Living With Hair Loss: My Story

With my sisters in Mexico, April 2023

If you’re someone who has spent time with me over the past year, whether on zoom on in person, you might have noticed that my hair keeps changing—different colors and shapes, seemingly overnight. You might have complimented me on my hair and perhaps noticed my hesitancy before saying thank you. And, you might be someone I’ve told about what’s actually going on with all those different looks. Or you might have no idea what I’m talking about—which is also just fine.

Over the past year or so I’ve gone from having a full head of hair to absolutely no hair. I don’t have cancer—it’s an autoimmune condition called alopecia areata. Even though I’ve had prior bouts of hair loss, I never contemplated the possibility of losing all my hair. This post is the story of my learning to live with alopecia.

I am a practioner of yoga, meditation and more recently a methodology called Thinking Body-Feeling Mind (TBFM™)—which I’ll share more about later. I studied coaching methodologies that focused on learning to navigate stress and triggers and we always began our work with ourselves. My practices have been part of my life for many years and helped me to stay centered and grounded when the pandemic began in 2020. So, my “toolbox” was quite full when, several months after having a light case of COVID, I began to lose hair. I’d had episodes of hair loss for almost twenty years—I wasn’t particularly surprised or alarmed. My (copious!) internet research indicated that this was a fairly common response to COVID—especially if you’d had prior episodes of alopecia. The one thing I knew for sure was that my hair would grow back—it always did. My practices coupled with my prior experiences seemed to be working.

Gradually I began to realize that this time was different. My hair wasn’t growing back—it kept falling out. Creams, shots, and acupuncture made no difference. There were still piles of hair in the shower and sink. Just as the severity of my hair loss was beginning to reveal itself, one of my closest friends, twenty years younger than me, was diagnosed with colon cancer. That, plus a stoic streak inherited from my mother, resulted in my insistence that losing my hair was not a big deal. It wasn’t cancer. I wasn’t sick. So, I did the very opposite of what I had been practicing. I suppressed my feelings and did not allow myself to experience the pain, the loss, and the deeper, more complex challenges of hair loss. I knew that hair and identity were intertwined and could talk about that—but on a purely cognitive level. I did not fully admit to myself that I was scared about my health—for the first time in my life. If I was losing my hair, was there an underlying systemic issue? I was not able to get a good answer to the question so I tried to ignore it.

Meanwhile, I was about to facilitate several in-person workshops and the headbands that worked on zoom wouldn’t work in a room full of people. I didn’t have enough hair to cover the bald spots that were showing up on the back of my head, not only the front. While I was still confident my hair would grow back (it ALWAYS did and my dermatologist at the time told me it would,) I had to do something now. I spent a small fortune on a wig and faced the world with hair that was easy to care for and looked better than my own. Problem solved. At this point, I was still in the “no big deal” phase and trying to solve problems as they emerged, but was avoiding the underlying, more complex questions. (A note for anyone reading this who may be struggling with hair loss and wants to go the wig route—I’ve since learned that there are affordable wig options.)

After several more months of watching myself lose hair and beginning to acknowledge that I wasn’t dealing with it, I asked my coach, Wendy, a skilled somatic practitioner, that we spend a session on my hair. This was a first and critical step in the process of acknowledging that this was, in fact, a big deal. I took that hour to release, to cry, to begin to allow all the feelings I’d been suppressing. What poured out was sadness, embarrassment, and shame. How could I, who had a bucket full of practices and had been meditating for close to 15 years have a stress-induced condition? Was I a fraud? How could I support others dealing with stress and anxiety if I had a condition that resulted from stress when I thought I was handling things well? (Medical note: alopecia is not primarily a stress response—this is something that most medical practitioners, including my first dermatologist, don’t realize, yet is increasingly clear in the research. I now understand that and wish I did then. )

Wendy and I designed a new practice. Every day I stood in front of a mirror and allowed myself to feel what happened when I looked at my head. It was profoundly uncomfortable at first but gradually, over time, the discomfort eased, and I was able to accept—and even, in rare moments, admire what I saw. My sense of shame gradually dissipated and while I still have a lot of feelings, that’s no longer one of them.

