I started organizing in 2008 while living with Bipolar Disorder. The “Healthcare for America Now Campaign” was personal. It was the first victory on a pathway toward a more equitable, accessible, quality care healthcare system. Afterwards, I was fighting alongside janitors and security officers for access to better wages, work protections, strong retirement plans, and quality healthcare for over a decade as a union organizer. The challenges I faced navigating the everyday campaign stress and expectations as a person living with Bipolar Disorder were numerous, to say the least. I have spent time reflecting on how I have sustained myself and kept hope in the center on the continued movement journey. Now I am sharing my story to help others speak up for accommodations or support needed in social justice organizations. Disability justice is at the core of this conversation. Social justice organizations need more opportunities to practice disability justice in our movement space.
Dr. Roshnee Vázquez is collaborating with me. As a specialist and as a survivor of Bipolar Disorder, we also want to shed light on tools that can help one be successful with the disorder, including medicine and therapy.
These practices and services provide a foundation for someone living with a mental health diagnosis. Many can apply in the general community as well. As organizers, we are facing traumatic events every day, such as police killings, climate catastrophe, economic downturn, and crises in democracy. In order to sustain ourselves in the movement, we need strong practices and services to support leadership development in the sector. Some people are burning out and unable to find sustainability in the work.
Out of the haze
As a survivor, my story isn’t perfect––nor is it a definitive blueprint. I want to name things that work for me as a starting point to help others on their journey out of the haze. I strive to live my life without limitations. I am in a career and leadership structure that allows reduction of stress, in an industry I am very proud to be a part of. I was first diagnosed in 2008. Fast forward to 2015, when I really started understanding my triggers and redesigning my life. I ground my life on three tenets:
- I define success for myself.
- I live out my core values through my actions.
- I control what’s within my control.
Designing a healthy and purposeful life isn’t any different for survivors of Bipolar Disorder than anyone else. Mental health and its management is not limited to individuals living with mental health diagnoses, just as physical health care is not limited to those with chronic physical health conditions. I strongly feel having this grounding has provided me the strength on hard days to use my tools.
Mental health and its management is not limited to individuals living with mental health diagnoses.
Like any person living with a chronic medical condition, you need to be clear on the symptoms and causes of the disease. In 2015, I learned quickly how stress increases my cortisol levels, changes my biochemistry, and can invoke either depression and/or mania. In other words, stress causes my version of a heart attack. These tools can help everyone in the movement manage their mental health and avoid burnout––mental and physical exhaustion, difficulty coping and functioning, and overwhelm of our nervous system.
Throughout this process of learning and healing, boundaries have been such a gift to me and others. You wouldn’t tell a person who has diabetes to keep on eating high sugary foods even though they just tested off the charts, right? I learned quickly that boundaries are my guideposts. Boundaries are not focused on keeping people away––rather, they are centered on maintaining our sense of physical and emotional safety. The role of boundaries is often misunderstood and seems counter to what is also needed when managing any chronic illness: connection. Implementing healthy boundaries does not diminish relationships. Rather, it creates a framework for the kinds of safe connections that create the support safety net we all need. They help facilitate a kind of openness in communicating our needs. Saying no allows me to live my fullest life while respecting my condition.
Treatment
Successful treatment of Bipolar Disorder is multifaceted. A solid treatment plan and treatment team are essential, as is the everyday infrastructure of boundaries and opportunities to have meaning and purpose. Psychotropic medications play an important role in living a full life. They aren’t a panacea, but they provide a critical foundation that allows individuals to create the life they want. Having a prescriber that you can trust, that hears you, and that sees you is invaluable as individuals navigate the goal of finding what’s the best medication for them.
Additionally, you need a solid relationship with a therapist: a licensed therapist with expertise and interest in treating individuals with Bipolar Disorder, a licensed therapist who will be there through your ups and downs. There are a variety of modalities––Dialectical Behavioral Therapy (DBT), Cognitive Behavioral Therapy (CBT), traditional talk therapy––that can be employed. A good licensed therapist will know when to reach for what intervention because the most effective therapy is one that is responsive, not pre-prescribed.
Dialectical behavioral therapy in particular teaches us how emotions are important in that they can provide us data, keep us safe, and communicate our experience. Some individuals may feel their emotions more intensely than others and can benefit from learning tools to regulate them so that they can maintain a sense of safety. But that does not make emotions the enemy. This point is critical for someone navigating fluctuations in mood. Additionally, the DBT concept of radical acceptance can shift someone from the paralysis of thoughts like, “Why is this happening to me?” or “I do not have bipolar disorder,” to the freedom that with acceptance, with full mind and body, a door opens to make the kind of changes that set up future successes. A good therapy plan for living with Bipolar Disorder also includes a focus on identifying triggers and vulnerabilities, evaluation of current support network, and creating a safety plan for when things begin to feel challenging.
