When life with eczema becomes the new ‘normal’

It’s fair to say that all humans are born with some sort of challenge. There are no perfect babies.

Some challenges are physical. Some are mental or maybe even a learning disability. Obviously, some are more challenging than others – and the degree to which they affect us vary – but being born with a health condition is not a choice.

Having to deal with head-to-toe eczema ever since my first year of life has always presented challenges in ways that are hard to explain. Like anything, you develop a tolerance to your condition’s symptoms from very early on.

It is hard for anyone to relate to. This most likely is the case with any human condition. There is no cure for eczema, and for close to 90% of my life, it has been a very irritating problem to deal with.

After a year or so taking Dupixent injections, I have become more comfortable – by no means perfect – but better for a longer stretch that I ever remember. Unfortunately, there have been side effects, but strictly speaking, my skin is better overall.

Over the course of the past year, I have become more introspective as far as the psychological effect eczema has had on my life. The only danger was that fine line of being “normal.”

A not-so-normal childhood with eczema

As a child, and even throughout most of adulthood, having eczema was anything but normal. But the effort was there. From my appearance to having to avoid foods that other kids enjoyed, not to mention the constant itching, I had to adapt to life with eczema every single day.

There was a jar of cream called Eucerin that was so stiff and thick that we would microwave it for 30 seconds to make it easier to spread on my skin. The tools to use as “itchers” varied from forks, combs, brushes, pens, toys, to just the rough end of a carpet along to scratch a back. These were, in many cases, secrets, but this was my life as a kid with eczema.

I remember coming home from school just ready to take all of my clothes off to have a good “itch session” probably for about 10 minutes. Unfortunately, with all of that scratching, skin was broken, and wounds were created.

Naturally, baths and showers were horrible as was sweating too much. Sleeping at night was a disaster. I itched unconsciously and uncontrollably until I woke up to blood stains all over my sheets the next morning.

I remember occasions when my skin was so dry that I couldn’t even stand up straight and was hobbling around for much of the day. Let’s just say, unlike other kids, pool parties and beach days were not things I looked forward to.

It’s funny, but I never let it faze me too much. I was always blessed to have a family that pushed me to try and be as “normal” as possible. For whatever reason, I was fortunate enough to be surrounded by friends and classmates who never made me feel alienated despite my condition. (I’m pretty sensitive by nature, so I’m not sure how I would have handled teasing.)

Coping with food allergies

The memories my friends and their parents have of me related to my bizarre eating patterns because of the food allergies that were associated with the condition.

My mother was forced into a lot of experimentation. The natural reaction was to find the foods that triggered the worst reactions and avoid them.

There was a rotary diet we tried that was said to have helped in some cases, but in the end, was not realistic for a 7-year-old to abide by.

For instance, there were fruit juices on cereal on days when milk was not allowed. Lunch was pieces of tuna (no mayo), raisins and green olives in a baggie. To this day, I still cannot eat seafood (with canned tuna being the exception for some odd reason) or nuts.

It’s not the end of the world if a pine nut ends up in my salad or I have a dressing with a little bit on anchovies in it. It’s more of a discomfort in my mouth. I’ve never once had to be rushed to the hospital. No epi-pen is necessary.

As I got older, I resumed a standard diet and ate like everyone around me – aside from the nuts and seafood. Unfortunately, the itching and skin “ups and downs” stayed with me throughout the years, and now here I am four decades later.

Hope for a brighter future

You try all the creams, ointments, doctors, pills, experts and theories, but in the end, you just get used to living with it. I do know that it was something that caused shame and clearly affected my confidence. To this day, I have a fear of looking in a mirror.

It’s not that I don’t look in a mirror, but I do not like to. And don’t even get me started on pictures! I know and have been told, “It’s a great picture of you” countless times, but when you see photos of yourself on those bad skin days, it’s like a solid gut punch to your self-esteem.

Finding a treatment that has made me more comfortable in my day-to-day life has been a relief.

I have a renewed sense hope and see a brighter future for all of us with eczema, whether you’re someone like my uncle in his 60s, someone like me in my 40s, or one of the thousands of kids who are fighting to be “normal” like their peers.

Mike Waggoner is a 45-year-old eczema warrior who was raised in Buffalo, New York, then moved away after graduating from SUNY Fredonia to pursue a successful media career. He spent time as an Emmy-winning sports producer for ESPN and NFL Network before returning to his hometown of Buffalo.

https://nationaleczema.org/skin-hell/