How One Person Learned to Talk to Their Doctors About Eczema

Ar, an engineer and educator from Brooklyn, New York, strives to help others feel empowered; their professional endeavors include working to uplift marginalized communities. It’s a role that Ar says was uniquely influenced in part by their lifelong journey with atopic dermatitis (AD), the most common type of eczema.

In a conversation with the National Eczema Association (NEA), Ar explains how they learned to advocate for themselves in a much more confident way.  

The interview has been condensed for length and clarity.

NEA: When were you diagnosed with eczema? And how would you describe its impact on your life?

Ar: I’ve been itchy and uncomfortable from eczema all my life. I’ve had it as long as I can remember. But my diagnosis didn’t come easily.

My childhood involved a lot of topical ointments and arguments with my mom about my scratching. It was frustrating because at a certain threshold, the itchiness would sort of take over my mind.

When I was a young adult in my 20s, I sometimes felt like, because of my eczema, I wasn’t operating at the levels I knew I was capable of. Before I found a community like NEA and got the support I needed, I felt bewilderment and maybe aspects of shame around what I was experiencing.

NEA: What was your journey to finding a doctor that helped you better manage your eczema like?

Ar: I remember going to my primary care physician with my mom as a kid, and the doctor saying that I’m allergic to pretty much everything.

I did a lot of work on my own and continued seeing primary care physicians and dermatologists over the years to identify my triggers, but nothing was working for me. So, a couple of years before the pandemic, I decided to see an allergist.

Truth be told though, my first time seeing an allergist didn’t go well. The doctor searched for images of eczema online, pointed to the results and said, “This is what eczema looks like.”

It was alienating, dismissive and made me feel frustrated and upset. I wanted the doctor to understand what I was experiencing so that my symptoms could properly be addressed.

NEA: Why do you think that happened?

Ar: While I have a lot of itchiness and patches of dry skin, my skin didn’t — and doesn’t — necessarily get pink or red. That makes the eczema difficult to see unless viewed from a certain light, and oftentimes doctors wouldn’t engage at that level.

NEA: What did you decide to do about it?

Ar: That was when I really started getting motivated. I thought, “I need to prepare in a way that won’t make the allergist so dismissive of me.” I needed to be able to properly tell my story even if my eczema couldn’t necessarily be seen as much as it was felt.

I started taking pictures when my outbreaks looked the worst and kept a log of when I had flare-ups. It really became a photographic set of tasks, to try to show that I looked itchy, not just that I felt itchy. 

NEA: Did the pictures ultimately help?

Ar: Yes, taking these photos helped me feel empowered to advocate for myself. It did take me a while to find an allergist who I didn’t feel dismissed by, but since finding them, I feel comfortable speaking up for myself and about my symptoms. I now also do all I can to be a resource for others that have found themselves in a similar situation along their own eczema journey.

NEA: What message would you like to share with others with eczema?

Ar: Document, document, document. When interacting with healthcare providers, you must present the whole story of your experience, not just what’s happening in that moment.

It can put more work on us as patients, but advocating for ourselves with data is the most effective strategy.

NEA: How would you describe your relationship with your eczema now?

Ar: My eczema has gotten better since I found the right doctor for me — one who wasn’t so dismissive. We worked on a treatment plan together. And, my relationship with the disease has also somewhat spilled over into my professional life: I do a lot of work with marginalized communities and I’ve come to feel that managing the challenges that come from having eczema has given me a level of empathy and understanding of what it feels like to be marginalized, particularly in relation to health. In that way, it’s had a silver lining.

Feeling empowered

The National Eczema Association has partnered with Understand AD™, supported by Sanofi and Regeneron, to create an educational campaign that helps empower people living with eczema (atopic dermatitis) — and their caregivers — with the tools they need to speak up about the impacts of this disease. This year, Understand AD aims to encourage members of the eczema community to “color their confidence,” with a featured series of animated videos that highlight real people and moments in their lives where they felt confident in their skin and sharing their experience with their friends and community. Check out Ar’s video to learn more about their experience — plus find other eczema resources and support — on UnderstandAD.com.