Meet Maisie

Eczema according to Maisie (caregiver)

One thing everyone should know about eczema

“Eczema is not just a skin condition and it is not just skin deep. It affects the whole person: physically and emotionally. Eczema is unpredictable and all-consuming. Everyday life activities that you and I take for granted require planning and time for someone with eczema. For example, a shower is not a quick 5-minute hop in/out. It’s a 45-minute ordeal to shower, apply medicine, apply lotions, air dry, apply more if needed, air dry some more before being able to put clothes on.”

One thing about how eczema impacts the family dynamic

“Eczema significantly impacted our family dynamics from day one since Jeremy had eczema as an infant. Much of my energy was focused on tending to Jeremy’s needs. It was very stressful, all-consuming, emotionally draining and didn’t leave any time or energy for our other son who was a baby himself, only being 2.5 years older. Everything we did was centered around trying to manage Jeremy’s health, eczema, sleep and comfort.”

One thing about how eczema impacts finances

“Eczema is expensive! It’s not only the prescription medicines, it’s also all the peripherals: numerous lotions, a variety of creams, shampoo, soft clothing that wouldn’t irritate, sheets, towels, etc. And when the conventional didn’t work, we turned to alternative treatments and methods, paying out of pocket. In times of desperation, we tried everything we heard about, read about, to try to get the eczema under control. It was and is a financial drain!”

One thing about how eczema impacts self-image

“Obviously, eczema impacts the self-image of those affected and I hadn’t really thought about it impacting me as a caregiver. But it has. I didn’t feel ‘enough.’ I didn’t feel I was doing enough, didn’t feel I was a good enough mom because I couldn’t make it better and because all my friends’ babies were sleeping through the night and mine wasn’t!”

One thing that healthcare providers should know about eczema

“I wish our healthcare providers talked to us about the mental strain and emotional toll eczema takes. Not just on the patient but also on the caregiver and the family. We just didn’t talk about that back then. We were so focused on trying to manage the physical aspects of eczema. We had no idea of the mental impact and how to deal with it.”

One thing that eczema has given you

“A village. I truly believe it takes a village to raise children. Even more so when the child has a chronic condition. We have been extremely fortunate to be surrounded by an incredibly supportive community of family, friends, teachers, coaches and school counselors. Family. Friends. Faith. Our village. That is what got us through.”

One thing that eczema has taken from you

“Spontaneity. We were not able to just pick up and go. All events, activities, travel, had to be planned with eczema in mind. We had to map out road trips to include places that Jeremy could eat at. We packed sheets and towels from home. We had to be aware of potential triggers and be prepared for flare-ups. That meant packing extra meds, lotions, ice packs, wet wraps, etc. But with a positive attitude, an adventurous spirit and planning, we still had great fun!”  

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