You have two choices when managing atopic dermatitis (eczema). You can stay quiet and try to cope. Or you can use your voice and take control of your journey. Here’s why speaking up matters.
Know Your Facts
More than 30 million people in the U.S. have some form of eczema. About half (16 million) have a more severe kind called atopic dermatitis (AD). “Atopic” means allergies, and “dermatitis” means skin.
The word “eczema” is derived from the Greek word “ekzein,” meaning “to boil over.” It can feel like your symptoms, emotions, and costs are doing just that as you manage an often misunderstood condition.
You might have to brush up on the facts to speak up for yourself if you have atopic dermatitis, even if you’ve been living with the condition for years. When talking to others about atopic dermatitis, remember:
- It’s also known as eczema.
- It’s not contagious.
- It’s known to be genetic, sparked by something with the immune system or something in the environment.
- There’s no cure (yet).
- It’s not just a rash or dry skin.
- Adults can get it, too.
Dialogue With Doctors
Each doctor visit – whether with your primary doctor, dermatologist, or allergist – is a chance to share updates and ask questions. You’ll have routine appointments, but some are very important. Be extra prepared for your first visit (after diagnosis), visits when your treatment needs updating, or when you have new symptoms to discuss. Consider the three O’s when advocating for yourself with your doctor.
- Be organized. Come to doctor visits with notes on symptoms, questions about your treatment, or updates on changes to your health. Keep a notebook or use apps to keep track.
- Be open. Share changes in your symptoms, if treatments have stopped working, or if you have a new diagnosis. Don’t be embarrassed to share how eczema impacts your work life, relationships, or day-to-day activities.
- Be original. Eczema impacts everyone differently. Treatment success is also different for everyone. Talk to your doctor about how it affects you. Discuss your goals (get more sleep, be more active, etc.) when discussing treatments. Resist the urge to compare.
Having your answers ready for your doctor is just as important as noting your questions.
Your doctor may ask:
- What are your top symptoms?
- When did your symptoms start?
- When do you have your symptoms? (All the time? On and off?)
- How much of your body is covered?
- Does anything make symptoms better or worse?
- Do allergies run in your family?
- How much do symptoms impact your life?
A Note on Lived Experience
When it comes to living with eczema, it can be tempting to think doctors and scientists know more than you do.
However, what’s called “lived experience” (going through something yourself, living it) of having eczema gives you a leg up on what it’s like. A new field of medicine called narrative medicine honors your story as a patient. It encourages doctors to stay curious. It allows things like your family history, cultural factors, or other areas of your life to be just as important as lab tests and exams.
The Best Advocate Is You
Advocating for yourself is a seven-day-a-week gig when you live with eczema.
Here are some key times to speak up:
When you’re newly diagnosed
Understanding your condition won’t happen overnight. It may sound like a lot of complex information at first. Take your time and ask your doctor questions like:
- What is causing my symptoms?
- Are you sure I have eczema? What tests can confirm this?
- Will my eczema go away on its own?
- What medical treatments might help me?
- What can I do at home (on my own) to help?
When your treatment isn’t working
Finding a treatment (or combo of treatments) that works for you is often a game of trial and error. If you have more bad days than good, first become your own journalist. Write down when your symptoms happen, whether they’re getting worse or staying the same, and what things (type of food, whether you got a good night’s sleep, etc.) play a role in how you feel.
At your doctor visit, the prep you did will be key to helping them find a solution to your changing symptoms. Have a list of questions in mind, too.
- Why isn’t my treatment working? Your doctor may need to keep you on your current meds for a while, or they may opt to increase or decrease them to get more answers to why your treatment has stopped working.
- What are my options? Don’t assume that your first med will be your last. New treatments are approved all the time. Ask your doctor if there’s a new (or older) medication or cream you can try for your eczema.
- What’s next if this treatment fails? Your doctor may suggest another type of treatment – even a non-medicated option – if your treatments continue to fail. Ask lots of questions about the timeline for taking a different approach.
When your costs are mounting
We’ve all heard “no” from an insurance company at least once. Sometimes, getting a health need covered can feel like winning the lottery. Having a skin condition like eczema can double the challenge. One recent consumer poll showed that 72% of people avoid medical treatment because they don’t understand the health care system. Several respondents didn’t know basic insurance terms like copay or deductible.
Try these tips:
- Understand your insurance policy – what it covers, what it doesn’t, and the costs for various medical needs.
