Part 1: Understanding the Emotional and Physical Toll of Alopecia Areata

In this Part 1 of a candid and powerful conversation, Dr Brittany Craiglow, Dr Brett King, and Dr Maryanne Senna share their clinical experiences treating patients with severe alopecia areata (AA). Far from being a cosmetic concern, AA is a traumatic, identity-altering disease that profoundly affects emotional health, social function, and quality of life.

This discussion goes beyond treatment to explore what it truly means to understand and validate the patient experience. The panel reflects on how dermatologists can better connect with their patients, dispel common misconceptions, and advocate for meaningful care. Their insights challenge the notion of alopecia as a minor condition and call for a more empathetic, informed approach in clinical dermatology.

Dr Craiglow: Hi everyone. My name is Dr Brit Craiglow. I am an adjunct associate professor of dermatology at Yale, and I’m really excited to be joined by Dr Brett King and Dr Maryanne Senna. I'll have each of them introduce themselves briefly.

Dr Senna: I'm Maryanne Senna. I’m a dermatologist and the director of the Lahey Hair Loss Center of Excellence just outside of Boston in Burlington, Massachusetts. I’m also an assistant professor of dermatology at Harvard Medical School.

Dr King: Hi everyone. My name is Brett King. Until recently, I was at the Yale School of Medicine, and now I’m in private practice with Brit, who is also my wife.

Dr Craiglow: So first, we’re going to talk a little bit about the emotional and physical toll of severe alopecia. I’ll be the first to admit that before I started caring for a lot of patients with AA, I really didn’t get it. It’s hard to truly understand until you put yourself in a patient’s shoes and spend time talking and listening. But I think we’d all agree that the experience of this disease is unique. It’s difficult in a way that most of the conditions we see are not. It has a huge impact on quality of life, and the experience of losing hair is traumatic.

Maryanne, do you want to start by talking about some of the things your patients share with you, or what you consider when treating this group?

Dr Senna: Yeah, I think probably the most profound encounters I’ve had are with kids, adolescents, or even young adults who have gone from having a full head of hair, eyebrows, and eyelashes to losing it all almost overnight. You see this dramatic change in their ability to cope and participate in activities they once loved. It hits differently than other dermatologic conditions—both because of how sudden it can be and how visible it is. It’s hard to camouflage.

So, it’s no surprise we see higher rates of depression and anxiety in this group. Even in older patients or those with a more chronic disease course, it affects everything—relationships, career opportunities, self-esteem, and how they’re treated by others. I’m sure you hear this all the time: patients tell us that strangers approach them in public, like at the grocery store, and share their cancer stories. And our patients are like, “I don’t have cancer.”

That adds another layer of burden—they feel guilty for not having cancer but still being treated like they do. So, there’s a lot that goes into it. As you said, this is very different from other dermatologic diseases.

Dr Craiglow: Yeah, that idea of “feeling bad for feeling bad” is common. Patients are often told, “At least you’re not sick,” or—

Dr Senna: “It’s just hair.”

Dr Craiglow: Right—“It’s just hair,” or “You’re still beautiful.” These comments really dismiss the patient’s experience, and I think almost every patient has heard them—from friends, family, strangers, and even healthcare providers.

Brett, do patients ever tell you they’ve had those experiences with other dermatologists or physicians?

Dr King: Absolutely. Just to echo what’s already been said—this is psychologically traumatic. We see it during those first visits, whether or not patients are making progress. But we really see it when normalcy returns. When their hair grows back and that child or teen stops staring at the floor, takes off their hat, smiles, engages—they answer questions instead of their parents doing it for them. It’s the same for adults—it just presents differently.

When we’re going through something hard, we tend to downplay it. But once we’re through it, we’re more willing to admit how bad it was. And patients can be brought right back to that dark place in an instant—they regrow their hair, then develop three random spots. Not because the medication stopped working, just because that happens. But for them, it’s like, “This was just a dream, and now I’m back in the nightmare.”

It’s a specific kind of psychological trauma and unlike anything else we see in dermatology.

Dr Craiglow: Yes, I think part of the downplaying is a coping mechanism, but also a fear of being judged—especially after hearing “it’s just hair” or “at least you’re not sick.” I had a 22-year-old patient referred to me by his doctor, who said he was really struggling. When I walked into the room and asked how he was doing, he said, “I’m okay. I’ve just kind of accepted it.”

