An Open Letter To The Families Of Severe Eczema Sufferers

Helpless. Broken. Angry. Tired. Stressed. Frustrated. Resentful. Just downright PISSED.

[ReviewDisclaimer]

These are all the emotions that I juggle when it comes to dealing with Risden’s severe eczema. I mean, I don’t walk around with a chip on my shoulder all the time. I enjoy my life and my family and I’m so so thankful. BUT, there are also times I’m just really mad.

I’m not writing this to the masses that deal with eczema; the masses have a patch that appears on occasion and with a little application of Trimecenalone it’s gone. That’s not the type of eczema I’m addressing.

I’m talking about the kind that is present all the time. The kind that gets strange looks at the grocery store. The kind that is insanely painful and irritating. That is the kind Risden has.

It isn’t just a patch or a seasonal flair. It’s a constant battle and we are in the trenches.

I know there are others out there who are dealing with the same kind of severe eczema. This is for you.

 

For the parents who are at their wits end. Who feel like they are going to burst into flames of frustration.

For the parents who have to dress their child in onesie pjs …. All. The. Time. (There is no car ride with normal clothes because there will be a blood bath before you get to your destination).

For the parents who are sick and tired of elimination diets and the ones who are scared to feed your kid anything due to a potential outbreak.

For the parents whose trips to the grocery store are so long because you have to read every label… of everything!

For the parents who spend hundreds of dollars buying Vanicream, Aquaphor, Cerave and maybe some new miracle lotion that won’t burn their child’s skin.

For the parents who dread bath time because they have to fight to put their child in the water. They have to hold them down and then listen to them scream tears of pain because their skin burns.

For the parents who wish their kids could go outside and play without gnats flocking to their child and landing in their open sores.

For the parents who cringe when they hear their child scratch…it may as well be nails on a chalkboard.

For the parents who have tried all kinds of doctors and treatments with no sign of relief.

For the parents whose bedtime routine is anything less than peaceful. Instead, it’s a fight to put lotion on your child’s flailing arms while their screams of torture drive out every last bit of your sanity for the day.

For the parents who get woken up in the middle of the night because their child has scratched so hard they are bleeding. (Time to break out the gauze pads and ace bandages and rub them until they can go back to sleep.)

For the parents who scour the internet trying to find a new doctor, a new medication, a new magical treatment that will finally take it away.

For the parents who have spent thousands of dollars with medical professionals that were sure could help… and still nothing.

For the parents who are conflicted with putting steroids on their child.

For the parents whose hearts break because your child lays restless in bed, unable to get a good night’s sleep, because the scratching keeps them up.

For the parents who try to keep calm but inevitably yell “STOP SCRATCHING!!”

For the parents who have to hear “Oh yeah I had that, but I changed my laundry detergent and now it’s gone. Have you changed your laundry detergent?” (Ummm yea like a billion times, as well as, soaps, clothing, sheets, household cleaners…you name it.)

For the parents whose child asks them “When will God heal my skin?”

For the parents who like me, are helpless, broken, angry, tired, stressed, frustrated, resentful, just downright pissed, I feel you.

For a few years I felt like my husband and I were on an island with no one else to understand the issues we were dealing with. I knew other people suffered with eczema but it felt like we were alone in all of the situations I just described.

I became very angry at one point.

I lashed out at God about it multiple times. I yelled and screamed when Risden was scratching so much in the middle of the night that I would wake everyone in the house.

My heart was hurting and no one could possibly understand just how bad I felt.

One day I decided to see if there were any Facebook groups about eczema. I found several and joined.

You guys, I read story after story, so similar to my own, and I burst into tears. That burden of being alone was lifted.  It doesn’t make me happy that other parents and children suffer, but it was a relief to have others who understood my pain.

As a parent of an eczema kid… you need someone to hash it out with. Eczema sucks. It’s stressful and most people do not understand your normal.

That’s the purpose of me writing this.

I get it. I know your frustration and I also want you to know you are not alone. If you come across this post and it resonates with you, please reach out. I would love to talk to you and pray for you and your child.

Eczema may not seem like a major issue to most but, you guys, everyone has their own hand they’re dealt.

I know parents who have their own situations whose children deal with ADHD, CF, spina bifida, autism etc. If you are a parent and you and your child are fighting some issue I encourage you to find other people in a similar situation. Community is so valuable. Find those people. Reach out to talk. Be understood and find comfort.

“He heals the brokenhearted and binds up their wounds.” Psalm 147:3

**If you’re just at the beginning of your severe eczema journey, I would love to share what I’ve already learned as an eczema mama for the past 5 years. READ MORE below!**