Recently, my frustration boiled over as I was managing different aspects of my psoriasis care. I have some psoriasis on almost every part of my body, although not equally severely. During this particular week, like a tide rising, psoriasis on my scalp, nail cuticles, and ears decided to become inflamed with other parts of my skin.
I spent countless hours on the phone talking to the doctor’s office, the pharmacy, and my insurance provider to get my care sorted out. Thankfully, work turned out to be calmer than usual that week. But I still felt cheated out of any time to do other things that I enjoy while I took care of psoriasis-related issues instead.
Like a holiday or break from my job, I need a vacation from my psoriasis.
Psoriasis On My Mind
Psoriasis rarely strays far from my thoughts; I feel like it’s always on my mind. From the time I get up, I’m thinking about what’s best for my psoriasis. When I get dressed, I need to remember to wear loose-fitting cotton clothes that match the weather. Throughout the day, I monitor how my skin is doing and consider if I need to make any changes to better improve it. My elaborate evening skincare regimen takes time, energy, and focus that I often feel like I don’t have.
Outside of daily routines, I have a separate to-do list for psoriasis. That list can include preparing for doctor visits, managing prescription refills, and shopping for moisturizers. As I go about all these activities, I worry about my budget. I think hard about how to best manage out-of-pocket costs that come with psoriasis care.
Then add a psoriasis flare-up – if my condition is worsening, or I’m feeling uncomfortable, the skin irritation casts a shadow over everything I do. I just want it to go away. Incessant complaining and negativity often reverberates in my head as a result.
Remissions I Remember
I wish I could get a break from living with psoriasis, just like I get days off from work. This is because psoriasis has been my constant companion for the 40-plus years since I was diagnosed as a child.
It tends to cycle from not-as-bad to worse. There have been a few times in my life when the flares felt overwhelmingly unmanageable, but the handful of seasons when my psoriasis mostly cleared from my skin, at the same time, felt unforgettable.
One summer, when I was a young teenager, my dad constructed an above-ground pool in our backyard. I spent many afternoons relaxing there. I don’t know exactly what helped my skin clear that summer, but I appreciated the vacation from both school and psoriasis!
Another time, as a college graduation gift, my parents gave me a trip to China to sightsee and visit relatives. I packed all my skincare products to take across the Pacific Ocean for that six-week trip. As it turned out, I didn’t need to use them much – my psoriasis inexplicably cleared during the first two weeks of the journey.
I thought I’d found the magic formula for clearing my skin after those instances of remission. However, I unfortunately could not reproduce the same calming response with swimming and traveling again.
Dreaming of Potential Destinations
Because of these experiences, I don’t know when I will get another break from my psoriasis. However, that uncertainty hasn’t stopped me from dreaming about what I might want to do and the places where I want to visit.
Visiting every national park in the United States is on my bucket list. My older daughter gave me the best birthday gift a few years ago: a framed map of all the national parks and stickers in the shape of evergreen trees to mark the ones I’ve visited. Due to harsh travel and weather, I normally wouldn’t visit some of the parks; it would trigger my psoriasis. However, I would more likely consider going to those locations during another vacation from my condition..
My next destination would be the beach. My parents live near a popular Southern California beach. However, I only sometimes take off my shirt when I’m at the coast. I’m not as self-conscious about my psoriasis as I once was, but I still don’t like people staring at me or asking questions about my skin. If I had a break from psoriasis, I wouldn’t hesitate to sunbathe shirtless!
As an expert in my own psoriasis journey, I’ve come to expect the unexpected. I don’t rule out my psoriasis going away in the future, but I’m realistic about the prospect. Like slower times at work, I’ve come to appreciate calmer periods of psoriasis, even if it doesn’t completely clear. I also recognize that I can’t (and don’t want to) stop my life because of psoriasis and whatever condition it’s in on that day.
If you had the opportunity to take a prolonged break from your psoriasis, what would you do?
Howard Chang has lived with severe psoriasis and eczema since childhood. He is an active patient advocate and blogger, having written his column "The Itch to Beat Psoriasis" with Everyday Health for over thirteen years. Howard volunteers for the National Psoriasis Foundation as the Western Advocacy Committee Co-Chair. As an ordained minister he has served in local churches and university campus communities. He and his wife, Lori, have three young adult children and live in the Greater Sacramento area.
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