I continued the “mirror practice” as I lost most of the hair that was left. One night, while I was visiting her in New Mexico, my sister (one of the two in the picture above) cut off what was left of my hair, getting rid of what we had dubbed my “bad Einstein” hair. A few weeks later my husband finished the job and shaved my head completely. The amount of love, trust and gratitude I felt in those moments went deep. Around the same time, I found a dermatologist who understood my questions and was able to allay my fear that a deeper, more systemic physical problem was lurking. I was an otherwise healthy person with an autoimmune disease. He also helped me navigate the medical interventions that were available to me and come to, at least for the moment, the conclusion that I would not do anything medically. The potential side effects of the drugs that were available were not ones I wanted to be dealing with. (Note: I’m generally conservative about medications for this very reason—but as I learn more about these drugs I am increasingly questioning that conservatism—there are new and exciting treatments emerging for alopecia.)

My family grew used to seeing me without any hair covering as I took off my wigs and even turbans when I was home. Outside of the house I was growing more comfortable changing wigs, caring less whether people knew I was wearing one and becoming more comfortable telling people that I had alopecia. I was learning to speak of it matter-of-factly and that seemed to reduce the level of distress and pity in their responses. I was able to simply say that this was happening and move on.

I chose to share pictures of me and my sisters to illustrate this post. You can see me in one of my synthetic, less expensive wigs, while we were on vacation in Mexico and in a big floppy hat in Florida, when we were celebrating my husband’s birthday. These trips were inflection points for me—getting over embarrassment and learning to be less self-conscious had to start with the people I loved most. I’d read that people with alopecia often stop going out because they don’t feel comfortable in public. I was committed to not letting hair loss stop me from living fully. I am forever grateful to my family and my closest friends for making that easier by helping make it (and me) feel more normal.

Throughout this time I practiced with Linda Lack, the 76-year-old former dancer who created the movement system or method called TBFM™—Thinking Body-Feeling Mind. Working with Linda had already helped me access a deeper inner confidence. Through the pandemic TBFM™ was one of the most important tools I had for staying centered and grounded. It was a refuge in an anxious time. Now TBFM™became a space to practice becoming more at home in this new version of me. TBFM™ is not only—or even primarily—about external movement—it’s equally about interoception—being able to feel and notice what is happening inside. When things are happening outside, it’s very helpful to have a practice that goes inside.

TBFM™ further deepened my capacity to more consistently navigate strong reactions and be less overwhelmed by them. Linda knew what was happening with my hair and her studio became a place where I could be fully in my body and find more ease, releasing what I was holding on to. Her studio is full of mirrors, so it was also a place where I extended my mirror practice, learning to see myself as strong and powerful. Growing stronger in my practice helped me feel that hair was not defining me.

I also discovered the National Alopecia Areata Foundation and signed up to attend a patient conference. The conference was a place where I could meet and talk to other people like me and gain both information and solidarity. I met people who chose to go bald, who never took their wigs off and every form of hair cover you could imagine. I expect that I’ll continue to attend—I’ve never been part of a support group until now but this time it’s been important to feel a sense of community and connection and also explore ways of being with alopecia that I’d never considered. (A few pictures below—including one with Grammy Winner Molly Tuttle!)

So that’s where I am today. There are still days when I wake up and look in the mirror and am shocked. It’s as if, overnight, I’ve forgotten that I have no hair. There are other days when I wake up, look in the mirror and feel, for lack of a better word, badass. And everything in between. I am learning to let myself feel whatever I’m feeling and let it move through me.

A final note: I’ve wanted to write about my hair for months—tried to write this post more times than I can count. My hope is that it will help my friends and my clients understand that while this is, in fact, a big deal—I’m ok. And perhaps be a support to others dealing with similar challenges. While I can’t consider this a blessing and would be very happy if it had never happened, I am learning and growing. It’s a journey—and there is a way through it. I also hope it is a testament to the value of practice, the importance of teachers and the power of love. While we can’t change reality, we can learn to navigate even the hard stuff—and I’m convinced that we can’t do it alone.