Obstacles to access
Access to mental health care remains an obstacle. Many psychologists in private practice do not accept insurance, therapists that take insurance are often at capacity, and many folks are uninsured with limited income. Applying for Medicaid and other state benefits is an option for some individuals. Those benefits are not widely accepted but can provide access to many community- and hospital-based clinics. People who do not qualify for Medicaid and similar coverage face the task of hunting for a sliding-scale option. One possibility could be a clinic run by a doctoral program staffed with doctoral trainees who are supervised by seasoned, licensed clinicians. Such clinics offer generous slides. All that being said, the reality of accessing consistent, quality care remains challenging – and that is an understatement.
An additional barrier can be the limited number of clinicians that identify as BIPOC, LGBTQ+, or differently abled. We know that for many members of marginalized communities the lack of representation can be a barrier to remaining in care. Fear of being misunderstood, overly-pathologized, or disregarded plays a role in discouraging communities from seeking proper care. There has been increased attention in building networks for specific communities to help with this issue. Some examples include Therapy for Black Girls, Latinx Therapy, and Inclusive Therapists that provide nationwide directories. These directories are more tailored to meet the needs of individuals looking for more of a match as far as identity. They are a great supplement to more general directories such as Psychology Today.
Challenges of being a Black woman with bipolar disorder
The other challenge living with this disease as a Black woman is that at times professionally I’ve felt written off or seen as having a manic episode when holding people accountable or making life choices for myself. A Black woman with a clear agenda is dangerous––a Black woman executing a clear agenda is even more so. Black women are perpetually experienced as aggressive, dramatic, difficult, and irritable. Consider the impact of adding a Bipolar Disorder diagnosis to the already mischaracterization of women living in a Black body. The act of advocating for self and setting of boundaries––something we know is critical for living with Bipolar Disorder––can be interpreted as being a difficult person given the racism woven into the fabric of our society.
It’s critical to understand that mania and depression are not the same as being happy or sad. Bipolar disorder does not impede you from making calculated risky life decisions. Though it is understood as a chronic condition, it is not a life sentence that condemns you to a loss of autonomy, aspirations, and fulfillment.
The sharpest illustration of this came when I chose to exit my labor career. It was the hardest decision in my life. After over a decade, I moved across the Midwest with a great desire to fight alongside property service workers. In 2019, it was clear–there was misalignment on treating me with respect and dignity. Most importantly, the internal politics and personal ambitions to seek individual power involved in the campaign were not on my agenda, and vastly different from my ideals of creating democratic space and shared power.
For seven months, I debated with my therapist how to maneuver the situation prior to making the final decision. The actions taken after the departure were hard to say the least. I was very open with my disability and diagnoses with my supervisor. Upon departing the organization, my previous supervisor advised the new employer that I wasn’t allowed in the building. My new employer stood alongside me and understood there were no implications that I was in a manic or depressive state. It still hurts to think about it. My heart has mended and the scar is freshly healed from it.
I remember having conversations with close colleagues, who reminded me more and more about why I left, and helped to affirm that this wasn’t an episode of mania or depression. Rather, it was a moment to be a change agent, demanding respect and dignity for myself as I discovered what I wanted out of life.
Disability justice
As I live with a disability, I am constantly engaging with my environment on how to ensure the best health circumstances for myself. Disability justice builds on the disability rights movement, taking a more comprehensive approach to help secure rights for disabled people by recognizing the intersectionality of disabled people who belong to additional marginalized communities. I am Black. I am a Woman, I am a Bipolar Disorder Survivor.
My liberation is intertwined with gender, race, and disability struggles in the US. There are several intersections of Disability justice and other marginalized communities’ struggles in the US, such as anti-Blackness, insecure housing, and reintegration of returning citizens.
I have learned to navigate resources at the workplace to keep me healthy. Nonprofits that are social justice-oriented or mission-driven should provide adequate leave policies as well as educate teammates on ableism practices and language. Most importantly, destigmatizing mental health disorders is essential. I don’t know how many times I have heard the comment, “She’s being Bipolar,” or, “The weather is Bipolar.” This language is harmful and inappropriate to use as everyday slang.
Lastly, my fellow mental health companions, your disclosure is up to you. I urge you to always start with a level of trust and transparency with who you disclose your diagnosis with in the workplace. After over 10 years living with diagnosis, I have worked hard to set a foundation to be outspoken on my disorder. This foundation is on the shoulders of an amazing support system. Support from both allies at work and outside of the workplace.
The beauty of life
Life is beautiful. I take my calling for social justice very seriously and I want to find the joy among the chaos. I recently made some pivots to be closer to my home state. It is a joy to be around people who love me outside of my role in social justice. A gift that was missing for a very long time.
Today, this gift keeps me even more grounded. I stay ready to continue to lead with an open heart, share power, to be a change agent. Most importantly, I stay ready to remain healthy and committed to my tenets and live life on my terms.
I have a deep desire that these words will be the beginning of dialogue on mental health and hope for people to show more curiosity rather than judgment on those who live with mental health disorders. To my fellow Bipolar Disorder survivors, “It’s really hard,” and it is oh so beautiful. May you find the joy among the chaos.