[1]Ayanna Pressley
Today, along with nearly seven million fellow Americans, I am living with
alopecia — an autoimmune disease that attacks the hair follicles. Although
it’s a common condition, the experience of this disease is deeply
individual, and the course it takes is different for each person.
Alopecia disproportionately affects children, Black Americans and,
particularly, 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.
We all have our own unique stories about our alopecia diagnosis. Mine
began nearly a year ago, when my braider noticed a small patch of baldness
on my head. What started as a few small patches quickly spread. I remember
the moment vividly: I was alone in my D.C apartment, on the same day that
would have been my mother’s 72nd birthday and on the eve of an impeachment
vote. I was standing in the bathroom, staring at my reflection in the
mirror and, for the first time, I was completely bald.
For months I had dreaded the moment when it would be all gone,but, looking
at myself in the mirror that night, I felt relief, peace, and acceptance.
It was a moment of grace and I thank God for that.
In a matter of weeks, I lost my eyelashes, eyebrows, and the rest of my
hair, and was diagnosed with alopecia universalis — one of three forms of
alopecia. I am still coming to terms with my new reality and the impact of
my hair loss. Every day, thanks to the support of my family, my staff, the
broader alopecia community, and others who have experienced hair loss, I
am making progress.
I am making progress despite the hateful comments, the cruel and constant
online harassment about my baldness, the intrusive and ignorant questions
on the elevators, the unsolicited advice, and the stares. Lots of stares.
No doubt about it, a bald woman entering a room, entering the floor of the
U.S. House of Representatives, makes people uncomfortable.
Visually, it challenges every antiquated cultural norm about what is
professional, what is pretty, what is feminine. But in the loss, the hurt,
and the ache of it all, I’ve never lost sight of the following: I am Sandy
and Martin’s daughter. I am Conan’s wife, I am Cora’s step-mom, and I am
the Congresswoman for the Massachusetts’ 7th Congressional District.
I am now bald. But I’m in good health and in incredible company. I’ve
received an outpouring of love from people across the globe who are living
with alopecia. Early on, I received a note from an elementary school-aged
girl with alopecia. She wanted to give me some tips about navigating this
new normal. 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?
Those little acts of kindness and solidarity have defined this experience,
too. I’m proud to be in the company of those fighting for people living
with alopecia. There’s an entire community that has been working
tirelessly to share their stories and to educate the public on the impact
of alopecia.
For three decades, the National Alopecia Areata Foundation has been
working to garner congressional support for research and treatment
development. My long time friend and partner-in-good, Congressman Jim
McGovern, introduced legislation to allow medical wigs to be covered under
the Medicare program, so that every senior living with alopecia can afford
wigs or other head coverings. This year, the house passed my amendment to
provide an additional $5 million dollars in next year’s funding for the
National Institutes of Health, which will fund research to increase our
understanding of the causes, impacts, and possible treatments of alopecia.
I know that our work is far from over, and I will continue to fight. I
will take my seat at the table. I will take up space. And I will create
it, too. And with this space, we will make change. Every single person
deserves to show up in the world exactly as they are, without fear of
discrimination.
To my fellow Alopecians — wherever you may be — I say that we belong, our
stories deserve to be heard, and we are absolutely beautiful and worthy.
In solidarity,
Ayanna Pressley
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