivities contributing to my reaction?
- Cultivate support (Who can help you?)
- How can I decide who in my personal and professional life or what third parties I can contact for support?
- What are appropriate ways to seek support?
- How can I be mindful in navigating the awkwardness, professionalism norms, and vicarious trauma that comes from my sharing my story with supporters?
- Consider your rights, options, and limitations (Should I respond? How?)
- What are the relevant organization policies, laws, and rights that may help me?
- What are the practical realities that may make it not feasible for me to exercise those options (delays, burdens, backlashes, ambiguities, my sensitivities)
- What are the possible self-protective, collaborative, and assertive options to move forward, and how can I pursue them?
- What choice do I want to make (not what anyone says I should do)?
An Example of a Protective Response
Even if we believe we are sure that something stigmatizing happened, we may decide to protect ourselves from the stress or backlash from speaking up. For instance, as a speaker living with bipolar disorder, there have been many times that participants in one of my programs or professionals who have hired me to speak say upsetting things that feel demeaning.
Once, someone told me, “I never would have guessed you were bipolar until you started speaking so fast at the end,” – and sadly, this is amongst many upsetting comments I have regularly encountered. Even though, in my head, I had clarified that this was stigma, my coping was to let it go rather than deal with the difficult conversation about addressing it.
Kevin Nadal, an expert on microaggressions, prepared a guide to respond to microaggressions that contain similar advice – microaggressions are so frequent, so upsetting, and so hard to discuss that his guide suggests people consider whether it is safe to bring up the issue and worth doing at all given the pain. The point is not to trivialize the immense trauma from each instance of stigma – but rather to acknowledge that the world is an ocean filled with endless possible stigma, and we might drown if we try to fight every drop of it.
An Example of a Collaborative Response
Part of my work has been addressing published guidance that teaches people discriminatory practices regarding individuals with mental illnesses, including guidance with inappropriate recommendations to screen out parties who have these conditions or otherwise treat them differently. This is often illegal under the Americans with Disabilities Act (ADA), but many people sadly do not realize that mental illness discrimination is an issue, so they often don’t believe they are doing anything wrong by publishing instructions to screen people with mental health conditions. You can read some examples of this problem in the dispute resolution world in an article at https://bit.ly/ABADiscrimination.
In this case, because this information was published, it was easy for me to clarify that the problem was real and to collect evidence from the published guidance. Coping is still important – it is painful to read this type of material, to appreciate how these kinds of policies and practices are demeaning countless people with mental health problems like mine, and to encounter the indifferent, confused, or avoidant reactions of people who might be dismissive when I bring it to their attention – so I cultivate support in my life from my therapist, my friends and support system, and other professional contacts before I address the issue. Then, I consider my options, and because I am a mediator, I offer ways to collaborate and discuss the issue. This has often led to great successes and learning opportunities, including people changing their policies and publications. For examples of this in the dispute resolution world, visit mhsafe.org/preventing/ and mediate.com/ending-mental-illness-discrimination-in-dispute-resolution-and-beyond-some-2023-updates/.
Collaborating with others can be hard. It involves being vulnerable, forgiving, and showing empathy to the idea that most people are not purposely stigmatizing someone. It requires self-care as well.
An Example of an Assertive Response
There are also times, after considering our options, we may decide to file some kind of complaint. Organizations such as schools or workplaces have non-discrimination and non-retaliation policies to protect you from backlashes after making a complaint, though they are sometimes poorly implemented.
We also have legal protections under federal, state, and local disability laws. I have had some success in filing complaints, including times when discriminatory content was changed. But even these successes can be taxing – it can be painful to sometimes see my complaint dismissed right away, to experience cold reactions from various institutions, to have my pain trivialized, and to endure long, sometimes costly, investigatory processes only to receive little information at the end.
One goal of the Mental Health Safe Project is to give people tools to make the complaint process easier and to also fill in the gaps from many of the “Know Your Rights” circulating pamphlets. Yes, you have rights, but sometimes asserting them can be very hard. You often have to be able to collect tangible proof, which is difficult when someone is not publishing harmful content, as I mentioned earlier. There is a lot to cope with because you are often a lone individual engaging in an adversarial process with some institution. At mhsafe.org/options, you can see some resources to help you consider your next steps while having a full sense of the burdens and backlash that may come with some of these more formal processes. Additional assertive options include speaking up to tell your story and seeking help from less formal advocacy efforts.
Conclusion: Stigma Hurts, and You Have Choices
Every act of stigma is hurtful, disruptive, and it can seem like its effects ripple forever. Unfortunately, the world is filled with mental illness stigma, and people living with mental health problems are affected by it regularly, in some ways that can be seen and in many ways that cannot. Sadly, many of the perpetrators of stigma do not know they are doing it. They are hurt, too, because they create problems they do not understand.
It is impossible to notice, prevent, or address every act of mental illness stigma. But when we choose to reflect on something that happened and make our own choices about how to handle it, we can use the five-step (5 C’s) framework to clarify what happened, to cope with the feelings, and take care of ourselves, to collect evidence, to cultivate support, and to consider our options of how we can move forward – perhaps by acting protectively toward ourselves, or by collaborating with others, or by asserting our rights.
See more information and campaign images at www.mhsafe.org/options.
Dan Berstein, MHS is a mediator and mental health expert living with bipolar disorder, working to help people use conflict resolution best practices to have empowering mental health communication and prevent mental illness discrimination. As Chief Advocacy Officer of Mindquity, Dan works to help legal organizations have resources to prevent inadvertent discrimination and respond when it occurs. Dan also wrote the American Bar Association book, Mental Health and Conflicts: A Handbook for Empowerment, and he leads advocacy efforts through the Mental Health Safe Project, with free resources available at www.mhsafe.org.
