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For Eczema Awareness Month, Keira Barr, MD, explains the stress-itch cycle in atopic dermatitis and questions to uncover its hidden burden in clinic.
October marks Eczema Awareness Month, a timely prompt for dermatology clinicians to weigh the full burden of atopic dermatitis alongside lesion clearance and itch scores.
Among 1519 US adults surveyed across 6 academic medical centers, 830 (54.6%) had moderate to severe disease.¹ This group reported itch on a mean of 5.7 days per week, compared with 2.7 days per week among patients with mild disease. The same analysis, published in JAMA Dermatology, found symptoms of anxiety or depression in 50.2% (417/830) of patients with moderate to severe disease vs 27.3% (188/689) with mild disease (P < .001).
Patients with moderate to severe disease also reported more nights of disturbed sleep per week (2.6 vs 0.4) and greater use of over-the-counter sleep aids (39% vs 21%).¹ Inadequate disease control, even among patients receiving systemic immunomodulators or phototherapy, carried a heavier itch, pain, and sleep burden.
In a separate population-based study of US adults with atopic dermatitis, itch ranked as the most burdensome symptom, cited by 54.4% of participants.² Taken together, these data describe a disease whose impact on sleep, mood, and daily function extends well beyond what clearance metrics capture.
Keira Barr, MD, founder of the Center for Mind Skin Medicine, brings a dual board-certified perspective in dermatology and dermatopathology to the interplay among the nervous system, immune system, and skin. In the following Q&A interview summary, Barr discusses the bidirectional relationship between stress and atopic dermatitis, how patients quietly reorganize their lives around the disease, and questions to open conversations about emotional well-being:
Keira Barr, MD: I’ll backtrack for just a second, because I think part of the challenge starts with the way we define stress. When we hear “psychological stress,” we’re often thinking of someone feeling anxious, overwhelmed, or under pressure, and that is an important part of the experience. But the nervous system is responding to much more than our conscious thoughts and emotions. It’s constantly receiving information from inside our body, like itch, pain, fatigue, hunger, and disrupted sleep, which is common in eczema. It’s also receiving information from our surroundings, like ambient temperature, light, sound, allergens, products, or even how a fabric feels against the skin. And it’s responding to what happens between us and other people, including relationships, caregiving, expectations, work demands, and the experience of living with a visible condition. Our current experiences are also interpreted in light of everything we’ve lived through before.
Take all that together, and the body is continually assessing what demands attention, protection, and recovery, often before we’ve even put words to it. That really matters in a condition like atopic dermatitis, which is a chronic immune-mediated inflammatory disease. The skin, the nervous system, and the immune system are in constant communication, and stress-related signaling can influence inflammation, the skin barrier, and itch. Then the itch, the pain, the disrupted sleep, and the anticipation of another flare can become additional stressors the body is now responding to. So now we have this cycle that’s reinforcing itself: that bidirectional communication.
When I’m talking about the mind-skin connection, I’m really inviting us to widen the lens. We’re not telling patients they’re causing their disease, that this is their fault, or that they need to be better at managing their emotions. We’re expanding it to recognize the full load their system is navigating alongside treating the underlying inflammation. That gives us so many more opportunities to reduce that load and support their capacity to adapt to it. We are wired to adapt to stress, but if the load is too much and we don’t have the resources to support it, it can overwhelm our capacity to do so.
Keira Barr, MD: Unfortunately, I think we underestimate a lot of it. After having conversations with so many people, I think we really underestimate how much people organize their lives around the disease, and they often do so so gradually and quietly that they stop thinking to tell us about it. The numbers give us a sense of that burden. Among adults with moderate to severe atopic dermatitis, 86% report daily itch. Half of patients with moderate to severe disease say it significantly limits their lifestyle. But those numbers become much more meaningful when we think about what it actually looks like to live that way.
If it’s okay, I’ll share an experience I had with a young man. He was in a demanding PhD program. His atopic dermatitis was causing so much discomfort and sleep disruption that he quietly stopped attending some of his classes. He just couldn’t face the thought of getting dressed and sitting in class while he was uncomfortable. So what happens? He starts falling behind on his assignments. He’s worrying about deadlines. He’s feeling increasingly overwhelmed, and his skin disease is affecting his education. Those consequences had now become additional stressors.
