My Son With Eczema Doesn't Like Having 'the Itchies'


I have a son who never sleeps through the night comfortably. Who can’t go outside to play in the sun for more than a couple of minutes. Who will scratch chunks out of his skin, if he does. Who other kids don’t want to sit next to in school at the reading circle because of his sores. Who so badly wants to have lots and lots of friends. Who is only 5 years old and already wishes to be somebody else.

“Mom, I want to be like Bryce from my school,” he says to me in the middle of one of his scratching fits.

I grab him a cool wash cloth to place on his skin, knowing that it won’t do much to relieve his pain, or stop him from tearing himself open. He has to stop on his own, which usually isn’t until after the blood starts pouring. That’s when he says it feels better.

He’s in his bed, uncontrollably rubbing his legs and feet together while his hands are busy taking care of the rest of his body. They’re frantically moving from his face to his arms to his chest and back.

He tells me again, “I want to be like Bryce. He doesn’t have the itchies. And the itchies hurt me.”

Still under the scratching trance he continues, his mind racing as fast as his fingers.

“Or, I could be the Hulk, and smash them out.”

“Or Captian America… and block them with my shield.”

“Or, or, Spiderman….so I can trap them with my web.”

“Right, mom?”

He looks up at me. So innocently. So sweetly. So miserably. And there’s nothing I can do for him.

He has eczema; an uncomfortable skin disease that causes dry patches on the body to become unbearably itchy.

He doesn’t have the same kind of eczema that your neighbors’ sister’s first cousin’s son’s daughter has. Because across the board, eczema is different for everyone, which is what makes it difficult to treat.

We’ve given him every kind of cream, lotion and ointment under the sun. Yes, he stays lathered up daily. Yes he’s hydrated. Yes, we’ve tried this brand of soap and that brand of soap. Yes, we’ve tried oatmeal baths. Yes, we’ve done wet wrapping. Yes, we’ve even tried breastmilk. Yes to coconut oil. Yes to free and clear detergents and clothing brands. Yes to oatmeal. Yes to emollients. Yes to fruits and vegetables. And steroids. And cancer strength medications. And I already said yes to oatmeal, right? Now his dermatologist wants him to try an injectable that has only been approved by the FDA for ages 18 and older. So, it’s not for a lack of trying things.

What I want for everyone to know is this:

Eczema isn’t contagious — your children can’t catch it from playing with mine. It doesn’t make him any less attractive.

Or any less of anything, actually. Quite the opposite. He’s become the most compassionate little boy I know. No, I’m not making up excuses to get out of your kids’ party. Or even your party. We really can’t go out if it compromises his skin.

Eczema is uncomfortable. It’s an every day thing. It’s an every night thing. It’s emotional. It’s physical. It could be forever. And it flat out sucks.

#exposingeczema

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by kwanchaichaiudom

TOPICS
JOIN THE CONVERSATION

Related to Eczema

Olga Mecking

My Life With Eczema in the Summer

Oh summer — the time of hot weather, sweaty bodies and naked skin. For me, it’s also the season of itchiness. When I was a teenager, I went through all the changes that can be typical for this period: I grew myself a pair of boobs, my hips got wider and zits started appearing on my face. [...]
face covered with cracked surface

Eczema Is More Than Dry, Itchy Skin

Eczema is more than just dry, itchy skin. While common in childhood and infancy, most children grow out of it. Those of us unlucky enough to have eczema as adults face a lifetime of scarring, both physically and emotionally. Most of us were not told as children it would be a lifelong chronic illness (because again, most kids [...]
Closeup portrait, dull upset young woman sitting on bench, really depressed, down about something, isolated outdoors background.

When You're Tired of Trying to 'Remain Grateful' During a Life of Chronic Illness

Chronic illness came into my life at a time when I thought I had everything in order. I was married, with a newborn and a 9-year-old, and looking at law schools. One day, I found my life suddenly trampled on by rheumatoid arthritis (RA) and fibromyalgia and after that, any talk of gratitude would fill me with [...]
Cupcake decorated with colorful sprinkles and a sparkler

To Celebrate – or Not to Celebrate – the Anniversary of My Diagnosis Day

I’m struggling. Do I post about the upcoming date, or do I let it pass? Do I talk about this day — this huge day in my personal history — or do I let it sit under the proverbial leaden rock in the back of my mind? Should I just coast through the day, and [...]