What I Wish Others Knew About my Eczema — Not Just a Condition

When titles go so far to “wish” others to seek knowledge of something most people sort of already know, it usually reveals a deeper level of unseen territory. Or in eczema terms, it is not only a simple skin condition but rooted in an abyss of choice-restraining lifestyle.

We eczema sufferers are shackled by numerous chains. Usually what seems normal and given to those without eczema are the privileges we crave for. When was the last time you saw an eczema patient swimming in the pool? Is it common to find them wearing white-colored apparel? Or just seeing them not touch their skin for longer than 5 minutes?

Our behaviors are strongly affected, in recreational activities, clothing choices in the morning looking at the wardrobe, and daily habits. But of course, we try to live with it and we ultimately do. But this article intends to shed light on four scenarios so if you’re an eczema patient, you are not alone and the community is with you. And if you do not have eczema, please know this is a snapshot of our lifestyle, that eczema is not JUST a condition.

1. “Such a sunny day. Let’s go to the beach!”

This common call to gather friends for a party is more often than not on a happy and positive note. But it’s different for us. When we hear that, when comes up in a split second is an imaginary beach we shall never reach, sea waves we shall never touch.

No matter how good the scenery, albeit in the mind, is still a rather far destination. Not physically, but mentally. Because we immediately worry, over-calculate, become anxious at the troublesome combination of the heated sun, the potentially skin-sensitive sunscreen, the salty seawater stingy to our cracked skin pores, and the scratches triggered by sweating from running around.

Like most people, we too can imagine a wonderland. But the self-doubting barriers and resistance pop up. At the picnic — potential plant triggers? We cannot swim — chlorine? Intense exercise — too sweaty? We’re very much indoor creatures under the protection of the magical air-conditioning.

2. Wearing white shows you are more open, courageous, and confident

These are the common established personality associations.

What is also established is that eczema sufferers also tend to not wear white-colored apparel. Guess the reason why? Because they don’t feel confident about their skin? No. That’s the consequence of having eczema. Not the cause. So why won’t we wear more white to feel more positive and “fake it until we make it”?

It is not unheard of that eczema sufferers scratch their skin at anytime 24/7. Yes, that’s day and night. This includes midnight at 3 AM. Regardless of the time, our clothing is easily stained with blood patches, plasma and pus oozing out from cracked skin pores, and even lotion with a certain tint. The result is a beautifully blended artwork of dark red and yellow blotches. White is not exactly our best color, eh?

3. “What should we eat today?”

Let me put it this way. The simpler the question, usually the more complex it becomes. Because the more choices we imply within a question, the more choices we eczema sufferers need to analyze and filter through. I could write an entire series of articles about what we can, cannot, should, need, and need not to eat. But that’s not the point today. Let’s take the basic idea of having to restrict certain dietary choices like seafood, peanuts, gluten, for example.

“Let’s eat pizza tonight!” That alone already crosses the line with two aforementioned high potential flare-up triggers.

Now, let’s be honest. As I always mention in my writing, the biggest challenge in eczema today is not the lack of solution but discipline. And it’s not our part to blame. Sometimes, we need to live life as though we don’t have eczema. Think social hours, a moderate amount of drinking, and just eating out with friends. Or maybe it’s the peer pressure that makes us eat something we don’t want. Or simply we cannot control our appetite and cravings.

Here’s a tip. If you’re dining with someone with eczema, kindly ask about his/her dietary restrictions and make it as comfortable as it is for the person to make those choices publicly. It really makes a difference.

4. We try not to scratch, really

I struggled on the tone of this subtitle. Should it sound a little dramatized as in “we try not to scratch, thank you” or “we try not to scratch, don’t tell me that again.”

Either way, you get my point. Despite the infinite amount of times we’ve been kindly reminded, suggested by doctors, family and friends, to not scratch — that’s not how eczema works. It takes having had eczema to know how different it is. That guilty pleasure of digging out your own skin.

Okay. Let’s not be too vivid. We certainly appreciate the good intentions of these people and their comments. But here’s another side of it. Just as you look at our skin which looks off (we know), we gaze upon yours because we hope to be there one day. But that one day seems a bit far as we scratch privately in the bathroom stall.

Fighting through the battle together

I hope the four scenarios can connect people together with similar experiences and thoughts. Eczema is definitely more than a skin condition. It is an all-aspect, omnipresent, choice-restraining burden on our lifestyle.

If you’re an eczema sufferer, or the parent of affected infants, accept this piece as a source of motivation and signal of a community of people going through the same struggle so that we can fight through the battle together.

If you know someone who has it, take it as stepping into the shoes of one of us. Just briefly. Because autoimmune diseases today such as eczema affects over 250 million people worldwide and are growing at an exponential scale. It takes not only physical medicines to reverse the condition but a community of similar people sharing experiences and exchanging results together in today’s interconnected world.