If you’ve ever left a dermatologist’s office feeling more discouraged than hopeful, you aren’t alone. About 1 in 4 adults with atopic dermatitis were dissatisfied with their current treatment, according to one study.
What’s more, atopic dermatitis can increase your risk of anxiety and depression, which is why it’s important to tell your doctor exactly what is (and isn’t) helping your skin.
Advocating for yourself doesn’t have to be intimidating — you are your own best advocate. Here’s how to clearly communicate your thoughts, needs, and concerns to your dermatologist:
1. First, Do Some Background Research
The more you know about atopic dermatitis, the more confident you’ll feel about voicing your opinions. Already tried topical creams but saw little relief? There’s no harm in asking about a newer or stronger medication on the market.
Make sure you’re researching the subject using reputable sources of medical information. Here are a few organizations to get started:
Keep in mind that atopic dermatitis can appear differently depending on skin color, and treatment may even need to be altered for this reason. For example, people of color may need to carefully consider whether they want to use high-potency topical steroids, which can cause treated areas of skin to lighten.
Check out the website Eczema in Skin of Color, from the ACAAI and AAN, for more information about how atopic dermatitis can affect your skin.
2. Find a Dermatologist You Trust
When you’re managing a chronic condition like atopic dermatitis, it’s important to find a dermatologist who listens to you and values your input. You need to be comfortable talking openly about how well your treatment plan is working — including speaking up if you’re not satisfied with the results. If you have darker skin, you need to find a doctor who understands how the condition may affect you differently.
The right doctor will do more than just write you a prescription. They should also help you:
Navigate health insurance obstacles, such as step therapy, where you are required to try and fail traditional treatments before your insurer grants coverage of newer atopic dermatitis treatments.
Find and help you enroll in clinical trials, if you’re interested.
Help you identify whether your condition may be taking a toll on your mental health and, if needed, refer you to a practitioner who can help.
Looking for a doctor? Use the NEA Provider Finder to locate a specialist near you.
3. Seek Emotional Support
Living with atopic dermatitis can increase your risk of both anxiety and depression, one meta-analysis and review of 20 studies found.
The stress of mood disorders can exacerbate your atopic dermatitis, causing a vicious cycle, says Mohammad Jafferany, MD, a professor of psychodermatology at the Central Michigan University College of Medicine in Mount Pleasant and president of the Association for Psychoneurocutaneous Medicine of North America.
If your condition is taking a toll on your mental health, ask your doctor for a referral to a therapist. Specialized practitioners like psychodermatologists, who focus on therapy for people with skin conditions, or chronic illness therapists can help.
4. Take the Lead in Your Care
You are the most important person on your healthcare team — don’t feel guilty about speaking up. “Take control of your eczema journey,” advises Helen Piña, who has been living with chronic atopic dermatitis most of her life and writes about it on her blog, Itchy Pineapple.
Prepare in advance for each doctor’s appointment. Take notes on what you hope to accomplish with each visit — whether it’s asking questions, troubleshooting challenges, or discussing a new treatment you may want to try. Making a plan enables you to go into each checkup with confidence.
5. Speak Up for Yourself at Work
The Americans with Disabilities Act (ADA) protects you against discrimination in the workplace and ensures equal opportunity for people managing chronic health conditions, including atopic dermatitis. It also ensures access to workplace accommodations that enable you to do your job.
It may feel scary to share personal health information with your employer, but the law requires you share only what’s necessary to document your needs when requesting reasonable accommodations. For example, you can ask the health provider providing documentation to specify only the details needed to support the discussion (this may mean explaining your needs rather than specifying a diagnosis).
And remember that you’re not required to volunteer health information at all if you’re not asking for accommodations. But some people find that opening up about their diagnosis can go a long way.
If you’re comfortable doing so, educating your coworkers about atopic dermatitis can help them understand that your skin symptoms aren’t contagious, and you can explain the impact the condition has on you, says Dr. Jafferany.
“Most people don’t realize the extent of its effect on people who have a severe case. They view it as an inconvenience, a bit of itchy skin behind your knees or elbows,” says Hannah Kunzlik, a trustee of the UK’s National Eczema Society who’s had atopic dermatitis most of her life.
