The Emotional Impact of Atopic Dermatitis

It can be emotionally difficult to live with a chronic and visible condition like atopic dermatitis (AD), particularly for children. AD, also called atopic eczema, is most common during infancy and childhood, and kids with AD may experience teasing, bullying, or avoidance from their peers because of their skin’s appearance. While some people experience a remission or clearing of their AD as they age, AD can rarely appear in adulthood or may continue to relapse into adulthood. Older children and adults with AD also face stigma related to their skin condition.1 In some cases, the emotional toll of AD and dealing with the social stigma may lead to mood disorders, like anxiety and depression. Adults with AD have a higher incidence of anxiety and depression compared to their healthy peers, and children with AD have higher levels of emotional distress and more behavioral problems than children without skin conditions. Anxiety and depression also aggravate AD, worsening the symptoms such as itching.2 The impact of eczema's intense itch The itch caused by AD is the most prevalent and distressing symptom. The intense itch frequently causes disruption to sleep, as people with AD may wake repeatedly during the night to scratch due to the excessive itchiness. Sleep deprivation can lead to fatigue, mood imbalances, and impaired functioning. The constant itching and scratching can also play a part in the stigma of AD.2 Atopic dermatitis and stress Stress plays a role in the development of atopic dermatitis (AD), as stress negatively affects the immune system and creates more inflammation. Stress is also a common trigger for relapses of AD. People with AD have an increased response to stress, including a higher amount of cortisol released in the body. Cortisol is known as the “stress hormone” and is best known for its involvement in the “fight-or-flight” response of the body.3 Living with a visible skin condition like AD can also be a source of stress and can negatively impact an individual’s quality of life. Because of the impact of stress on AD and the additional stress experienced by those living with AD, stress management strategies can be beneficial.3 Stress management techniques Although stress causes a negative impact on the body’s immune response, not everyone experiences the effects of stress the same way. Studies have demonstrated that people’s cardiovascular and endocrine responses to stressful experiences are dependent on their appraisal of the situation and their thoughts about it. Optimism and coping have shown to reduce the effect of stress on the immune system.4 One of the most effective ways in reducing stress is to use activities or techniques to create the relaxation response in the body. Relaxation approaches include deep abdominal breathing, visualization, prayer, meditation, or yoga.5 Exercise, such as walking, benefits the body by deepening the breath and by relieving muscle tension. Physical activity that combines movement, deep breathing and mental focus, such as yoga, tai chi, and qi gong, can help induce calm.5 Psychological help People with AD may benefit from seeing a mental health counselor or therapist. Counselors and therapists can provide coping skills to help people with AD deal with the psychosocial and emotional aspects of living with a chronic, visible disease. There are also several psychological and educational interventions that have been shown to improve the effectiveness of topical therapy and interrupt the vicious cycle of itching and scratching, including: Relaxation training Habit reversal training Cognitive-behavioral techniques Stress management techniques2 [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] Atopic dermatitis (AD) is a common skin condition that creates a significant burden on those who are affected by it, as well as their family members. Physically, AD causes the skin to become red, scaly, weepy, and itchy. The itching and scratching can impact the quality of sleep, and when the patient is a child with AD, the sleep loss can affect the whole family. The effect of AD on sleep is significant and contributes to a higher rate of behavioral and school problems in children, poor work functioning in adults or parents, and increased daytime drowsiness in everyone. People with AD report a lower quality of life than the general population, or than people who are living with conditions like diabetes or hypertension (high blood pressure). Emotional impact Emotionally, AD causes a burden, too, as having a visible skin condition causes psychological distress, including frustration, anger, and embarrassment with one’s appearance. A child with AD may experience bullying or exclusion, and adults with AD also experience the stigma of having AD. Quality of life scores of people with AD include the mental health aspects, and people with AD have higher levels of anxiety, which is of particular concern as stress can trigger the itch-scratch cycle and set off a flare of AD. Time and money In addition to the physical and mental aspects, AD causes a burden of time and money. Caring for someone with AD includes the financial costs of treatment, time missed from work for doctors’ appointments, and many lifestyle changes, including using special soaps and detergents, modifying diets, removing carpets, and using clothing or linens made with all natural fibers. The lifestyle changes can affect the whole family, and making the changes can create a strain on a family’s budget. Reducing the burden People dealing with AD and their families need more than just treatment for their physical symptoms. Research has shown that educational and psychosocial support programs can reduce AD symptoms and stress associated with having the skin disease. One clinical trial compared the effectiveness of a dermatologic educational program, relaxation training, cognitive behavioral training, and a combination of dermatologic education and cognitive behavioral training versus standard