It would be easy to take that at face value. But I said, “Really? This is hard. Most people can’t just move on—it’s dramatically life-altering.” And then it came out: he was terrified to leave his apartment, didn’t want to go to work, wasn’t socializing. But if patients don’t know we understand, they won’t open up.

It’s important for us as physicians to show that we get it—they don’t have to put up a front. And maybe that’s why so many people, even insurance companies, still don’t understand that this isn’t a cosmetic disease. Marianne, any thoughts on that?

Dr Senna: Even women with breast cancer who lose their hair from chemo—there’s advocacy for wig coverage. But with alopecia, people separate hair from the rest of the body. This is an autoimmune disease. Unfortunately, many people conflate it with mild androgenetic alopecia—which is completely different.

Either you see a lot of these patients or experience it yourself to understand how hard this is. You can’t hide it. Even patients who find good ways to camouflage it suffer. Think about summer: it’s humid, they’re regrowing in spots, wearing a wig—it’s miserable.

I have patients who come in and say, “I can’t wait to rip this thing off.” But they still have to do their jobs, be out with their kids, go to the grocery store. The alternative is dealing with constant questions and stares.

All those big and small things add up—it’s a massive burden.

Dr Craiglow: We so often hear, “Oh, just wear a wig,” or “Have fun with it!” But it’s not that simple. I see teenage boys who wear beanies in summer or keep their hood up—and it’s not a failure, it’s just reality.

Even if someone says they’re fine—and most people really do want their hair back—the world still treats them differently. They get looks, questions, comments. You can’t control how people respond.

I tell people: imagine waking up this morning missing your eyebrows and half your scalp hair. Would you still join this Zoom call? But if we woke up with psoriasis, we probably would. That’s the difference.

Brett, one of our most important jobs is to validate that experience. How do you get past the surface and really understand how your patients are doing?

Dr King: It starts with asking, “How has your hair loss affected you?” But you have to be prepared for the standard response: “I’m fine.” That’s true whether they’re 15 or 50. So I follow up: “That’s okay if it’s hard. For a lot of people, it is.”

Or I say, “Many people who’ve had this as long as you have had to make different life decisions. Has that been the case for you?”

The first answer is guarded, but if you’re willing to ask a second or third question, you’ll often get to the truth. And it doesn’t take 30 minutes or a box of tissues. You’re giving patients a rare opportunity to say, “This sucks.”

I’ll never forget one patient—mid-40s, handsome, built like Hercules, successful contractor. I asked, “You’ve had this for 10 or 15 years and say you’re fine—so what brings you in?” And he said, “Not one day has passed where I don’t wish I had my hair back.”

He added, “Let’s be clear—I’m okay. I’m successful, I’m happy, life is good. But don’t think I wouldn’t take my hair back in a heartbeat.”

That really stuck with me. He didn’t want to be better-looking or younger—he just wanted to look like everyone else.

Dr Craiglow: Yes, and that’s the thing—it’s not cosmetic. Cosmetic procedures enhance appearance. Regrowing hair is about restoring normal.

In dermatology, our goal is to reverse disease and restore normal—whether it’s acne, psoriasis, vitiligo, or this. But hair carries unique cultural weight, and the historical dismissal of it is curious.

Maybe part of it was not having reliable treatments. If we couldn’t help, it felt better to downplay it. “It’s just hair.” But now that we can help, I hope we’re seeing a paradigm shift—which I think we are.

Marianne, any final thoughts on empathy or the patient experience?

Dr Senna: Just that in evolutionary biology, hair is a sign of health and fitness. The absence of hair creates a jarring visual—it can signal illness, even if it’s not the case.

And hair is so tied to identity. I always ask to see a patient’s license photo—it’s powerful. The contrast between then and now is huge.

And don’t forget the function of hair. I had a construction worker in last week—no nose hair, no eyelashes. He’s constantly exposed to dust and debris. Hair protects us.

So yes, there’s an emotional toll, but also physical consequences. We often overlook that.

Dr Craiglow: Absolutely. Hair is there for a reason—it keeps in heat, blocks UV, filters particles. Missing eyelashes and eyebrows? Sweat and shampoo stings in the eyes.

And the visual impact matters. In pop culture, villains are often bald. When we see a child with no hair, we think “cancer.”

These messages are ingrained in us. There’s so much more to discuss—but we’ll stop there for now.