Requesting workplace accommodations can help you navigate obstacles that make it difficult to do your job. “Working in an environment where it is too hot or too cold could exacerbate atopic dermatitis lesions,” Jafferany says. Changes in humidity may also be an issue, he says. Through the reasonable accommodations process under the ADA, your employer may agree to provide a space heater or a personal fan to keep at your desk and use as needed. Or you might discuss an accommodation that allows you to work from home during a bad flare.
The ADA (and similar laws in other countries) is a civil rights law that can empower you. “It had never occurred to me that I would be covered by this [type of] law,” says Kunzlik. “It gave me a lot more confidence going into [workplace] conversations.”
If you need accommodations for your condition, reach out to your manager or HR to start the conversation.
6. Connect With Others Who ‘Get It’
Many people who have atopic dermatitis are hesitant to talk about the condition, but connecting with others who understand what you’re going through can help you feel less alone, says Jafferany.
“The one thing you hide is usually the one thing connecting you to others,” says Katie Mackie, who lives near London and shares her journey with atopic dermatitis on her Instagram accounts @mackies_moments and @itch_n_bitch. “My [Instagram] accounts have taught me the real meaning of community. And, most importantly, they have taught me that if you surround yourself with people who get it, you’ll never feel alone again.”
Don’t underestimate the impact sharing can have. “Being able to connect with others who have a similar experience has been life-changing,” says Kunzlik. “Just the fact that I don’t need to constantly explain myself — that I don’t have to tell people how it affects me and why I may need to change plans or suddenly disappear — makes a difference.”
Ask your doctor about local support groups. You can also search online for atopic dermatitis Facebook groups, Instagram accounts, or Reddit communities called subreddits, where you can share your thoughts publicly or remain anonymous, says Piña. “The eczema community is active, inviting, and helpful,” she says.
“This is an incredibly common condition, and there are millions of people out there going through the same thing as you — people you can connect with, advocate with and for, and be supported by,” Kunzlik says. “You aren’t alone. We aren’t alone.”
The Takeaway
Many people with atopic dermatitis are dissatisfied with their current treatment, but because the condition can increase the risk for depression and anxiety, it can be hard for some to speak up.
Making an effort to educate yourself about your condition, finding the right dermatologist, and advocating for the care you need can help increase the chances your illness will be well controlled.
Asking for reasonable accommodations at work to help you do your job effectively and connecting with other people who live with atopic dermatitis can also help you feel empowered and remind you that you’re part of a community.
EDITORIAL SOURCES
Everyday Health follows strict sourcing guidelines to ensure the accuracy of its content, outlined in our editorial policy. We use only trustworthy sources, including peer-reviewed studies, board-certified medical experts, patients with lived experience, and information from top institutions.
Resources
Anderson P et al. Inadequate Disease Control, Treatment Dissatisfaction, and Quality-of-Life Impairments Among US Patients Receiving Topical Therapy for Atopic Dermatitis. Dermatology and Therapy. July 15, 2021.
Blair Murphy-Rose, MD, is a board-certified dermatologist in New York City and the founder of Skincare Junkie. She is an accomplished cosmetic, medical, and surgical dermatologist, specializing in leading-edge facial rejuvenation techniques, including injectable fillers and botulinum toxin injections, advanced laser procedures, noninvasive body contouring, and removing lumps and bumps with precision. She is an expert in the treatment and detection of medical conditions, including skin cancer, acne, rosacea, eczema, and psoriasis. Dr. Rose believes in a comprehensive approach to skin health and incorporating a skin-care routine tailored specifically for each individual and utilizing a wide array of tools to target specific skin concerns.
Rose has been published in peer-reviewed journals, including the Journal of the American Academy of Dermatology, Dermatology Surgery, and Pediatric Dermatology, and has been featured in numerous publications, including Vogue, Elle, Allure, Cosmopolitan, Self, Women’s Health, The Wall Street Journal, and The New York Times.
Kerry Weiss is a New York–based freelance writer, editor, and content strategist specializing in health and wellness. She has contributed to a variety of online publications, including Healthline, WebMD, Sharecare, Twill Care, and What to Expect.
