Part 1: The Emotional and Physical Toll of Severe Alopecia Areata

In this powerful roundtable discussion, dermatologists Dr Brittany Craiglow, Dr Brett King, and Dr Maryanne Senna explore the deep psychological and physical impact of severe alopecia areata. Through patient stories and clinical insights, the panel highlights the often-overlooked burden of hair loss, including its effects on identity, mental health, daily function, and social interactions. The conversation also addresses the stigma and dismissal patients face, even from medical professionals, and calls for greater empathy and recognition of alopecia areata as a serious autoimmune condition—not a cosmetic concern.

Brittany Craiglow, MD, is an associate professor adjunct - dermatology at Yale School of Medicine.

Brett King, MD, PHD, is a board-certified dermatologist specializing in hair loss disorders, vitiligo, and atopic dermatitis (eczema) in Connecticut.

Maryanne Makredes Senna, MD, is a board-certified dermatologist at Beth Israel Lahey Health, and assistant professor of dermatology at Harvard Medical School.

Key Clinical Takeaways

• Profound Psychosocial Impact: Severe alopecia areata (AA) results in visible, often abrupt, hair loss—including scalp, eyebrow, eyelash, and body hair—which causes intense psychological trauma, especially among children, adolescents, and young adults. Patients commonly report anxiety, depression, social withdrawal, and loss of identity.
• Universal Misunderstanding and Minimization: Patients frequently hear dismissive remarks such as “it’s just hair” from friends, family, and even healthcare providers. These comments undermine their experience, leading many to hide the emotional toll or downplay their distress, even during clinical visits.
• Healthcare System Gaps: AA is often mischaracterized as cosmetic rather than autoimmune, contributing to challenges with insurance coverage and access to care. Misconceptions arise from its visual nature and confusion with other forms of alopecia like androgenetic alopecia.
• Unique Clinical Burden: Unlike other dermatologic diseases, AA is visible, stigmatizing, and difficult to conceal, compounding its impact. Patients report traumatic public interactions—being mistaken for having cancer, being approached with unsolicited sympathy, or being bullied—regardless of coping mechanisms or camouflage attempts.
• Functional and Physical Consequences: Hair serves critical physiological functions—protection against environmental elements, filtration, and thermoregulation. Loss of eyebrows, eyelashes, and nasal hair can result in eye irritation, sweat exposure, and inhalation of irritants, particularly problematic for patients in physical occupations.
• Effective Clinical Communication Strategies:
  • Always validate the patient's experience, regardless of outward appearance or initial statements like “I’m fine.”
  • Use layered questioning (e.g., “How has your hair loss affected you?” followed by “Has this influenced your life decisions?”) to reach authentic responses.
  • Recognize that patients may appear well-adjusted but still harbor a strong, daily desire for hair restoration.
• Normalization vs. Enhancement: Restoring hair in AA patients is not cosmetic enhancement but medical restoration of normal appearance and function, aligning with treatment goals across dermatologic conditions like acne, psoriasis, and vitiligo.
• Call for Empathy and Awareness: Dermatologists must counter prevailing myths and adopt a trauma-informed, empathetic approach. Acknowledge AA as a chronic autoimmune disease with substantial psychological and physical ramifications, necessitating comprehensive patient support and advocacy.
• Cultural and Evolutionary Dimensions: Societal associations of hair with health, vitality, and identity reinforce the stigma of hair loss. Media portrayals and innate biases further exacerbate feelings of abnormality and vulnerability among patients.

Transcript:

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

Dr Senna: I'm Maryanne Senna. I am a dermatologist and the director of the Lahey Hair Loss Center of Excellence just outside of Boston in Burlington, Massachusetts. And 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 Yale School of Medicine, and now I'm in private practice with Brit who is my wife.

Dr Craiglow: So first we are going to talk a little bit about the emotional and physical toll of severe alopecia. And I think I am the first to admit before I started taking care of a lot of patients with AA, I really didn't get it. I think it's sort of hard to understand until you put yourself in a patient's shoes and really spent a lot of time talking and listening. But I think all of us probably agree the experience of this disease is really unique. It's difficult in a way that I think most things we see really aren't, and patients have this huge impact on their quality of life, and I think the experience of losing hair is traumatic. And so maybe Maryanne, do you want to just start off by talking about some of the things patients tell you about or that you think about and when treating this group of patients?

