To Feel Again: The Strength of a Support Community

• Alopecia
• Autoimmune Diseases
• Chronic Disease
• Disease Management
• Health Personnel
• Health Promotion
• Mental Health
• Quality of Care
• Resilience
• Self Care
• Self-Help Groups
• Social Identification
• Workforce Diversity

As I walked through the revolving entrance doors, I was greeted by cheerful, beautiful bald women wearing bright colors. Each hug washed away the uncertainty and guilt that I was harboring about taking time off from work to attend this event. The hugs also helped me intentionally shed my metaphoric white coat, physician title, and stoic “I am fine” attitude. I was not Dr. Rodgers this weekend. I was just Angela. It had been many years since I had been just Angela and I was looking forward to it.

“Welcome to Baldie Con! I am so happy you made it!” The founder of the conference greeted me with a tight hug.

Baldie Con is a conference for women with baldness from any cause: alopecia areata, lupus, trichotillomania, scarring alopecia, telogen effluvium, chemotherapy, by choice. I had been in spaces with hundreds of bald alopecians in my work as a former support group leader and consultant, but this was different. 1. This space was for those who identify as women. 2. This space was predominantly women of color, Black women. 3. This space was focused on community, not research or being a patient. These elements created a powerful space of joy, support, comfort.

Women have a unique relationship with hair. Growing up in a society that places value on a woman based on the presence and quality of her hair, I was obsessed with this physical characteristic growing up. The compliments that I received on my hair texture and styles confirmed the importance of this societal norm. The loss of my hair in college led to the loss of my self-worth. My chronic disease made me feel a heightened sense of loneliness, shame, and blame. As a doctor, this mentality felt 10 times worse as society expects doctors to be perfect without flaws. As a woman, I have been led to believe that my family and community expect me to have it all together. Only through therapy, prayer, and a support group was I able to put back together the pieces of my shattered self and refocus my purpose. The comradery that was created at Baldie Con among women redefining beauty and self-love was palpable.

Black women have an even more unique relationship with hair. After decades of not having agency over the body, Black women have had their hair viewed as unprofessional, political, and in some cases the subject of cultural appropriation.^1–2 Hair means strength, personality, and confidence for me and many Black women, making its loss detrimental to relationships, daily functioning, and to oneself. In some ways, in promoting conformity and uniformity in the name of professional identify formation, the culture of medicine can inadvertently wash away one’s personal cultural identities. As a doctor, it is overwhelming to find an outlet to discuss issues of race, ethnicity, and culture when I am many times in an environment where no one looks like me. It is also hard to initiate a conversation when differences are not openly acknowledged. The medical community is getting better, but there is still a lot of work to be done. Witnessing emboldened Black women share their stories, advice, and spirit within this community validated my experiences as a bald woman of color. No matter how old or accomplished I get, validation feels good and contributes to my well-being.

For the past 10 years, when I participated in a conference, I was the doctor. Before that, I was the patient. I did not know that I could just be Angela, the young woman who happens to be bald, who happens to have an autoimmune hair loss condition. I could just be me. But the women at the conference took it one step further. They celebrated their baldness and used their physical appearance to connect with others and themselves. After my years of therapy, countless tears, and rollercoaster of emotions, I assumed that I knew all there was about women with hair loss. I thought I knew everything about chronic disease. I thought that I had conquered that part of my life. I was wrong.

The practice of medicine can perpetuate the stereotype of superhuman physicians. I do not need to eat, use the bathroom, sleep, or spend time away from work. I do not have feelings. This conference was a much-needed reminder that I am human. I have various identities that intersect to make me unique. In general, physicians have chronic diseases, whether they be physical or psychological, that need to be comprehensively managed. I yearn for the validation and normalization that I provide my patients every day. This comes from connection with those who have shared experiences. I recommend finding supportive communities for my patients all the time, but I was not offering that same social prescription to myself. Engaging with others with my shared experiences living with alopecia was essential. Community is key.

This experience significantly and unexpectantly impacted my own relationship with my patients by allowing me to be more authentic specifically with my patients who have chronic diseases. I no longer felt like a hypocrite by instructing them to join a support group or encouraging them to manage their chronic disease when I was not doing the same. I finally understood how a patient could put off prioritizing their disease because they did not feel any symptoms. I realized that some symptoms, such as the psychosocial impact of a disease, are invisible but negatively impact nonetheless. Now, during my history gathering, I listen more closely for those symptoms that are unseen but present. My bedside manner is gentle but persistent in sharing resources and encouragement for chronic disease management.

As I listened to the motivational conference speakers, became acquainted with the attendees over meals, and danced the night away at the evening gala, I could not deny it any longer. Like an egg, a piece of me that I thought was “fine” had been cracked wide open. I was overwhelmed with feelings of belonging, pride, and contentment. Family Physicians with chronic disease diagnoses, please find your community. I found mine 30 years after my diagnosis. It is never too late. I was amazed by what it added to my life. For Family Physicians who do not have a chronic disease, the message is the same, stay connected with others. We can all benefit from connection. After decades of suppressing my alopecia, nothing is better than permission to feel again.

• Received for publication March 12, 2024.
• Revision received July 19, 2024.
• Accepted for publication August 8, 2024.