The Parent Perspective of Eczema Care
Although I am not a parent, I give major props to all those mini-human owners. It is a tough job trying to keep another human alive. Heck, I have a hard enough time trying to keep myself alive (I jest, but hey, adulting is brutal, too). However, having a skin issue like eczema and TSW can make it even that much more challenging when taking care of a child.
What hurdles arise when parenting a child with eczema/TSW?
This past week, while reflecting on the parent perspective of eczema, I tapped into the caregiver group I am in. I asked them what they found to be most challenging as a parent to a child with severe skin issues (most of them were TSW parents). It's astounding how brave and vulnerable these men and women were willing to be. Perhaps you can relate to the following...
What do parents feel guilty for?
When you have eczema as an adult, it is up to you and what you wish to do in terms of management. But as a parent, the guilt can feel overwhelming, especially when the skincare routine you have used is making your child worse, not better. No one has the answers, and it's important not to internalize what is happening to your child as a reflection of your care. You are doing the best you can with what knowledge you have. If you are a loving, supportive parent, you are winning. Period.
How much does it cost?
Financial burden. Ooof, do I know this one. Even a recent study showed that eczema care was reported to cost 42% of Americans over $1000.1 The out-of-pocket expenses can be astronomical. From compounding to alternative medicines, insurance is not an option for coverage. Dupixent certainly is more than that, alone, for some. Creams, potions, lotions, wraps, clothing, therapies, it just piles, piles, piles. I feel for you, parents. You just want to do whatever you can to bring your little one relief - and it can be at a high price.
What impact does it have on the family?
When your child has eczema, that can cause a major disturbance in the balance of a family unit. If they need constant care - waking up in the middle of the night, itch fits, special attention throughout the day, extra time for appointments - it can put a damper on everything else happening in this thing called life. For one, partners start to feel distant. They are mom and dad, 24/7. They have no time for themselves, and their world revolves around comforting their child with eczema. To these incredible parents, I see you. You deserve time to yourself, and it's important to find the time. If you consistently put everything aside for your child, you will eventually run out of fuel. The only way to care for them is to find time to be you. Chisel out two nights a month where it's just you and your partner, no eczema talk!
And if you have other children, that time with them can be affected as well. The stress of that must be massive, something I never wish on a parent. Just remember: You are ONE person. Don't beat yourself up. Just like you must chisel out time for you and your partner, find that one night a month where you put total attention, no matter what, on your other little ones. Even if it's just one hour, cherish that hour. Let them know you are there for them, too.
Do parents feel helpless?
This one was unanimous. Every parent feels so much empathy for their little one. To watch them itch, cry, and bleed is unimaginable. To watch them lose out on childhood, whether that's missing parties, sporting events, or days off school, or even worse, experiencing bullying, is excruciating. I wish there was a way to take it all away. It's one thing as an adult to feel this deep sense of loss, but to watch a child is a whole other level of devastation.
Is there gaslighting and doubt?
Some parents face mega backlash from doctors and family/friends. When their child's skin is flaring, everyone seems to have an opinion. "Did you use this?" "Have you tried that?" How frustrating! Then, to have a doctor question you is not only exhausting but scary. There are some doctors that truly overstep their authority, establishing dominance over parents who are not willing to continue topical steroids when clearly the child's treatment history has exhausted that avenue.
What can parents do?
Overall, I wish I could give every parent in this community a long, needed embrace. There are so many struggles when it comes to eczema and how it is managed. But, at the end of the day, every parent just wants what is best for their little human. And I think you all are doing a stellar job. Keep advocating, find time to love yourself, and never let anyone else make you feel like a failure - especially the person in the mirror!
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