Dr Senna: Yeah, I mean, I think probably the most profound encounters I have with patients are those, especially kids and adolescents or even young adults when they've gone nearly overnight from having a full head of hair and eyebrows and eyelashes to just losing it all. And you just see this dramatic change in their ability to cope with that want to take part in the things that they always love to do. And it has such a different impact, I think, than any other conditions that we treat in dermatology. I think both because of the acuteness of it, but also because of just how visible it is and how hard it can be to camouflage. And so it's no wonder that we see higher rates of depression and anxiety in this group of people, but even in older people or people who have more chronic sort of disease over many years, it just impacts every aspect of their lives, whether it's their relationships or their types of jobs that they might get or how they feel about themselves every day or how they're treated by, I have patients tell, I'm sure you have this all the time too, when they have severe alopecia, they're out and about in the grocery store and people are coming up to them sharing their cancer stories and they're like, I don't have cancer. And that almost gives another sense of a burden to them where they almost feel bad because they don't have that, but they're being treated like they have that. So there's so much that goes into it that I think when we talk to patients all the time, we hear these different examples. And to your point, it's very different than other conditions that we treat, like I said.

Dr Craiglow: Yeah, this sort of idea of feeling bad that you feel bad, I think it's a common experience because not only do they have these experiences where people think that they're sick or their child is sick, but then I think also patients often hear, oh, well, at least you're not sick. Oh, well, at least. Or it could, it's just

Dr Senna: Your hair.

Dr Craiglow: It's so beautiful. Or it's just hair and these things that really kind of dismiss the experience. And I think that's pretty much a universal experience among our patients to be told those things, not only by friends and family or strangers, but also by healthcare providers. Brett, do patients talk to you about having had that experience with other dermatologists or other physicians when they come and see you?

Dr King: For sure. I think just to echo some of the things that you've said, this is psychologically traumatic and I think it's something that we recognize it in our interactions with patients when they come to see us in those first couple of visits when they may or may not be making progress. We especially recognize it when normalcy has been restored, when they have their hair back and it's the child or the teenager who all of a sudden isn't staring at the floor during the entire visit there, they're not wearing a hat. They're smiling, they're engaging with us, they answer our questions instead of their parents answering our questions And this is, I think, also true for adults. It comes across differently. Again, it's one of these things where I think when we are going through something difficult, it's human nature to want to downplay it, but when we're on the other side of that bad experience, we are willing to acknowledge how awful it was or how awful it is. And there is another part of this, which is that patients can be taken back to that very dark place of no hair in an instant. They start taking medicine that is effective, they regrow their hair, and six months, two years later, they develop three spots just randomly, not because medicine's not working anymore. We know that it's not because medicine's not working, it's just they developed a spot. But for them, some of these patients will immediately spiral and they go back to two years or three years before because there are certain, oh geez, this was just a dream. And I'm about to go back to the nightmare that I was living before all of this. So it really is a certain kind of psychological trauma and is really significant. And I agree completely. So unlike everything else that we do in dermatology.

Dr Craiglow: Yeah, I think that downplaying, I think it's one, probably partly a coping mechanism, but I think also there's this concern about being judged, especially if you've been told by other people, oh, at least it's just hair or at least you're not sick, et cetera. So I had a patient not very long ago come to see me. He was about, I think he's maybe 22 years old. I knew that he was having a very hard time because his physician had reached out to me and said, could you see him? He's really a mess. And I walked in the room and I often just start to say, Hey, how are you doing? And he says, oh, I'm okay. I've just kind of accepted it by now. And I think it would be really easy to say, oh, wow. And think, wow, imagine that. He's like, he's moving on and he's coping. And I think the problem is that that's just a guard up. I said, really? This is really hard. Most people aren't able to sort of move on that this is so dramatically life altering. And then through the course of the visit, it comes out that he's terrified to leave his apartment. He doesn't want to go to work. He's not interacting with friends. I mean, this had this huge impact on his day to day, but this, it's hard to kind of admit that if you don't know that the person you're talking to kind of gets it. Right. And so I think that's a really something that's very important for us as doctors to be able to convey, Hey, we're on your team. You don't have to put up a front for us. We get that this is a big deal. And I think perhaps this is part of why maybe people don't seem to understand as much what a big deal this is. I mean, Marianne, I don't know if you have thoughts about why we're still having to talk about this and reinforce it and telling insurance companies, et cetera, that this is not a cosmetic disease, but I think it's complicated and multifactorial. But why do you think we're still -- 

