Opening Up About Eczema Is So Hard
When there's so much attention drawn just from the visibility of a skin condition like eczema, it seems like the last thing we want to do is talk about it. Why draw more attention to the flare-ups that are covering our bodies? Well, maybe that's exactly why we need to! But actually opening up about what it's like to deal with the constant itch, the awkward or disgusted stares, and just trying to express what it's like to live with something every day, isn't always easy.
The Editorial Team at AtopicDermatitis.net asked our advocate team what makes people feel so uncomfortable or afraid to talk about or share photos of their eczema and this is what they said:
Were you afraid or embarrassed to talk about or share pictures of your eczema?
- Peter, Ashley, Harrison, Jude, Jeff, and Raelle all said that they didn't want to talk about their eczema before.
- Cora Lyn, Ashley, Harrison, Jude, Jeff, and Raelle said that they didn't feel comfortable sharing pictures of their skin before.
- Cora Lyn and Jude still don't feel comfortable sharing pictures of their skin.
- Karen and Linette both said that talking about or sharing pictures of their skin hasn't phased them.
Do you feel embarrassed about eczema?
What do you believe makes people feel so uncomfortable or afraid to be vulnerable and talk about their eczema?
Cora Lyn - It's just how it's always been
I think many people with eczema don't want to draw attention to their "flaws." Or perhaps it's a case of "if I don't acknowledge it, it's not really there." I hadn't thought about it as feeling vulnerable, it's just the way it's always been.
Peter - It's a traumatic experience with negative feelings
It's a very traumatic experience for people to go through. There is shame, guilt, pain, resentment, all these negative feelings that go into this condition because of what you feel and what you’re going through physically.
Ashley - People see their eczema as a flaw or a secret
I think many people see their eczema as a flaw or a secret that should not be shared. And it's that very fear or perspective of seeing eczema as a flaw, that stops people from talking about their eczema in the first place. Eczema is not a flaw; it's a condition that can be managed and conquered. In my case, it's a condition that has brought me purpose, gratitude, and new friendships.
Karen - Feeling protective of our skin and mental health
People with skin issues try to cover them up in social settings and at work. They may be more open with family, but otherwise, feel compelled to cover skin problems and breakouts with makeup and clothing. Sometimes, it's easier to grow your hair out and use it as a veil to hide behind. It's more than just the skin problem. It has to do with not feeling very attractive. As a caregiver, I didn't want people to stare at my granddaughter and ask what was wrong with her skin. I was very protective until we learned to talk about it more easily.
Harrison - Our appearance is our first impression
Our appearance is the first line of impression in the eyes of our peers, friends, and partners. Eczema skin strips away a fair opportunity for one to get to know us. I don't think we are afraid of people reacting as a reflex. I think it's about the deeper insecurity of being socially excluded and stigmatized for something we didn't get to choose.
Jude - There's so much judgment around us and labels to live by
For me, it has made me feel different, very self-conscious, even shameful about how it looks, especially as we live in a perfectionistic society. With so much judgment and labels all around us for how we look, one can feel like there's something wrong with them. That in and of itself can create all kinds of self-loathing, even self-destructive behaviors.
Linette - The fear of rejection or not being seen as normal
I think it’s the feeling of rejection and the fear of not being accepted as a “normal” person. Unfortunately, society as a whole is so focused on the false idea of “perfection” and what do you notice first when you see a person? Their skin of course. It’s the largest organ of our body and it protects us from the rest of the world and is the first thing seen by others. Also, there is this misunderstanding that eczema and TSW is the sufferer’s fault, rather than the truth that the majority of the time, our illness is beyond our control.
Jeff - It's the fear of judgment
It all boils down to the fear of judgment by others. No one likes to be judged — especially when it comes to something that is out of their control such as a condition like eczema. When that fear is constantly floating through your mind, it makes it much more of a challenge to be vulnerable and to discuss your experiences.
Raelle - It society and our own expectation of perfectionism
Judgment by others and judgment of ourselves with a perceived notion that other people are "perfect". Eczema or not, vulnerability and admitting flaws is not seen in a positive light whether consciously or subconsciously. Lack of understanding of the disease.
Which best describes you?