Living With Alopecia

Normally I discuss topics that revolve around politics. This post will revolve around a politician but will put politics aside. The Congresswoman is Rep. Ayanna Pressley (D-MA). In a recent article and interview posted on Pressley announced she was living with alopecia. For those of you who are unfamiliar, alopecia areata is an autoimmune skin disease, which causes hair loss on the scalp, face and sometimes on other areas of the body.

The National Alopecia Areata Foundation (NAAF) is an organization that is dedicated to finding a cure for alopecia. Their website gives insight into the medical condition and lists the various levels of alopecia illnesses and severity. The three main forms of alopecia are Areata, Totalis, and Universalis.

Areata is the most common form. People who suffer from it will notice one or more coin-sized hairless patches on their scalp or other areas of their body. Totalis is the total loss of hair on the scalp. Universalis is the complete loss of hair on the scalp, face, and body. According to NAAF, currently, there is no cure for alopecia areata. But the good news is that even when the disease is “active,” the hair follicles remain alive. This means that your hair can grow back again — even after a long period of time and even if you have more than 50% hair loss.

Living with alopecia is extremely difficult and emotional. I speak from personal experience. When I was a teenager I lost my eyebrows. I didn’t know what it was at the time. I took some medicine and my eyebrows grew back. Then when I was 16 or 17 I was sitting in a barbershop getting my haircut. The barber pointed out that I had a bald spot the size of a quarter. I went to a dermatologist and was told I had alopecia. The doctor prescribed some cortisone shots and the hair grew back.

When I was in my early twenties, I was going through a very stressful part of my life. The stress caused my alopecia to reactivate. So much so, that I was losing my hair in large clumps daily. For seven months I received cortisone treatments via needle injection from my dermatologist on my scalp and face. I had specialized medicine flown in from Europe. Nothing helped. After close to a year of personal stress, which was compounded by the irregular hair loss, brought on by alopecia, I lost all of the hair on my body. At the age of 23, I went from having a full head of hair to having no hair on my body at all. It’s over twenty years later and I am still living with Alopecia Universalis.

Jessica Moulite’s interview with Ayanna Pressley was very moving and worth reading and watching. I’m including the short video on my site so you can watch the Congresswoman speak about her struggle with the illness. In it, she goes public for the first time about her experience with alopecia and shows herself without the aid of a wig or hairpiece.

Here is a portion of that interview.

Rep. Ayanna Pressley first became aware of her hair loss last fall while getting her hair re-twisted. Very soon afterward, she was waking up every morning to total hair loss across the scalp.

The hair loss created additional challenges in an already-demanding Capitol Hill schedule, requiring Pressley to creatively conceal her growing baldness in the middle of getting votes, attending committee meetings, and giving press conferences.

The night Pressley lost her final piece of her hair was pivotal, she says. Not only was it the night before Donald Trump’s impeachment vote in the House of Representatives, it was the anniversary of her mother’s death. The sense of loss was manifold.

“I was missing her. I was mourning my hair. I was mourning the state of our democracy. I was mourning my mentor, Chairman Elijah Cummings,” she said.

Pressley had already been accused of being “militant” when she wore her hair in twists, so she knew her bald head, stripped of context, would undoubtedly be viewed as a political message. So, she immediately sought out options. She called her friend Angela Rye, who connected her to “hair caregiver” Jamal Edmonds. Edmonds quickly created a custom wig for the Congresswoman, hours ahead of the time she was scheduled to deliver her vote to impeach the President of the United States.

“When I saw myself in the mirror, he had done a beautiful job, but I did not recognize myself,” she said. “I was wearing this wig, fully clothed. But in that moment, I couldn’t recall the last time I’d ever felt more naked.”

After voting on the House floor, Pressley left and hid in a bathroom stall, feeling exposed, vulnerable, and embarrassed. It was at that point that she remembered those same little girls looking up to her—and decided that when she was ready, she’d go public with her condition.

“I want to be freed from the secret and the shame that that secret carries with it,” Pressley said.

Though she’s still in the process of making peace with having alopecia, Pressley added that she’s making progress every day.

“It’s about self-agency. It’s about power. It’s about acceptance.”

And now that she’s public, she wants to experiment with different styles even more and find joy in those options.

I commend Rep. Pressley for coming forward with her medical condition. Having alopecia is a club that nobody wants to join and few have heard of until they or someone they know has it. Losing your hair in an accelerated and aggressive fashion is unlike traditional male or female pattern baldness. When your hair is falling out in clumps and leaves you with half eyebrows, quarter eyelashes, and all-around spotty scalp, you want nothing more than to hide from the world. Searching for a cure that is yet to be found leaves you feeling helpless and depressed.

Ayanna’s statement of finally feeling free of shame and her decision to show herself to the world as she is now was one of empowerment. It’s the same way I felt when I decided to shave off the remaining hair I had left on my head. At that moment of acceptance for who I was now and not who I used to be, I felt a feeling of freedom. The kind of freedom one only feels from a sense of liberation. By accepting my alopecia as my new normal it allowed me to let go of the past and forgive myself for an illness I had no control over. Most importantly, it forced me to accept myself for who I truly am and not the person who I wished I was or should be. By being honest with myself, and not hiding behind hats or hairpieces, it forced me into a place of self-introspection. I could choose to be depressed and live in the past or I could choose to love myself and look forward to the future. When it came to relationships I knew that whomever I ended up with would ultimately love me for who I truly was, inside and out. At the end of the day, that change in physical and mental outlook was the best thing that ever happened to me.

When men have alopecia they can shave their heads and it looks like they became bald prematurely. When women suffer from alopecia it can be devastating. So much of a woman’s perceived beauty stems from their hair. For many, the hair is the crown on a queen’s head. Not having it can leave them feeling ugly and unworthy of love. Ayanna Pressley’s choice of acceptance and reclaiming her beauty reminds anyone who is struggling with this or any other illness that true beauty comes from within. Her courageous decision to come forward publicly should be an inspiration to many and celebrated by us all.

While Rep. Pressley has been in Congress for less than a full term and has gained national attention for being a member of “The Squad” her willingness to come forward with her medical condition is sobering. Though we all may not agree with each other on policy, we can and must remember that we are all human. Alopecia like many other illnesses has no regard for race, religion, ethnicity or gender. It certainly does not care about political affiliation. As we continue with our lives and move closer towards the next election, let her willingness to be vulnerable be an example of strength and civility. The kind that shows what compassion for one another can be.

Alopecia Ayanna Pressley

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