By Cynthea Corfah, as told to Michele Jordan
Growing up, we’re taught to listen to adults, doctors, and people around us. But, as we get older, I think knowing the advice to keep and ignore is key when managing a health condition.
I’ve had eczema since I was a baby, but it took off in my 20s when it went from a patch here and there to symptoms impacting my whole body. It was around that time that I started seeing things on social media about the overuse of steroids and how people were getting off of them.
So, I decided to give it a try. It was just before the pandemic, and I thought since we would be home, any side effects I’d have (visible with my skin) would be OK. After all, I’d be at home – away from prying eyes! So, I joined the bandwagon and followed the advice I was seeing on all of these posts and stopped using my topical steroids for my eczema. Unfortunately, I spiraled downward quickly into something called “topical steroid withdrawal.” Because topical steroids are the most common treatment for eczema, without them, the body can have a negative reaction.
When Advice Doesn’t Fit
It was pretty much the worst time ever for me. I was in excruciating pain. I wasn’t able to sweat. I lost my eyebrows. My skin was dark and leathery. I was not doing well. Suddenly, the community of people I found online who encouraged me to kick my meds was hard to find when I was struggling with withdrawal symptoms. I felt like a traitor as I considered taking traditional medications again. Like I was selling out. But the reality for me was I was also going through another major health condition (thyroid cancer), was moving to a bigger city, and changing jobs. I was juggling a lot, and I had a hard talk with myself about priorities and balance.
All the while, I had well-meaning people (strangers, co-workers, family) giving me advice that wasn’t always helpful. I had a neighbor drop off athlete’s foot powder on my doorstep with a note that said: “Use this! It will dry that eczema right up!” I can’t count the number of times someone has suggested a particular lotion, cream, or supplement – or things like celery juice. I’m not saying these things are bad, but when they’re offered as a fix-all for my condition, it can be embarrassing and frustrating.
Advice: How to Dish It Nicely
I’ve learned as I’ve picked up tips on my 20-plus-year journey with eczema. I speak to groups, volunteer, and try to help others who are trying to navigate this condition. Those close to me (like my family, friends, and boyfriend) get to hear how I really feel about what’s helpful (or not) in terms of advice. What tips do I give them when they want to offer advice to me or others with eczema?
First, don’t tell them to “just stop scratching!” I used to tell my boyfriend: “Don’t you think I could if I would!?” It really is mindless behavior. I don’t know if I’m doing it. That said, he’s right in that it’s not helpful and it can lead to bleeding and skin irritation. Now I’ll ask him to “please go get my toolkit.” He knows this means I need gloves, some lotion, and an ice pack to ease my skin irritation.
Second, I tell people to just ask. Please ask someone if they’d like advice before dishing it. You never know what headspace they’re in. I’ll never forget one of my first dates with my boyfriend. We went to hear live music, and an older woman noticed my skin. She came up to me – out of the blue – and began to tell me all kinds of things to do for my eczema. My night was ruined. I felt robbed. Rather than enjoying the music and my date, my focus turned to listening to this woman ramble on about what I should be doing about my health. I hadn’t even been thinking about my eczema at the time.
Top-Tier Advice
Here’s the thing. Not all advice is good and worth listening to. There is a lot of misinformation out there that can even be dangerous. Not all advice is bad either. I’ve found an amazing online community and even started my own blog because finding people who truly understand what you’re going through is critical. For me, it’s easiest to hear advice from those with severe eczema like myself. If someone says they grew out of it, then their advice may not apply to me. Finding community is so important. When I can, I work with the National Eczema Foundation and other organizations like it. The longer I was quiet and kept things to myself, the worse I felt.
I also can’t stress enough the importance of finding a trusted dermatologist. I’ve had to leave several dermatologists because they weren’t listening to me. I’ve left doctor appointments in tears. Finding a good doctor is like finding the right partner. You might have to “date around” a bit until you find the right one, but it’s so worth it!
Still, I really think the best advice is closer than we think. I tell people: Listen to your own skin! You know your skin better than any doctor, any guru, or friend.
Today, I have decided to return to my treatment plan because it was the right decision for me. I’ve changed to a job with more flexibility, and I work really hard to manage stress in my life. I try my best to eat well while enjoying life. I’m starting to feel normal again. I’m writing, modeling, and serving as an advocate for others in this fight.
I have my life back.
Show Sources
Photo Credits: DigitalVision/Getty Images, Cynthea Corfah
SOURCES:
Cynthea Corfah, 29, writer, New Orleans.
National Eczema Foundation: “Topical Steroid Withdrawal: What the Eczema Community Needs to Know Now.”
Mass General Brigham: “How to Navigate Health Advice on Social Media.”
University of Chicago Medicine: “Health information on TikTok: The good, the bad and the ugly.”
Harvard Business Review: “The Art of Giving and Receiving Advice.”
Psychology Today: “6 Polite But Effective Ways to Deal With Unwanted Advice.