He was receiving appropriate medical treatment, so my role was to help him explore what else might help him feel more supported while he lived with the condition. This is when we start looking at the load that maybe goes unnamed. We looked at the sensory experience of his daily routines, including the way he applied his topical treatments. Instead of rushing through an application, we experimented with slower, more intentional contact: sometimes more gentle, sometimes with comfortable, steadier pressure, because sometimes gentle pressure doesn’t feel good. It all depended on what his skin could tolerate, so we were adjusting in real time.
We also looked at bedding and other aspects of his sleep environment. He felt restless before bed, which so many people with chronic skin conditions like eczema do. They’re feeling anxious, pent up, and worried; they’ve been trying to manage their skin all day. The system has a lot of energy, and it’s going to be hard to settle down. So one of the things we do is try some gentle movement, invite a pause, and then try to bring a little more regulation and ease into the system with breathing practices. There are lots of different breathing practices. Those changes made a significant and meaningful difference not only in how he experienced living with his condition, but his skin started to settle down as well.
I think it really illustrates the part of the disease burden we can easily miss: the subtle and sometimes big ways patients are adapting and trying to function on the surface while giving up pretty significant parts of their lives.
Keira Barr, MD: I have so much respect for my colleagues and how much they need to accomplish in such a short visit, and I don’t think every appointment has to become a lengthy conversation about emotional health. Sometimes just one question can open the door. A question like, “What has become harder because of your skin?” or “Is there something you’ve stopped doing that you wish you could get back to?” Sleep is a great place to start, too. Just asking, “How have you been sleeping?”
Those questions can give us information about the actual load the person is carrying, and they’re often more useful than simply asking, “Are you stressed?” Someone might say, “No, I’m fine,” because a patient may not label the itching, the sleeplessness, or daily workarounds as stress. They’ve adapted to them. It’s just the way things are. So when someone says they’re fine, I’ll sometimes ask, “What does fine require of you right now? What is being fine costing you?” Someone can be managing to get through the day and still be deeply uncomfortable: “Yeah, I’m fine. I’m pushing through.”
I think the way we ask matters as much as the words. We want patients to feel invited to tell us what’s happening, rather than feeling we’re suggesting they’ve somehow failed at coping or at their treatment plan. This is where tools can be helpful, because sometimes it takes a long time to get in to see the doctor, and by the time patients get there, some of their symptoms may have subsided and they forget the distress they were experiencing. EczemaHQ.com has some good resources, including a discussion guide, that can help people think through the ways atopic dermatitis is affecting their lives so they can bring more of that picture into the room. Then the physician can get a fuller picture of what they’re experiencing and support them, even if they’re not the one to offer that support, by figuring out who else might need to be part of the care team. A dermatologist doesn’t have to address every aspect alone to make a meaningful difference for a patient.
Keira Barr, MD: You’re right, there are so many. But I’d love for us to ask about the patient’s life as consistently as we ask about their skin symptoms, so we can expand what we mean when we talk about stress. The person sitting in front of us has a nervous system responding to the sensations of the disease, the environments they’re moving through, and the experiences and relationships around them, all of which the brain has to filter. Because of the intimate connection between our nervous system, immune system, and skin, it all can have an impact on our physiology as well as our psychology. So a question about sleep could be really helpful, and asking what they may have stopped doing can tell us a great deal about that experience.
What I don’t want is for patients to feel they have to organize their entire lives around uncontrolled atopic derm, or quietly settle for “good enough.” I want them to receive effective medical treatment, and there are a lot of great ones out there now. But what we see on the skin surface doesn’t tell us the full picture of the lived experience of the condition. The skin might improve, but the burden can still exist, and we want to make sure patients have the support to feel more comfortable participating in their lives.
That’s really the message behind the Unfiltered series I’ve partnered on with AbbVie: encouraging people living with atopic dermatitis to share the full picture with their dermatologist, including the things that may be harder to see or describe. That’s where eczemaHQ.com can offer resources to help with those conversations.
I’ll end with this: ultimately, I want us to be curious not only about how the skin is responding to treatment, but also about what the patient is able to get back to doing to feel more alive and, I know it sounds cliché, to thrive living with their condition. There isn’t necessarily a cure, and there are going to be ups and downs, and it can feel so isolating and so frustrating. So how can we support them to live their lives alongside their condition?
Editor’s Note: This transcript has been edited for grammar and clarity using artificial intelligence tools. Barr had no relevant financial disclosures of note.
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