Shortly after her fourth birthday, my daughter Gwen lost every hair on her body, probably forever.
Before Gwen’s diagnosis, I’d never heard of alopecia areata. Fast forward through two years of parenting a child with the most extreme form – alopecia universalis – and it feels like I’m an expert. A scientist by training, I’ve read as many research articles on alopecia as I could find, studied autoimmune disorders, seen specialists (shout out to pediatric endocrinologists!), and evaluated our treatment options. In short, I’m a pretty well-informed parent.
But the challenges of alopecia aren’t limited to doctor’s appointments, medical decisions, and getting used to kissing a bald head instead of a hairy one. There are unexpected moments, usually when we least expect them when my husband and I find ourselves revising a so-called rule.
Here are five of those conundrums:
Feel proud of your bald head – but cover it up!
When we first came to terms with Gwen’s diagnosis and hair loss, we shared with her many pictures of women and men showing off their bald heads. Our message to Gwen was (and still is) that you are beautiful the way you are. You don’t need to wear a wig, scarf, or hat to hide your naturally hairless head. Be your fabulous self!
And yet I find myself constantly reminding her to put on a hat. There’s a reason humans have hair on top of our heads, and being bald leaves her susceptible to sunburns and heat loss. Despite our best efforts with sunscreen and swim hats, she has an adorable smattering of freckles across her scalp, which may herald future sun damage. And in the winter months, she struggles to keep warm as heat radiates off of her head.
Unfortunately, most hats are built to be worn over hair and they have scratchy seams inside or the sizing isn’t right. As a result, I’m in a constant quest for comfortable hats that appeal to Gwen’s dazzling fashion sense enough that she’ll keep one on!
Look people in the eye and speak up – but if you need privacy, that’s okay.
Gwen’s hairlessness attracts eyes. She’s a pretty girl who loves to wear pink dresses with sparkles. And she’s unapologetically bald. She gets stared at a lot. Often people share stories of those they’ve known with cancer, thinking they know what caused her hair loss.
Some days, Gwen revels in the attention and serves as a little alopecia advocate explaining the autoimmune disease and answering questions. But other days, she’s not in the mood for prying eyes and probing queries. She wants to be left alone. When people begin to compare her to a cancer patient they know, she tries hard to listen, and does an okay job, but she’s just a kid. She has little patience for long-winded memories of people she’ll never meet, especially during a trip to the zoo (true story).
We try to teach our children to interact appropriately with people of all ages. Look people in the eyes, answer questions clearly, try to talk with adults, but don’t monopolize the conversation. It’s hard to be brave and confident, but practice makes perfect. We expect them to practice those behaviors.
And yet, there are days when I acutely feel how much Gwen doesn’t want to be seen. She feels over-exposed: stared at and talked about too much. But it’s hard for her to disappear and be ignored. There are moments when I have to be the one to look people in the eye and speak up that Gwen needs space.
Don’t ask for special treatment – but let people be kind.
When people see a child with hair loss, they see a family facing difficulty. They associate it with illness, pain, and struggles. They want to ease the burden. They want to bring a smile. And they do wonderfully kind things, like giving her a free toy or candy, letting our family play a second round of mini golf at no extra charge, or letting us move up in a line.
My husband and I struggle with how to respond to generosity. In the first year, we sometimes felt defensive or even offended. We were both raised by fiercely independent parents who fought adversity in their own ways and were reluctant to accept anything from anyone. Learning to meet generosity with gratitude seems easy, but it takes conscious effort to let go of preconceived notions and accept these kind gestures in the spirit they are given.
There are so many people in genuine need and we are not. Gwen isn’t seriously ill and our family isn’t struggling. There are so many people battling invisible diseases and challenges that deserve the charity and generosity of strangers so much more. We try to politely refuse and explain, but sometimes people’s generosity is stronger than our desire to make a scene. So we thank them for their kindness. And we pay it forward in different ways. We have experienced some of the greatest magic and the purest love this world has to offer by opening ourselves to the generosity of others and, in turn, practicing that generosity toward others.
Accept gifts graciously – but don’t be spoiled!
Gwen is a charming, charismatic little girl. She’s hilarious, precocious and adorable. People were handing her free ice cream before the hair loss. And now? Even saying “no” to many gifts and opportunities, she still walks out of random interactions with strangers with a fresh sticker or a dollar in her pocket (yep, that happened!).
How do I keep her from being spoiled when the world wishes to spoil her? How do I teach her not to feel entitled? Someday she will be a gawky teenager with pimples, braces AND no hair – and the world may be a devastatingly cruel place that gives her nothing. Do I let her enjoy this while she can?
As in many families, her sister is our greatest weapon in the arsenal of combating entitlement. While Elle is nearly six years older, and fiercely protective of her sister, she doesn’t hesitate to put Gwen in her place with the usual sibling insults, squabbles, and kicks under the table.
You are different and special – but you’re just like everyone else!
This one is terribly important and has broad implications. Gwen has an obvious physical difference. She stands out in a crowd, and she knows it.
We read books, watch shows, and talk a lot about embracing differences in everyone we see. Gwen knows that she might look different, but she can do anything and be anything she wants. So far she wants to be an obstetrician, dancer, teacher, and a parent. We reassure her she can be all that and more.
Gwen is isolated as a bald child. While Gwen might see older men with hair loss, she doesn’t know any children with hair loss. She loves looking at photos of people with alopecia, but strangers only hold so much interest. We’d planned to attend at least one summer camp for alopecians, but the pandemic got in the way. I hope next summer we’ll be able to connect with other children and families in the same situation. Another parent told me to be ready to panic because on any playground or crowd, I can easily find my daughter, but in a crowd of alopecians she will blend in and I’ll lose her. I think we will both appreciate the experience of Gwen blending into a crowd, and knowing that her specialness is still there inside. She is more than her alopecia.
For now, I will continue my journey of parenting through these conundrums, and trying hard not to constantly contradict myself.
Photo: Scott Schwartzkopf