Warning: Reading this may make you uncomfortable because skin conditions are uncomfortable. My story is meant for everyone but maybe it could help make some of you feel less alone.
My sister and I grew up together - me with my asthma, and she with her eczema. My dad said when he was young, he had asthma and our uncle, his younger brother, had eczema. I think he said our grandpa also had had one or the other. I remember thinking this was a sort of family curse - I suppose hereditary diseases sort of are. Still, I made it through my childhood with my asthma - constant difficulties breathing, wheezing in the middle of the night, a runny nose for as long as I can remember, admissions into the hospital, and for all intents and purposes I had little to no sense of smell for years and years. A strict routine of swimming almost every weekend eventually strengthened my lungs to the point where I was able to defeat asthma. Episodes became few and far in between and then not at all.
I remember my stepmother helping my sister manage her eczema. It was primarily on her feet around her toes. I remember it looked red and dry, and it was difficult to manage. The area had to be kept dry and clean, and there were all these creams needed. Like most children, it was one of the things in the background of my life as I went about preoccupied with whatever revolving interests children have. I do know that my sister’s eczema never went away. She continues to manage it to this day. At the time I remember thinking how lucky I was to have gotten asthma and not eczema since mine could be overcome.
So when the spot of dry skin appeared on the crook of my elbow and wouldn’t go away (in fact, it grew), I remember feeling surprised and irritated. Surprised because eczema was not supposed to be my thing. Asthma was my thing. In my mind, the “family curse” was one with asthma and another with eczema, and I had already been assigned the "asthma". Irritated because this seemed supremely unfair - like a double whammy, but also irritating because it was itchy.
And it WAS itchy. That itchy little spot that wouldn’t go away got bigger, and was a bane of my life for years and years. We saw different doctors and tried different creams. People who had eczema or children with eczema recommended what had worked for them but it didn’t work for me. Nothing worked for me. It stressed me out and the stress made it worse. I would cover it up with long-sleeved shirts not only because I didn’t want people to see it, but also because I needed to keep it clean. At night my hands betrayed me and scratched vigorously away at it. In the morning I would wake up to a bloodied arm, skin torn and weepy. It felt hot to the touch, wet from the damage, and always itchy. It was also ugly to look at. I was very self-conscious about it. Thinking about it made my chest hurt and there was a general feeling of drawn-out despair. If you haven’t had a long-term condition before, this may be difficult for you to understand. Then the spot at the back of my neck appeared.
It was harder to hide because I liked to tie my hair up and out of the way. Inevitably someone would see it and ask me about it. It was awful. People made comments about how I should shower more or wash my hair with better shampoo. That this kind of thing didn’t happen to people who were cleaner. Not that it’s anyone’s business, but I shower a minimum of twice a day - once in the morning when I wake up and once in the evening when I’m done for the day, and if it’s been a busy day, I might shower in the afternoon too. And I do use soap. I do wash my hair with shampoo and conditioner once every other day. I launder my sheets and clothes regularly. So it’s hurtful when people assume I’m not hygienic.
I’ll skip ahead. I went to college in the middle of nowhere. Very rural campus, in the midst of the jungle. One weekend there was a school program where we were out in the jungle more than usual, and it was too much for the patch of eczema on the crook of my elbow. At this point, I have had eczema for about 10 years or more so the flare-up didn’t surprise me. I was annoyed but I did what I usually did to manage it, hoping as always that it would calm back down eventually. It didn’t. I’ll add here that the water supply in the college wasn’t very clean and it was a dusty environment in general. What ensued was the worst bout of eczema I had ever had in my entire life.
The spot at the crook of my arm grew and grew. It grew upward all the way to my underarm and started spreading toward my breast. The affected area had never gotten so large before. Every day was itchy and hot. It hurt to shower when water hit my skin, it was challenging to wash it with my mild-dermatologist-sanctioned-cleanser, it hurt to put clothes on it, it hurt to move my arm. It was itchy constantly. It was so very very itchy. I cannot tell you how itchy it was in words, because the English language only has one word for itchy and I’ve already used it. It was an intense, persistent, violent, angry, itch.
Battling the urge to scratch took over my brain. I knew I needed to go back to the city to see my dermatologist, but final exams were coming up and I didn’t want to fall behind on the last few weeks of classes before the exams began. The timing of this couldn’t be worse. At night my hands would betray me again and again - without my poor overworked brain to stop them, my hands scratched away eagerly at the hot, burning skin. It felt so good but I knew I would regret it in the morning. It hurt even to sleep and I cried. I fantasized during the day and dreamed at night about taking a knife and just cutting the pieces of flesh out and just burning it in a big fire. I imagined this would feel great. Not just the end of the itchiness, but the cutting of this troublesome flesh away from my body. I hated it. I wanted to wrench it from the rest of me, throw it into a raging fire and destroy this never-ending plague forever.
Eventually it became too much, exams be damned, I caved to my mom’s requests for me to come home to get medical attention. In hindsight, I don’t even remember what my grades were. Honestly, I don’t care. It just goes to say sometimes what you think is important at the time isn’t really as important as you think.
Everyone was horrified to see it - my family, my dermatologist. The treatment that round was the most expensive bill I’d ever gotten from the dermatologist, but I had never been so grateful to part with money as I was on that day. I finally managed to “conquer” my eczema.
Every day I am not itchy, is a day I’m grateful. It may be strange to be grateful for something that isn’t in your life, but I am. I am relieved. I know how bad it can be when it is bad. I am grateful for the pain I don’t feel, and the itch that isn’t itching. I look at my arm now and it might be fatter than it was years ago, but bouncy as it is, it isn’t bleeding, isn’t crusty, isn’t wet. I am grateful for it. When you have your off days, the times in between the flare-ups - enjoy your skin. Love it. Skin conditions like eczema are one of those things that need to be managed throughout life, never really going away. But every day without the itchiness is a great day. Every day our skin healthy is a happy one. Be determined, have faith in your resolve. Be kind to yourself. You are strong enough. You can do this, one day at a time.
Itch Ni San
I have had eczema my whole life - atopic dermatitis, contact dermatitis, dyshidrotic eczema. It is frustrating most of the time but I have been able to manage my flare ups thanks to recommendations from my friends with eczema. I'm here to help others like me get better too!
A poem by Itch Ni San (Eczema sufferer)
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