Whether you’ve experienced it or know someone who has, chances are you’ve heard of eczema, a group of disorders that can cause painfully dry, itchy, and inflamed skin. That’s because eczema is extremely common—an estimated 10% of people in the US are impacted by some form of it.
Those who have suffered through severe eczema know that living with the condition can go well beyond the physical side of things. Dealing with unrelenting eczema—the constant pain, the anger at your own body, the stress of trying treatment after treatment, and, ultimately, the stigma tied to visible skin symptoms—is often accompanied by an emotional burden that can trigger the development of anxiety and depression.1
To shed light on what this can really feel like, SELF asked five people to share the emotional side of living with severe eczema—and how they’ve been able to relieve it on some level, even if they’re still working on finding a treatment plan that works for them.
“When it was at its worst, it was incredibly hard for me to deal with the anxious feelings.”
Pam Moore, 43, experienced severe eczema from when she was a toddler until she was in her 30s. If her eczema was acting up in places that were more visible, such as her upper lip, it made her feel a swirl of embarrassment and shame. (She hasn’t experienced an eczema flare in a while, and she partially credits this to moving to a cooler, drier climate.)
“When it was at its worst, it was incredibly hard for me to deal with the anxious feelings it would bring up, wondering what other people thought, if it looked like something was really wrong with me, and if I just looked gross,” Moore tells SELF.
The emotional stress Moore experienced as a result of her eczema symptoms also trickled into other aspects of her life, such as being physically active, which Moore, who is also a certified personal trainer, is especially passionate about.
“Once I was driving to the trailhead to do my long run when I was training for a marathon in my 20s and was so excited to run in new, beautiful scenery. But I remember [feeling so anxious and] distracted because the eczema on the backs of my knees was itching so badly, and the heat and the sweat were making it worse.”
To help her get through the feelings of self-consciousness, Moore has tapped into coping tools she has learned in therapy over the years. “One thing I try to remember any time I’m self-conscious of anything related to my appearance is that whatever I’m worried about is absolutely not the most important thing about me,” she says. “I can have the thought, ‘I wish X, Y, Z thing about my appearance were different, and now I’m moving on’ or, ‘I wish X, Y, Z thing about my appearance were different, and I’m not focusing on that right now because I am so much more than that one thing about my appearance.’”
“It’s never fun to rearrange my schedule at the last minute for this.”
For Amy Gorin, 40, who was diagnosed with eczema as an infant, her severe eczema has made certain aspects of life that would normally be fun and carefree actually quite stressful.
Most Popular
- 5 Less Obvious Signs of Seasonal Depression You Should Definitely Pay Attention To
By Maggie O’Neill
- How Gross Is It to Wear New Clothes Without Washing Them First?
By Julia Ries
- Paxlovid Is Super Promising. Why Aren’t More People Getting It?
By Maggie O’Neill
“Having eczema is hard. It flares when you don’t want it to, and I can’t always wear the clothes that I want to when I have a flare-up,” she tells SELF. “I’ve also had to make last-minute doctor’s appointments to get cortisone injections when flare-ups get really bad, and it’s never fun to [rearrange] my schedule at the last minute for this.”
One of the biggest game-changers for her has been finding the right dermatologist. Gorin feels fortunate that her dermatologist is proactive. Knowing he won’t hesitate to help her when she’s flaring eases some of the stress—it’s comforting to know that she will get good medical care relatively quickly when she needs it.
“Managing [the emotional side] has been a combination of finding the right doctor and asking the right questions to the doctor, which has been huge,” she says. “We’ve talked a lot about medication, and it helps to have specific instructions from him about how to use the medications. It reduces the guesswork of solving a flare and minimizes that source of emotional and mental stress. I also find that stress makes eczema worse, so when it flares up that’s a warning sign to me that I need to work to de-stress.”
“I didn’t feel comfortable wearing summer clothing.”
For Alyssa Bourne-Peters, 25, eczema caused her to develop very visible dark patches in some of the creases of her skin, such as on her knees, inner elbows, neck, and chest. As a young Black girl from an immigrant family in America, it was already hard enough for her to not overthink how others viewed her, she says. Severe eczema and the discoloration it caused just added extra fuel to the self-image challenges she already faced.
“I didn’t feel comfortable wearing summer clothing, and winter only [made me] look even drier and ashier than I might typically look,” she tells SELF.
