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Finding Solutions for Eczema

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Eczema: Stop Being a Flake

Medically Reviewed By Meredith Goodwin, MD, FAAFP

Whenever I hear someone say, “Stop being a flake!”, it makes me cringe. It’s not just a slight annoyance, but rather a deep-seated disturbance within me, as I then picture my eczema skin flakes, which regularly grow and fall off me all day, every day, like clockwork. My flakes are unsightly, even to myself, but to hear someone say the word “flake” with such disdain makes me cringe. Just the mention of the word elicits such a strong response from me. 

The actual intended meaning behind that four-word phrase, of course, is imploring people to stop being so unreliable. Being heavily involved in the eczema, topical steroid withdrawal (TSW), and chronic illness communities for 5 years now, I understand why I also have an issue with the word ‘unreliable.’ When people are unreliable, they start to be excluded. If there’s anything we eczema warriors want more than anything, it is to be included. This is because our stark reality, more often than not, is that we may need to avoid or cancel participating in lots of things in life because we might have an eczema reaction, or because we’re in the middle of a flare-up. Navigating our lives is similar to gambling when the odds are completely stacked against us. Sometimes, we join the fun and it works out fine, and other times, our eczema flares up. Sometimes, we really want to attend an event, but our pain and discomfort forces us to stay home. That doesn’t mean we don’t want to be there with our friends and family members, enjoying our lives. I know this makes me seem unreliable, but there’s no other way for me to be when I’m living with a chronic disease. The best way to explain this is that though I may be seen as an unreliable person, I am not unreliable; my condition is.

Living with chronic illness is like living on an alternate timeline. We’re still living in this same world with able-bodied people. But we are living it in a totally different, round-about way. To add insult to injury, more often than not, last-minute plans tend to have a higher success rate, than plans that are made months in advance. Your friends that are anticipating your attendance at an event months from now, might take offense if you have to cancel last minute because of an unexpected flare. And you didn’t cancel plans in advance because you were hopeful that you’d still be able to go. I can’t tell you how many times this has actually happened in my real life.

I have learned to accept that it must be really nice to even have the option to be or not to be a flake. That’s the privilege available in the able-bodied world. We don’t have that privilege in the chronic illness community. As eczema warriors, we are literal physical flakes, yes, but also our inherent circumstance, due to the nature of our illness, is that we are unreliable. I hope that in speaking up about our experiences with eczema and other chronic illnesses, we can change the narrative and create more understanding and empathy.

And what does that look like?

I don’t know yet how this can come to fruition. That’s why as individuals experiencing this illness, it is important for each of us to share our stories. Each story is personal and etches another facet to this illness. My hope is that by sharing our stories, others will better understand what it’s like to live in our skin, and why calling us “unreliable” or “flakes” can be extremely insensitive.

Remember: you can’t just stop being something that you are. I can’t just unzip and slip out of my skin for a proper break or rejuvenating night out. “Stop being a flake!” is imploring the addressee to be accountable for their actions. But trust me when I tell you that my eczema keeps me accountable for each and every little thing I do or encounter. The nutritious breakfast I skipped and the restorative sleep I did not have? The stress-inducing coworker that wears that bad perfume and lives rent free in my head? My compromised skin/disability/chronic illness pulls out a little heart-shaped post-it note for each incident and marks down each transgression, keeping me accountable whether I like it or not. When my stress is high or I don’t sleep or eat right, I flare up. That’s just the nature of my condition. Although I’m working hard to keep my condition managed, I also remind myself that I am human! I need to have some lazy days to do nothing and recover, and I am genuinely sorry if those days don’t coincide with everyone else’s social calendars. 

I try to see it like this: the piles of flakes and fallen post-it notes are a reminder to take a moment to practice self-love. I sort myself out. I roll the vacuum out and get my house in order. After conquering the second room, I always feel a little better. Self-care is working its magic. Lean into being a flake. After all, flakes are a sign of healing.

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Medical Reviewer: Meredith Goodwin, MD, FAAFP
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