Dr Senna: I don't know. I mean, even women with breast cancer who lose their hair from chemotherapy, there's advocacy happening to ensure that they have wig coverage. I don't know what it is about hair that for some reason they separate it from any other part of the body. But at the end of the day, this is an autoimmune disease. And I think unfortunately, sometimes who aren't informed, think about it on a spectrum with mild androgenetic, hair thinning, androgenetic alopecia, it's completely different. This is a totally different thing. And I think it's just a lack of understanding and people being misinformed. And I think you either see a lot of these patients and see just how impactful this is, or you experience it yourself. And man, this is a tough thing for people to go through because you can't hide it. And even if people are figure out really great ways to camouflage it too, I'm just thinking of my patients this time of year, it's humid and hot and they're regrowing in some places, and then they're wearing a wig on top of that and how miserable it is. I mean, it's just miserable. They come in and see me in their visit and they're like, I can't wait to get home and just rip this thing off and I have to wear it. But they have to go about their business and do their job and be outside with their kids at the playground and whatever they have to do. And it's just either do that or you have to deal with all the questions and approaches that you don't want from people in the public. And I think all of these big and little things create such a burden for people who live with this condition

Dr Craiglow: Too mean so often we hear, oh, you could just wear a wig. Oh, it's fun. Have fun with it. You can play around with it. Oh, you could just wear a hat. I mean, even I see a lot of teenage boys, and if you wear a baseball cap, you can still see the back of your scalp.

Dr Senna: And are you going swimming? Are you going swimming with your hat on or your wig on?

Dr Craiglow: I mean, I have kids who wear a beanie in the summertime or they come in with their hood on. And again, this is not some failure of theirs. This is just the way it is. And yeah, I mean, there's kind of nothing like it. I often say, even if you say you were completely fine with it, which most people really want their hair back and are not, but say you were, the world still treats you differently. You still get glances that you wouldn't, you still get questions, you still get comments. Maybe you get bullied. You can't help how others respond to you. That's one thing we have no control over. And I also often say, just imagine you woke up this morning, all of us, we woke up this morning, we had to do the zoom call. If we woke up covered in psoriasis, we would probably still be here and feeling okay about it. If we woke up and we were missing our eyebrows and 50% of our scalp hair or even 10%, but it was right here, we might have sent an email this morning and said, sorry, I don't think I can join today. So kind of put yourself in that position and think about what it would mean for your life. So Brett, I think one of the most important parts of our job is to just validate that response, the experience of the patient. And I think it's hard sometimes because clinic visits are quick, and how do you figure out where patients are? How do you get beyond sometimes that shell so that we can actually see how people are really doing and feeling? Do you have an approach that you usually use or questions that you ask?

