What We Wish Others Understood About Eczema

At times, there can be a clear distinction between us, the people who live with eczema, and those who go day-to-day without any skin problems. Those moments are sometimes most noticeable when eye-roll worthy commentary is made, when we're being pestered by people's unhelpful advice, or when someone says something hurtful about our skin. The AtopicDermatitis.net team asked our Health Leaders to share what they wish those who don't have eczema understood and this is what they had to say:

How does commentary about our skin make us feel?

Jeff: I wish eczema-free folks would understand it's not appropriate to start inquiring about my skin in a public setting. Like all things, there is a time and a place. I’m more than happy to explain my condition, but if I’m out trying to have a good time, that’s a topic that's very low on my preferred conversation list. Not to mention, it’s rather rude if the question is unsolicited or there hasn’t been any context to warrant said question.

Ashley: I wish people would understand that we are already aware of what our skin looks like. And pointing it out only makes us more self-conscious of our skin! I wish they would understand that there's a difference between commenting and giving unsolicited advice and ASKING questions from a sincere place of curiosity.

Why do you assume you know what it's like?

Louise: As with any under-aware health issue, try researching first before diagnosing...ask about my experience first...don’t assume you know how it feels. This is a chronic autoimmune issue that affects the skin. This can manifest differently in individuals who have different genetic backgrounds and live in different parts of the world. While this can be a very painful condition, we are always aware of how we look and feel. Please just be there with us and thank you for your support.

How much does eczema impact our lives?

Raelle: I wish that people understood how consuming eczema can be of your entire life, physically of course, but also mentally and emotionally. It is way more than skin deep in those areas but also scientifically, this is a serious condition regardless of severity because it shows that the overall health of your body needs attention.

Cora Lyn: That it can be exhausting when I have a flare, continually trying not to scratch. Especially after a night of tossing and turning, scratching, bleeding, then getting up to try everything you’ve used before, to hopefully find the one thing that may or may not help the itch this time. I wish friends could understand that what worked yesterday might make it worse today. And we usually don’t know why! That it can be depressing, to constantly read or be told how great something new (or old) works, and then after purchasing it, find out it doesn't work for you. It also becomes expensive. Another thing people don't understand is that sometimes we stay home and miss a fun event because of an obvious or painful flare. But I've gotten past that as I age, mostly.

Why don't we want your advice?

Chad: That they should stop trying to recommend this or that. They do not understand that I have tried everything. It would be nice if people would not say anything.

How is eczema more than a rash?

Daisy: I wish that they understood that it's more than skin deep. It affects a person's mental, physical, and emotional health. It's an everyday thing that impacts us forever. This condition has a lot of PTSD involved that affects us forever.