Black hair is both personal and political.

Black hair is both personal and political. September is Alopecia Awareness Month and I wanted to share a bit of my story with you:

In late 2019, I was diagnosed with alopecia totalis, an autoimmune disorder that attacks hair follicles. I used every tool I could to try to prevent my impending hair loss. I wrapped my hair. I wore a bonnet. I slept with a silk pillowcase. I feared going to sleep and waking up with more of my hair falling out. The person I saw in the mirror no longer felt like me.

Nearly 7 million Americans live with this disease, which disproportionately affects Black women. Some people may say that it’s “just hair.” But for me, and for many people living with alopecia, our hair is intrinsically linked to our identity and our cultural expression.

So when I lost my hair, there were innumerable private struggles. The hardest part was experiencing a transformation, not of my own choosing, in a highly visible role as a freshman member of Congress.

I lost my hair over the course of just five weeks. I went completely bald the night before I voted to impeach Donald Trump (for the first time). I wore a wig on the House floor to cast my vote. On a day where my job called me to stand up and lean into this powerful moment, I felt so ashamed. As soon as I finished my speech, I ran to the bathroom and cried for the first time since my diagnosis, mourning the loss of my hair and a large piece of my identity and culture.

But right there in the bathroom, I made a decision: I wanted to be free from this secret. To stand in my truth.

Since revealing my diagnosis, I’ve received an outpouring of love from people across the globe who also live with alopecia. Early on, I received a note from an elementary school-aged girl. She wanted to give me some tips about navigating life with alopecia. She told me about the first time she walked into school after her diagnosis: “Just walk up to your friends and tell them: I’m still me,” she wrote.

Who couldn’t use a reminder like that as they navigate the world?

Are you part of the Alopecia Squad, or have you taken on a physical or personal transformation that changed your life? What helped you navigate? Please tell me your story here — and we’ll share a few responses with this community. Our stories deserve to be told, and we make each other stronger.

My alopecia journey has reinforced to me that we each deserve to show up in the world as our full authentic selves. I always say, I’m not here to occupy space – I’m here to create it, and to chart a path for others to do the same.

Onward,

Ayanna