By Kylie Williams, as told to Sarah Ludwig Rausch
I’ve had atopic dermatitis (AD), also known as eczema, since I was a baby. Over the years, my eczema has changed in some ways. About 5 years ago, I got AD on my hands worse than ever before. Along with it getting worse, I developed a new kind of AD that causes small, painful blisters.
All this can take a toll on your mental health as well; at least, it does for me. When I have to adjust my life because my eczema has gotten bad, it can make me feel broken and frustrated. It affects my sleep too, as I will wake up with sensations of itching, biting, rubbing, and burning.
One thing I’ve learned over the years is that my flares are never consistent. I can use the same hand soap for 5 years, and then suddenly, it causes me to flare up.
As frustrating as this can be, I now know that anything that I may have changed in my daily routine can cause a flare-up: new locations, foods, detergents, or anything that I have skin contact with. My best advice is to just pay attention to anything you have changed and be willing to adjust to the adversity.
Sometimes, I have to change certain things in my environment. I was a bartender for many years, and when the AD on my hands was bad, I had to adjust how I worked. I brought my own hand soap, wore gloves more frequently, and avoided contact with certain fruits.
Keep trying new things until you find what works for you. For example, earlier this year, I was having a really hard time with a bad flare-up on my hands. Due to COVID-19, I found myself washing my hands and using hand sanitizer more than ever, and my hands were not happy about it. I posted a question to the Asthma and Allergy Foundation of America (AAFA) community and received a ton of responses from other people with advice on which hand soaps they had success with. Things like that can really help the process seem less difficult.
Don’t be hard on yourself. Talk to your doctor about what medicines you can take for severe itching and pain, and just work on managing it as best you can. As hard as it can be — and I know it can be hard — don’t give up!
I’ve always found treatment to be a difficult part of my eczema journey. I have tried countless topical creams, lotions, and ointments for my eczema. Along with my prescriptions, I’ve tried every over-the-counter product I can find.
One thing I can say is that you need to take breaks from certain activities so that you can give your treatment time to work. For me, this is also one of the hardest parts of having eczema.
For example, I really enjoy gardening and doing lots of projects outdoors with my hands, which is where my eczema is the worst. But it’s basically impossible to have ointments on my hands while I’m trying to work in the garden. When my hands are so bad that the burning and itching is unbearable, I take a break from doing those activities so that I can let my eczema have a chance to heal a bit.
The other important thing about treatment is to stay consistent. I’ll be honest; this can be a hard step in the journey. Keeping ointments on your skin and still trying to do your day-to-day activities can be really tough. But following your dermatologist’s recommended applications is important, even though it can be a challenge.
It’s also helped me a lot to understand the different treatment options. I’m involved with the AAFA community, and I’ve learned so much in the community blogs about treatments and even just talking with other people there who have AD. It helps to know that you aren’t alone and other people have had treatments fail.
The important thing about this community is that they can help you know what to ask your doctors and give you real-life advice when you aren’t feeling confident about your treatments.
My eczema journey has been exhausting, aggravating, and at times rewarding. I’ve struggled with my self-image and self-esteem. I still do at times, and that’s OK.
Knowing you aren’t the only one dealing with AD is one of the best ways to overcome some of your struggles. That’s one reason I’m so grateful for the AAFA community. Find what works best for you, and join communities like AAFA or find someone to talk to so you don’t feel alone. Stay consistent with treatments, and if something isn’t working, don’t be afraid to try something new. Ask questions, and don’t let your AD define you.
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