If you’re living with severe atopic dermatitis (AD), you know it’s more than just itchy, dry skin.
For starters, the symptoms are constant, distracting, and frustrating. Treatment helps with those, of course, but it isn’t always simple. Medications that go on your skin may have to be applied in a very specific way and then followed with wet wraps. Other treatments, such as phototherapy, require you to visit a clinic 2-3 times a week for several weeks. Systemic medications, like pills or injections, can cause side effects that are hard to deal with.
“Living with severe atopic dermatitis, especially when it covers a large portion of the body's surface area, is just a lot of work,” says Thomas Stringer, MD, dermatologist with MedStar Health in Washington, DC.
But not only do your physical symptoms need constant tending, but the condition impacts your quality of life – mentally, emotionally, and financially, too.
Common Challenges of Severe Atopic Dermatitis
Severe AD may show up in different ways on different bodies, but it can cause many of the same problems for everyone. Here’s what you might be going through.
Fear of unknown triggers. While you may have a general understanding of what makes your AD worse, there’s always the possibility of a trigger you haven’t discovered yet. Some people may live with some degree of fear of coming into contact with that unknown trigger.
“It's very common for people who are taking great pains to use fragrance-free, gentle skin products to come in and say, ‘I can't figure out for the life of me why my eczema is out of control—I haven't changed anything!’” says Stringer.
Unlike seasonal changes, some triggers cause a delayed reaction, so it’s not always obvious what set off your symptoms.
“If someone has a contact allergy to metals or fragrances, they only need to be exposed once every few weeks to remain sensitized to it and for the reaction to keep going,” he says. “It may not be a reaction that happens instantly.”
Financial frustrations. When AD covers a large part of your body, you need more topical medications to treat it. Many of the higher-potency steroids come in small tubes, which means you have to buy even more, says Stringer.
“Let's say over 30% to 40% of your body surface area is affected,” says Stringer. “Only a couple of different types or potency of steroids will be stocked in sufficient quantity for it.”
People with AD have more outpatient, urgent care, ER, and hospital visits than people who don’t have the condition, all of which come with a bill.
Along with these direct costs, there are indirect costs, too. According to the National Eczema Foundation, adults with AD take 11 days off of work per year, on average, for their disease.
Negative mental health impact. Studies show that people who live with severe AD have poorer mental health than the general population. Severe AD raises your risk for depression and anxiety.
One-third to one-half of adults with AD avoid social interactions because of their appearance. The way your skin looks and feels may cause problems with your relationships, especially sexual relationships. Pain or unbearable itching may keep you up at night and affect relationships with partners. Insecurity about your appearance can make intimacy a challenge.
Skin infections. The itch-scratch cycle caused by AD damages your skin barrier. This barrier is crucial for protecting your skin against germs.
“If you have severe enough eczema, you have a very high predisposition to infections in part because the nature of atopic dermatitis is that the skin isn't producing a lot of the sort of defensive proteins that are typically found there to guard against infections like that.”
If an infection spreads, it can be very dangerous, especially if you have a compromised immune system, for example, from immune-suppressing medications you take for your dermatitis.
Improve Your Treatment Plan
Step one for getting the best AD care is to take stock of how you’re currently treating your skin.
Addressing your symptoms adequately is going to involve looking at all of your daily habits,” says Stringer. “Take note of things like frequency, temperature, and length of your showers, which bath soaps you’re using, what exposures you might have at work.”
Alongside that, there are other ways to step up your AD management game.
Zero in on your goals. Have an open and honest conversation with your doctor about the hardships you face because of your AD and what you hope to change.
“The first thing I often ask patients when they tell me that the treatment isn't working is what they mean by ‘not working,’” says Stringer. “Atopic dermatitis is a chronic condition that will always be there in some way, shape or form, and so if I discover that steroids are clearing their atopic dermatitis for a few weeks but then it’s coming back, that's a very different report than someone who tells me they put on steroids and absolutely nothing happens.”
When your doctor has a clearer picture of your expectations and goals, they can better tailor your plan to your unique disease course and make it a more livable condition.
Keep a symptom diary. To pinpoint your less obvious triggers, keep a written record of your symptoms. Along with the type and severity of any flares, track other details such as:
- Your location that day
- The weather
- Foods you ate
- Products you used on your skin
- Possible stressors
The key is to keep it going so you have data over many months, or even years. With a long-term symptom diary, you can look for patterns that reveal triggers you didn’t see before.
Stay connected. For many people, support groups are a source of connection and comfort. When you get to know other people who live with severe AD, you may feel less alone. You can also gain firsthand advice from people who understand the treatment and impact of your disease.
If group settings aren’t your preference, talking with a counselor or psychologist – or even a trusted loved one – can help ease some of the emotional burden of living with a chronic condition.
Get a second opinion. A good doctor wants the best outcome for you and understands that you may want more than one opinion to get that outcome.
“Gathering viewpoints on how best to treat any skin condition is perfectly reasonable, especially when the usual treatment options aren't working or have been exhausted,” says Stringer. “Certainly I never get offended when someone wants to ask for a second opinion, and I think that most of my colleagues would likely feel that way, too. It never hurts to have another set of eyes on a difficult-to-treat condition no matter what it is.”