Bourne-Peters still hasn’t landed on a treatment that truly works well for her, and has had a more difficult time concealing her flare-ups as an adult compared to when she was a child. However, she has found some emotional solace in facing her own insecurities head-on, as well as accepting that she’ll need to be patient about potentially finding a solution.
“It took me years,” she says, “but I realized that most people aren’t noticing [my eczema as much as I am].”
“I found it hard to focus at work when my skin felt like it was screaming at me.”
Elin Alexander, 31, has experienced various forms of this condition since she was a child, including dyshidrotic eczema on her hands, which causes tiny, intensely itchy blisters; seborrheic dermatitis, which is a form of eczema that affects the scalp; as well as severe eczema all over her body. As she got older, Alexander’s eczema became more aggressive, causing very hot, itchy, and uncomfortable flares. The physical discomfort naturally impacted other aspects of her life, such as her ability to do her job and plan her wedding. Unsurprisingly, this caused a lot of stress.
Most Popular
- 5 Less Obvious Signs of Seasonal Depression You Should Definitely Pay Attention To
By Maggie O’Neill
- How Gross Is It to Wear New Clothes Without Washing Them First?
By Julia Ries
- Paxlovid Is Super Promising. Why Aren’t More People Getting It?
By Maggie O’Neill
“I found it hard to focus at work when my skin felt like it was screaming at me,” she tells SELF. “I was also embarrassed to tell my manager and colleagues what I was going through.” When she did share, she was relieved that they ended up being extremely kind and understanding.
At the start of 2021, Alexander learned about topical steroid addiction and withdrawal, a set of adverse effects that are associated with the overuse of topical steroids, per the National Eczema Association. It sounded a lot like the severe eczema symptoms she was experiencing. Alexander decided to stop using the medications she had been prescribed nearly all her life in hopes that it would help improve her severe symptoms. During this time, her skin got worse before it got better. This is commonly known as topical steroid withdrawal (TSW), and she experienced side effects like insomnia, excessive hair loss, and severe flaking. Showering proved to also be painful.
In the meantime, she found a new dermatologist and began UVB light therapy, or phototherapy, and has been using fragrance-free skin care products recommended by her doctor.
While she ultimately feels as though her skin is improving by the day, it was initially physically and emotionally challenging to deal with. “TSW is an extremely tough process to go through, with little accessible information on how long it takes or any best practices,” Alexander says.
“Staying positive and being supported by my husband, friends, and family, as well as fellow TSW warriors I met online, helped me get through the toughest part of TSW,” she adds. “It’s an emotional rollercoaster of wondering if your skin is ever going to be normal again. Patience is key, and I still get emotional to this day because it’s a lonely, unseen journey.”
“I distinctly remember a boy telling me in third grade that he would like me if I didn’t have ‘all that stuff’ on my legs.”
Carolyn S., 39, has had eczema since she was a toddler. While managing the rashes has always been really difficult, especially growing up and living in hot and humid Houston, she says the feelings of anger and shame that come with it are equally challenging.
“I’ve basically had ‘terrible skin’ my entire life, and it made me really self-conscious,” she tells SELF. “I always looked like I had chicken pox on my arms and legs, and I have eczema scarring all over my chin and neck. I distinctly remember a boy telling me in third grade that he would like me if I didn’t have ‘all that stuff’ on my legs,” she says. “After that, I was really aware of whenever strangers or peers would point out and ask about my skin.”
Carolyn also struggled with comments from people who pushed various skin-bleaching products on her in an effort to lighten her eczema-induced dark spots, which she eventually grew to embrace. She also learned to be okay with rarely wearing jewelry (as it irritates her skin) and wearing very minimal makeup, which has proven challenging in the workplace, since she feels that people don’t take her seriously because she looks younger than her age.
“It wasn’t until I [became] a mother that I fully came to accept my leopard-print-looking scars as a beautiful part of my appearance,” she says. “After many years, I gave myself a choice: Either I could continue allowing eczema to make me feel less-than or frustrated, or I could accept that I have it and focus my energy on being present in the moment. If anyone asks, I no longer have a problem telling them that I have eczema. It doesn’t define me anymore.”
Sources:
- PLoS One, Eczema Is a Shared Risk Factor for Anxiety and Depression: A Meta-Analysis and Systematic Review