Dr King: Yeah, I think it really, and some of these things have been said already by YouTube, but it, it's asking, it's saying, how has this disorder, how has your hair loss affected you? And being willing, because 80% of the time, maybe 90% of the time, the answer's going to be, oh, I'm fine. Whether it's the 15-year-old or the 50-year-old, oh, I am used to it. Oh, it's okay. Oh, it's not a big deal. And then to say, oh, okay, that's great. Very often this is hard for people. And so that's okay if it is. Or very often when somebody's had it for as long as you have, they've had to make different life decisions or life decisions have been informed by their hair loss. And has that been the case for you? You have to be willing to ask more than one question because the first question is always that guarded, I'm okay. But often if you're willing to go another question or too deep, you'll get truth and you'll understand. And by the way, I think we often think that if we ask that next question, then all of a sudden the visit's going to be 30 minutes and we're going to need a box of tissues. It's not true. It's just giving patients the opportunity to sort of acknowledge something that they don't have many opportunities to acknowledge because they live in their head with it and they have to present to the outside world all the time that it's okay. But just giving them an opportunity to say, no, this sucks. And it makes me think of a patient that I'll never forget him, mid forties, handsome, no hair. No hair, handsome, a contractor looks like Hercules, like muscular, great looking guy, has a wife of 10 or 15 years, has kids. And I said, another way to get at it is, oh, oh, so you're fine. Well then what brings you in to see me today? Oh, you've had this for 10 years, or you've had this for 15 years, you said, you're fine. What can I do for you? And he said, not one day passes. Not one day has passed in my life to the present where I do not wish that I had my hair back. And he said, let's be clear. I'm okay. I really am okay. I'm successful. I make great money. I'm happily married. I have kids. Life is good, but don't believe that for one day that I would not wish to have my hair back. And that to me was really powerful, successful guy, good looking. Nobody looks at him and thinks he's got a problem. But for him, every day, every single day, he wishes to look like everybody around. Doesn't want to be better looking, doesn't want bigger lips, bigger cheeks, bigger muscles. He just wants to look like everybody else.

Dr Craiglow: Yeah. And this whole, it's cosmetic. Nobody is asking for their appearance to be enhanced. Like you said, cosmetic procedures enhance one's appearance. Right. Growing hair back is really just restoring normal. And if you think of most of the things that we treat in dermatology, skin diseases, what are we seeking to do? We're just seeking to restore normal. When we treat acne, when we treat psoriasis, when we treat granuloma, annular, vitiligo, you name it, that's what we're doing. We're trying to reverse disease and restore normal. And this is really no different from any of those things. And I think arguably hair is so much more sort of important in the way we view ourselves and the way other people view us culturally carries a lot of significance. And so this sort of historical dismissal of it is, it's curious. I do sometimes think that part of that was born from not really having reliably effective treatments. And so our job is to help people. And if we can't help people, that doesn't really feel very good. And so maybe we dismiss the experience and that doesn't feel quite as bad. Well, it's just hair. So it's not so bad that I can't help this person. And so hopefully now that we do have treatments that there will be sort of a paradigm shift, which I do think is happening. Before we move on, Marianne, any last thoughts about the patient experience or how you show empathy, et cetera?

Dr Senna: I mean, I think it's just important to realize the more we're talking about this in evolutionary biology, hair is a sign of health and fitness. So the visual difference that occurs when someone doesn't have hair is jarring, I think to people because they look as though they could be sick or there could be something wrong. And I think that mixed with the fact that our hair provides so much of our identity and what we look like, every time I ask a patient, can I see your license picture? And it's like, wow, there's a big difference between the patient who's sitting in front of, and that too is a really powerful experience for a person to go through. But I think we need to think about it more as some of these other medical issues or other things that people might go through where there's a strong visual difference in addition to the fact that it's an autoimmune disease that causes so much. And then I'll just end with one last thing, which is I also had a guy two weeks ago who's in construction and he has to constantly layer everything up. He's got no nose here he is got no eyelashes, he is got stuff that goes in, he's breathing in and everything all the time. And so we have to also remember that there is a reason why we have hair in these places. There is actually a function to why we have hair, and that can really be an issue in some cases as well. But I think we covered probably the most important things.

Dr Craiglow: Yeah, it's a good point though. We do talk about sort of the emotional experience of it. But yeah, hair is evolutionarily conserved for many reasons. But one is function, right? It protected, keeps heat in. It protects our scalp from sunburn. Nose hair helps keep particles from coming into and irritating our nose. Ask anybody who's missing eyebrows or eyelashes and they'll tell you, they go to the gym sweats getting in their eyes constantly in the shower. These hair is in all these places for a reason. And I think that kind of going back to what you said about that jarring experience or somebody looking sick, I think this is also reflected in popular culture. So if you look at movie villains, many of them are missing hair, including eyebrows and eyelashes. What do we think of when we see a child who has no hair? We think of cancer. So we grow up with these images also of baldness sort of being evil or being sick. And I think those are kind, ingrained and probably sort of imprinted really in the human experience. So lots to talk about. We could probably talk about this for an entire hour, but we will finish there.