- Keep good notes. Jot down details of all phone calls,and keep a timeline.
- Work with your doctor. Ask for samples or ask them to contact your insurance company to discuss your treatment plan (also known as a peer-to-peer).
- Contact a health advocate. These are paid “helpers” who wade through insurance paperwork, help negotiate medical bills, or even attend doctor visits with you.
While most insurance companies cover eczema and treatments, the cost of having a chronic condition can add up! The National Eczema Association notes that the average person with atopic dermatitis spends about $600 per year, but that number can go up to $5,000.
Planning can go a long way in helping you manage costs. Expect to spend a few hundred dollars on annual visits to your dermatologists, plus extra visits if you’re having a flare. You’ll spend money on treatments like creams and moisturizers and other products and medications to manage your symptoms. Shop around for the best prices. Contact patient advocacy organizations for more resources whether you have insurance or not.
When family and friends don’t understand
No one will understand how your body and mind feel with eczema more than you. At times, family and friends may make comments that hurt or offer advice that isn’t helpful. Or they may make requests that are too much for where you are on your health journey with atopic dermatitis.
Try these tips when talking with those you love (and really, really like)
- Explain the itch cycle. Most people have been bitten by a mosquito or other bug and found that the more you itch, the more you scratch and the more your scratch. … Well, you get the picture. You know living with eczema is a lot like this. You want to stop scratching, but you can’t. Instead of sitting through another lecture about why you should “just stop scratching,” help friends and family understand how they can help. Ask them to bring you some gloves, a bottle of soothing lotion, or try distracting you with another topic or activity.
- Share that it’s more than skin deep. Eczema often comes with other conditions like asthma, allergies/hay fever, infections, depression, anxiety, sleep issues, and increased heart problems. Because eczema can mess with your sleep, you may be more fatigued than others. Bring your loved ones into your world by explaining that you may have to limit what you do – especially if you’re having a flare.
- Talk about life at home. Certain foods (like eggs, wheat, or soy) and household products (like soaps, cleaners, or fabrics) can trigger your eczema. Pet dander can be tough, too. Let family and friends know how they can help you avoid such triggers.
When school or work gets tough
Symptoms like itching, a hard time sleeping, or pain can make you less able to study or work. But there is hope. You have rights as a student or an employee with a chronic condition!
Speak up for yourself as a student (or parent/caregiver of a student) with eczema, and let your teachers, administrators (like principals and counselors), and other students know how they can help.
Request accommodations like access to hand-washing facilities, permission to apply medication during class, or adjustments to dress code restrictions that might worsen your eczema flares.
Talk to your school nurse about your treatment plan or what to do if you have a flare in class. If you’re a parent, make sure teachers and administrators are on watch for bullying.
In an office setting, eczema triggers are all around. Bring a sweater or dress in layers to manage temperature changes. Talk to your co-workers (or boss) about how perfumes or scented lotions impact your health. Bring your own soap, hand dryers, or cleansers if the office versions irritate your skin.
Lastly, certain fabrics may irritate your skin. If you wear a uniform, wear layers underneath to form a barrier. Look for fabrics that are kind to your skin, like cotton, bamboo, and silk. Check online for brands that are comfy but professional for work settings.
Educate yourself on disability rights and workplace or school accommodations under the Americans with Disabilities Act.
You are an expert on living with atopic dermatitis. Everyone from doctors and lawyers to professors, lawmakers, and managers needs the true story of what life is like – straight from the source.
Show Sources
Photo Credit: Image Source/Getty Images
SOURCES:
Allergy and Asthma Network: “Eczema (Atopic Dermatitis) Statistics.”
National Eczema Association: “Eczema Stats,” “Eczema Basics: What You Need to Know,” “Survey on out-of-pocket expenses for eczema,” “Eczema Advocacy and Legislative Efforts,” ”3 Advocacy Issues People with Eczema Should Know About,” “Do you have atopic dermatitis? It’s time to speak up!”
National Institutes of Health: “Atopic Dermatitis.”
Asthma and Allergy Foundation of America: “Webinar: Taking Charge of My Eczema.”
Association of American Medical Colleges: “Narrative Medicine: Every Patient Has a Story.”
Policy Genius: “Health Insurance Literacy Survey 2019: Americans are increasingly confused about health care.”
Alliance of Professional Health Advocates: “An Overview of the Profession of Health and Patient Advocacy.”
National Eczema Society: “Work and Eczema.”
Photo Credit: Image Source/Getty Images
