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After Misdiagnosis, I Learned to Speak Up For Myself: “It Was Liberating”

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eczema Photo: Awet Russom

Eczema is a common yet challenging skin condition that can greatly impact a person’s daily life. For people of color, living with eczema is often a lifelong journey, marked by physical discomfort, emotional hurdles, and a search for effective treatments.

Early Life with Eczema: A Manageable Condition Turns Challenging

Awet Russom recalls his first experience with eczema around the age of seven. For much of his early life, the symptoms were relatively manageable. It wasn’t until high school that eczema started to affect more visible areas, which led to a heightened awareness of the condition.

“I noticed a small rash on my eyebrow, and I realized it was starting to affect my face, or it felt like it was spreading,” Russom tells BlackDoctor.org. “At that time, I tried a lot of different things, but it significantly worsened, especially during college. It was actually debilitating for a little while.”

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With the eczema taking a toll on Russom’s mental and physical well-being, he decided to prioritize his health more seriously, visiting multiple dermatologists. However, finding the right treatment remained elusive.

“I went to see a dermatologist. That led to more dermatologist visits, but the treatment plans weren’t really working, so I had to take matters into my own hands,” he shares.

Russom decided to research new treatments, seeking out alternative methods to control his symptoms.

Eczema in the Summertime: Battling Heat and Flare-ups

For Russom, the summer months were especially tough due to the heat, which triggered frequent flare-ups.

“During the summer, my eczema was always at the top of my mind,” he adds. “I played a lot of sports, and I spent a lot of time outdoors, especially back then—and even now. But in the summer heat, I had to think carefully about what I wore. I couldn’t just wear short sleeves. If I was indoors and flaring up, I’d want to wear long sleeves. The heat would make me sweat, and then I’d have an itch attack. I had to constantly think about what I was wearing and what I was doing. Could I play sports? Could I even shower if my eczema felt tight? Would it make my skin feel worse later in the day? Would I have to moisturize after? It was always on my mind.”

Managing his symptoms became a balancing act of staying comfortable, and hydrated, and minimizing physical strain.

The Mental Health Toll of Eczema: Hidden Struggles

Living with eczema isn’t just about the physical symptoms—there’s also a significant mental health aspect. For Russom, the constant worry about how his skin looked affected his self-esteem.

“I was always thinking, ‘Is my skin presentable? Is it dry right now? Do I need to moisturize?’ It becomes this constant thought process, which really wears on you, especially if the eczema is all over your body. It can put you in a bad place mentally, and it did for me,” Russom recalls.

RELATED: How To Choose the Best Eczema Product For Your Skin

The Power of Community: Finding Support through Social Media

A turning point for Russom came when he discovered a community of others dealing with eczema through social media.

“That was a pivotal point in my eczema journey. For the longest time, I wasn’t talking to anyone about it—I was just managing it on my own. I even felt like I was hiding it for a large portion of my life,” Russom says.

Social media played a crucial role in helping Russom feel supported and connected. Finding people who looked like him and shared similar experiences was particularly empowering.

“I didn’t feel like anyone understood, but then I found a few people on social media who were going through the same thing. I reached out to them and said, ‘I can’t believe you’re going through this—I’m going through the exact same thing!’ It was really validating to see that. I didn’t see many people who looked like me going through it, so it was even more liberating when I connected with others,” he says.

For individuals with eczema, diagnosis and treatment can sometimes be complicated by skin tone. Russom faced unique challenges in finding dermatologists who fully understood how eczema manifests differently on darker skin tones.

“I’ve had instances where a small rash was misdiagnosed as something else because the doctor didn’t know what eczema looks like on darker skin. I remember one doctor actually apologized to me because she didn’t realize how eczema manifested differently on my skin and ended up running unnecessary tests,” Russom recalls, adding that finding a doctor or dermatologist who understands your skin type and listens to you is key.

RELATED: Understanding Eczema Triggers: How to Identify and Manage Them

Tips for Managing Eczema and Finding the Right Dermatologist

If you are in search of a dermatologist, Russom offers the following tips:

  • Do Your Research: Finding the right dermatologist can be tough, especially if they don’t understand your specific needs. Russom recommends seeking recommendations from others who share similar experiences.
  • Look for Dermatologists Who Listen: It’s essential to find a healthcare provider who takes the time to understand your condition, listens to your concerns, and approaches your care holistically.
  • Stay Hopeful and Proactive: The journey to finding the right treatment is often filled with trial and error. Russom encourages people to stay hopeful and keep advocating for themselves.

Advancing to Advocacy: Sharing the Journey and Helping Others

Today, Russom is an advocate for others with eczema, using his personal journey to inspire and offer guidance. He urges those in the early stages of their eczema diagnosis to stay connected and build a support system.

“It’s such an isolating condition, but finding people who are going through the same thing opened up a lot of options for treatments that I didn’t even know existed,” Russom says. “That community was a key turning point. They helped point me in the right direction for better treatment, and that’s been crucial for me.”

By sharing his story, Russom hopes to break the stigma around eczema and encourage others to speak openly about their struggles.

Practical Advice for Managing Eczema in the Summer

As someone who continues to manage eczema, Russom also offers practical advice for the summer months:

  • Stay Cool and Wear Loose Clothing: Heat is a major trigger for eczema flare-ups, so it’s important to wear light, breathable fabrics that keep the skin cool.
  • Prioritize Your Skin: While it can be tempting to hide flare-ups, Russom encourages others to put their health first and not feel ashamed of their condition.
  • Learn When to Say No: Sometimes, managing eczema means skipping certain activities that could exacerbate symptoms. “It’s okay to say, ‘No, I can’t go to this event because it’s too hot,’ or ‘I’m flaring up, so I need to take care of myself,’” Russom advises.

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