care in adults with AD. After a year of the program, those who had some form of psychological training had significantly improved symptoms of their AD than the standard care or dermatologic educational group. Finding support Parents of children with AD frequently need education and support and joining a support and patient advocacy group, like the National Eczema Association, can provide both. A research project that evaluated the effects of educating parents on AD found that children of parents who received a 2-hour educational session from a nurse had a decrease in the severity of their AD compared to those families who just received routine information at their doctor’s visit. Educational programs include instruction on the proper use of emollients and medications, and studies have shown that when parents have the proper education, the family’s quality of life and coping skills are increased and treatment costs are reduced. Another way to reduce the burden of AD is by seeing a specialist – a dermatologist – rather than receiving care from a primary care physician. Research has shown that individuals with AD who receive care from a dermatologist had a decrease in the impact of AD on the family and decreased out-of-pocket expenses. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] I was writing a blog about whether a child will outgrow atopic dermatitis and kept getting stuck. My fingers felt heavy. I remembered exactly how I felt when we found out that dairy was one my granddaughter’s triggers. It was a paralyzing ache somewhere around my heart. See, I had been feeding her home-made strawberry frozen yogurt pops. Her skin was bright red and broken out. We took her to the doctor and he suggested we do an elimination diet. At the time, my guilt felt harsh. Today, I have tools that help me examine negative emotions and move right through them. This helps lessen my own Nana guilt trigger! If you have any guilty thoughts, try these steps. Dealing with feelings of guilt Acknowledge what happened – Just saying it out loud, even to no one in particular, helps. It might be that you tried a lotion or cream that set their skin on fire. Perhaps you forgot to bring the meds with you. Maybe you offered a food that brought on a reaction. Just acknowledge that you don’t like how it feels when that situation from the past crosses your mind. Forgive yourself or other caregivers – We all do our very best with the knowledge that we have. Have we made mistakes? Certainly. We can’t do everything right all of the time. Every parent, grandparent, or caregiver makes mistakes. No one is going to judge you. If you saw someone else who accidentally did something that may have made their child feel discomfort, you would sooth them. So sooth yourself. It’s okay to make mistakes. Let it go – This may be harder than it looks.... just like me and the yogurt pops. We spent several days getting Jill’s skin cleared up. She spent the night, and I fed her a 3:00 AM bottle on the couch - looking straight into my kitchen where I lovingly made the pops. I knew that my intention was a good one. It eased my mind. Writing today, I still remember the sleepless night and wondering if she would outgrow her skin rash. Do we ever really let anything go? Maybe not entirely, but I know not to allow negative feelings to stay. I let them float right past. Do something good – Start making positive changes to help your little one feel better. By cuddling and singing to my granddaughter, I assured her, and myself, that I was going to be more cautious. We got serious about the diet. Working to help find a solution is a good thing. You’re doing something good right now by reading about how to help your loved one with skin issues. The fact that you’re experiencing guilt is an indicator of your goodness. You care enough to do your very best for those you love. If you are willing to acknowledge that you blew it, you can forgive yourself. Letting it go releases the possibility of changes in your routine. You are now making the best use of this moment with your little one. Guilt be gone! [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"], When I was 8 years old, I was diagnosed with atopic dermatitis, a diagnosis that I didn’t take very seriously when I was that age, because to me it was simply a controlled rash that I sometimes required a special medicinal cream to keep the symptoms at bay. Other than that, my atopic dermatitis was mild, in remission, and did not prove to be a burden on my day to day life. Honestly, after that first doctor's appointment, I never thought about it unless my mom asked me about it. Double diagnosis Unfortunately, three years after my diagnosis, I was handed another diagnosis, ulcerative colitis. Ulcerative colitis is a form of inflammatory bowel disease that is lifelong and causes a host of gastrointestinal issues. In contrast to my atopic dermatitis, at the time of my diagnosis of ulcerative colitis, a lot of very embarrassing and difficult issues made their way into my life, including a flare-up of my atopic dermatitis. Becoming my diseases All of a sudden, I felt defeated and like disease was all that defined me. The impact of my first diagnosis of atopic dermatitis suddenly began to weigh on me and I realized how I hadn’t had taken the proper amount of time to cope with that first diagnosis and was in no shape to take on this new one. I soon became embarrassed about both issues, noticing the rashes that never bothered me before and becoming hypercritical of every symptom I felt. Although this time trying, I quickly learned how to cope with both conditions, manage them, and realize that I was more than these diseases. Knowledge is power The first and most important tool that I learned was that knowledge is power. Without knowledge, I often felt a lot of fear of the unknown and the “what ifs.” Taking charge of my illnesses, including understanding them, what their triggers were, what my future held, and what I could do to keep myself healthy