Writing About Eczema: Why Bother?

I’m not sure why I’m writing about my eczema. Partially because eczema had become the sole topic of my conversations with my mom. Because the daily journal I’d been using became full of only thoughts about my eczema, to the point that I’d essentially stopped writing in it. If you were to build a word cloud of my thoughts over the past 3-4 years, eczema would, absolutely, be the largest word (probably followed by “ouch”, “scratch”, and “itch” in that order).

I needed a new outlet. I was tired of talking about it all the time. So were my family and friends, while they remained supportive. Frankly, I think most people who have or have had eczema and most chronic conditions could write a book about their experiences. The medical system just doesn’t seem to know what to do with us. We’re all on a long, individualized, often lonely, winding, and certainly all-consuming path.

Maybe I’m writing this to vent. Or for some pity. Maybe to try to inspire more research on the disease. Or, maybe for those not suffering from eczema to recognize and understand it when they see it in others. To know it’s not contagious. Mostly though, I hope this resonates with others who are dealing with severe eczema, so they know they are not alone. They are not disgusting.

A Sad Truth

I was also really inspired to write about my experience with eczema after I read this study which reported that people with eczema would choose to shorten their lifespans by 40% if their eczema went away. 40%! Can you imagine that? The folks in that study would rather live to 48, instead of 80, if it meant they spent their years eczema free. Can you imagine hating something so much, you’d give up 32 years of your life to get rid of it? I think about this study and its depressing nature often. Some of this blog/series of articles/online journal, whatever you want to call it, will feel very depressing. But, I also offer some thoughts of hope which I hope you’ll find resonate, too.

Taking Inspiration from Others

Finally, I was inspired to write this because of a blog I stumbled upon. I don’t normally read blogs, so it felt strangely like fate. The woman wrote about how she beat her eczema (by getting her copper IUD removed, more on that here). It brought me to tears. Unfortunately, I haven’t found a silver bullet for myself to share with you yet. I hope these posts feel like some form of camaraderie for you or your loved ones who may be suffering from eczema. Maybe some of the things I’ve tried will work for you, and please let me know if they do. I also hope this serves to help me remember my experience once I do find my silver bullet. Even looking back at pictures from crazy bad flare-ups from my past makes me feel better about more mild flare-ups when they do occur.

How & Why to Read Scratching is My Hobby

Those who stumble upon this site who haven’t had eczema will probably think many of my thoughts are dramatic. They’ll think some of the habits I’ve developed are even psychotic. Surely people who have seen me scratch in public or seen chunks of skin fall off my body have likely thought this. It is really gross, after all.

Indeed, in the middle of the night, I’ve often thought to myself: “I should be in handcuffs or a straight jacket. It’s not normal for a human to want to tear and shred their skin like this.” Maybe these are psychotic habits. To some extent this is dramatic to even write. There are certainly worse diseases, but eczema does impact nearly every moment of those who suffer from its severe forms, in their waking and sleeping lives.

If I had to describe eczema in one sentence it would be this: Eczema is like a full-body, itchy allergic reaction, and a peeling sunburn, and a rampant case of dandruff, all at once, and all the time. It’s also not really sure what it is. Some days it oozes (so gross, I know). Some days it’s so dry you can’t bend, move, straighten your arms, etc. without the skin cracking and bleeding. Lotion doesn’t (really) help. Showering doesn’t (always) help.

If nothing else, I hope anyone who reads this site will never again simply think: “Wow, that person could use some lotion and exfoliation!” when they see someone with eczema.

Happy reading. I hope something here is useful to you!