Here you are, meeting a colleague for the first time, starting a new relationship, or simply standing in line at the grocery store. Anyone who lives with eczema knows the pressure to explain your skin condition can feel constant and frustrating.
There are still a lot of misconceptions about eczema, and everyone’s experience with it is unique. So, although explaining your eczema can feel like climbing a mountain – it is a relatively unavoidable part of living with the condition. It’s not easy, but there are a few things that can help.
We’ve put together a guide on how to explain your experience living with eczema to the people in your life, built on science and informed by people with a similar experience.
Why we need to explain and educate
We understand that the burden of explaining eczema to the people around you can feel unwanted and heavy. You’ve likely got enough going on as it is. Responding to questions, correcting misconceptions, and relaying the severity of the condition can feel invasive and take up valuable energy – especially if you or a loved one are dealing with an eczema flare-up.
When my loved one developed really severe eczema, his whole body was covered in weeping welts which he would constantly rub and scratch. Sometimes people would avoid us and stand at a distance if we were in a queue. This broke my heart as people were making judgments about him without even asking what was wrong.
Talking about the realities of eczema can help reduce these kinds of experiences for people living with it. With more understanding comes better treatment plans, improved quality of life, and more support all-around.
How many times have you been asked if your eczema is contagious? Or felt as though your condition is being dismissed or underestimated as trivial or easy to treat? These are just some of the most common misconceptions surrounding eczema.
Some misconceptions are so recurrent that even those living with eczema believe them. Researchers from the University of Southampton in the U.K. found that people with eczema tend to incorrectly view it as a short-term condition. This means that they underestimate the need for long-term treatment and seek an instant cure for their eczema instead.
You and your eczema are unique
Everybody’s experience with eczema is different, with symptoms ranging from mild to severe. Some people develop symptoms soon after birth and live with them well into adulthood. In contrast, others may begin to experience eczema in adolescence and find that it fades over time.
Stressors and triggers – such as cigarette smoke, pollen, food allergies, soaps, asthma, and hay fever – vary from person to person, along with medical advice, treatment plans, and their ongoing effectiveness. Your journey with eczema is entirely unique to you.
Support is vital
Eczema can have far-reaching consequences for those living with the condition, severely affecting sleep, relationships, work, and overall wellbeing. Effective communication and support are vital to making life with eczema manageable and enjoyable.
Dry, itchy skin can make everyday tasks a challenge. Having an informed network around you will mean that loved ones are better equipped to support you, from bathing the kids to doing the dishes or pitching in with meal prep.
The best thing anyone can do is understand that things take me longer to do and that my mind is willing, but sometimes my body isn’t able.
How to tackle the conversation
If you find yourself in that familiar place, explaining your eczema to someone new, here are some tried and tested mechanisms to help you approach the conversation with a little more ease and confidence.
Start with the basics
More often than not, people are wondering some of the same things. Clearing up the basics can make for a quick and easy chat. Next time you’re asked a question about your eczema, try something like this; “Eczema is a chronic, long-term condition; it is much more than just itchy skin; the cause is unknown, and there is currently no cure; and no, it is not contagious.” Then, it’s up to you if you want to go into more detail or revisit the conversation later.
Humour can help
Your skin needs optimum sleep to repair eczema irritations during the night; unfortunately, a lack of sleep can disrupt your skin barrier function.
It’s always coming back, and it sort of comes back with a vengeance, and it’s just like, ah, it’s like the bad guy in a movie who just doesn’t die.
Don’t scrimp on the details
If someone you care about has asked about your eczema, it’s likely that they really want to understand how it affects you. Talking about specific areas of skin, scaly patches, and skin infections might seem like a step too far, but opening up about the realities of living with eczema helps others to understand the severity of the condition as well as how best to support their loved ones.
Refer to pop culture
Eczema hasn’t featured heavily in Hollywood movies (so far!), but a few influential figures are working to raise awareness on the big screen. Pointing friends and family in the direction of other representations of eczema can take the pressure off you and help further normalize the condition.
In the HBO series “The Night Of”, the main character, Jack Stone, suffers from a case of eczema. It affects his feet so severely it overtakes every moment of his life outside of work and becomes a prominent part of his on-screen persona and the series’ overall storyline.
Help them to help you
Given that no two cases of eczema are the same, it is well worth sharing what you personally find most challenging, how you avoid triggers or prevent flares, the side effects you struggle with, and which, if any, home remedies you find effective. That way, the people around you can be much more effective and deliberate in their support.
You are not alone
Some 31.6 million people in the U.S. have some form of eczema; that’s just over 10 percent of the entire population, so the person you are talking to has likely experienced eczema before or knows someone who has.
I used to feel a little self-conscious having to explain my eczema when someone asked, but then you realize how many people know someone who deals with it.
Knowing your boundaries, committing to self-care, and getting the right support is invaluable when living with a chronic condition. Including the eczema program from Sidekick in your treatment plan grants you access to an online community of coaches to find support whenever you need it.