gave me a lot of power. Gaining control Before gaining this knowledge, I felt like it was all out of my hands like the universe would control what would happen to me, and there was nothing I could do about either of these conditions. Now, I am aware of my body and am able to control my flare-ups when they do come along, making all of that far virtually disappear. Support systems It took two diagnoses to finally help me realize that it is okay to rely on others and confide in them for support. After my diagnosis of atopic dermatitis, my mom often told me that I could talk to her when times were hard and I thought that was silly because I thought all the condition was a small rash. More than meets the eye I had no idea that it could get worse and that when I became a teenager those rashes might make me feel embarrassed. But as I was diagnosed with a more embarrassing disease, I learned that support systems are key to getting you through the hard times, the times that try your patience, the ones that just seem unfair to have this condition to start with. It doesn’t make you any less cool or strong if you rely on support groups. Building strength It is often so relieving to just get those hard times you are dealing with off your chest. My mom, my husband, and support groups for both of my conditions are the two biggest supporters I have. I believe that without them, it would’ve been a lot harder to get through some of those flares and scary times at the doctor. I swear by support systems. They are the best thing to give you that extra strength. Your disease doesn’t define you For a long time, I felt like my disease defined me. I felt like no matter what happened to me, my diseases would cause me issues, no matter how good or exciting the new thing to come my way was. Something I have learned over the years is that my disease doesn’t define me. It is often hard to feel, when you have two diseases, that you are not just "diseased". It feels as though that’s how you should identify yourself and how others will view you. You aren't diseased goods Let me tell you, that isn’t true. Often, no one thinks you are diseased goods and no one is really thinking that about you. Of course, there will be those individuals that aren’t so nice, but you have to take what you can and throw out the rest. That is what my mom taught me and it has paid me dividends throughout the last 15 years dealing with a dual diagnosis. Taking the power back from disease So, when it feels like disease defines you, don’t let it. Often times it is in our heads, haunting our thoughts and almost not real. Disease doesn’t define us, who we are, what we do, and what we accomplish define who we are and what we are capable of doing. The fact that we are able to tackle and deal with lifelong incurable illnesses makes us even more incredible, strong, resilient, and should make you that much prouder of who you are. What do you do to cope with your atopic dermatitis? [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"],Living with conditions like atopic dermatitis and eczema can be challenging. Our conditions don't get much attention and it can be easy to feel like you're "less than" or your condition doesn't matter as much as the next. But it does. It's okay to... Feel It's okay to be emotional. It's okay to be angry. It's okay to cry. Give yourself permission to feel. Atopic eczema (also known as atopic dermatitis) may not get a lot of attention. Our conditions may not make the news or have huge documentaries, but they still matter. You matter. It's okay to be mad or feel unhappy. It's okay to feel different. And it's certainly okay to express those emotions. Allow yourself the freedom to feel. It can be such a stress reliever. You're still strong. Even the strongest of people have emotions. Talk It's not always easy to talk about a condition that can be spotted so easily by the public. It can get embarrassing and at times even a little awkward. Talking about your condition, or the stress of taking care of a loved ones can be just what you need. Talking can help calm your nerves and allow you to bring all of those emotions you've been pushing down, to the surface. Take a break I know. You've done your research. You've seen those five top dermatologists in your area, even a few in other areas too. You've tried all the latest treatments. You've bought the expensive over-the-counter remedies. It's okay. We've all been there. I know what it's like to be willing to do anything for a moment of relief. It's hard. It's a hard life to live. It takes a lot out of you. It's okay to take a break. Take some time for yourself. Take some time away from Google. Put away all the books. Even if only for a day, that may be just what you need. Self-care is just as important as any other kind. It's good for your mental and physical health. Don't stress yourself out so much being so focused on "feeling better" that you cause your condition to flare or worsen. Take time for yourself. Breathe a little. Do some things you enjoy. Complain It's not "just atopic dermatitis" or "just eczema." It's much more than that. Your condition is serious. Don't feel like you always have to quiet yourself about your condition and how you really feel. Let people know how you feel. Be honest. Complain if you want to complain. Scream. Yell. Show people how complicated your condition really is. Show It For yearssss I felt as if I needed to hide my condition. I was so embarrassed. Ashamed. I didn't want anyone to see what my condition had done to my body. I feared people would judge me. Talk about me behind my back. Was I right? Probably, but I don't let that scare me anymore. When people see my arms, I don't stress too much anymore. If they ask, I'll tell them. Usually, they know someone with something similar anyway. Don't feel ashamed of your body. After all, everyone has something they're not proud of. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"]

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