From everydayhealth.com
By Howard Chang
I started writing this blog, the Itch to Beat Psoriasis, 15 years ago. That was also the year Apple announced the first iPhone, NASA launched the Phoenix Mars lander, and J.K. Rowling published the final book in the Harry Potter series.
I had a lot of psoriasis back then. Early biologics didn’t help me as much as I’d hoped they would. I couldn’t tolerate the stomach upset from methotrexate any longer. I feared continuing cyclosporine treatment because it had the potential to damage my kidneys.
I felt alone with psoriasis, too. In my hope to connect with others I came across a couple of psoriasis blogs on a website called HealthTalk. By the end of the year, I had published my first blog post there, which would eventually lead to the Itch to Beat Psoriasis.
This is what I wrote to conclude that first entry: “I hope this blog can be a tool to contribute in a small way to the need to connect and communicate about that part of our lives that so often stays under wraps: psoriasis.”
Since launching my blog, my relationship with psoriasis has changed in some ways but not in others. Consider how your relationship with psoriasis has changed over time and what your hopes are going forward.
My Psoriasis Treatment Has Evolved, and So Has My Self-Care
Over the past 15 years, psoriasis research has advanced the understanding of psoriasis as an immune-mediated disease. In tandem, innovative biologic treatments have become more effective and convenient. I can testify to an improvement in my overall quality of life as a direct result.
At the same time, I’ve changed my assumptions about what these drugs can accomplish. I once expected my prescription medications to do all the work of quelling my skin inflammation. I figured that if I popped a pill, and regularly injected my biologic, I’d be fine no matter what else I did.
That meant stressing my body and mental health to the limit. I worked long hours, often not taking a day off for weeks. I regularly deprived myself of sleep to get as many tasks completed as possible. I knew I needed to exercise but didn’t prioritize it. If my psoriasis flared, I took more medicine — even if that meant a greater chance of adverse effects.
I’ve since changed my lifestyle to complement my medications. Three years ago, I faced burnout and took an extended break from my work. I realised quickly that I had to find a more sustainable job. My employment now is much less stressful and affords me more time to care for my health. Additionally, I have more capacity to improve my diet and sleep habits while striving to exercise daily.
Ask yourself: As treatments have advanced, have you changed how you manage your psoriasis, both through medications and lifestyle?
It’s Gotten Easier to Make Psoriasis Connections
The ability to connect with other people living with psoriasis has increased dramatically since I started blogging. In those early years, many people shared how alone they felt before they read the blog and took the opportunity to discuss their own experiences living with psoriasis.
The advent of the smartphone and social media has further transformed the way we connect. Before that, I had never met another person with psoriasis until after high school when I received treatment in a day-care clinic. I rarely met others living with the condition outside of medical settings. But virtual spaces have allowed us to find each other in ways we never imagined.
I embraced the opportunity to make friends and join online groups. I met friends from around the country and world who are within reach virtually if I ever need their advice or support. I later served as a National Psoriasis Foundation Social Ambassador, volunteering to blog and post on social media to further the group’s initiatives.
Ask yourself: In what ways have electronic tools enhanced your journey with psoriasis, especially in managing your health?
I Won’t Stop Looking Forward to a Psoriasis Cure
Despite these two important ways my relationship with psoriasis has grown, one aspect has not changed: my wish for clear skin. The other night I looked at the clear skin on my wife’s arm and for a moment wished I, too, could have an arm without psoriasis.
It’s not that I don’t accept living with psoriasis. I have good skincare routines and treatments. I like my dermatologist and enjoy good medical care. I’ve grown in self-acceptance and confidence through the hard work of facing emotional trauma caused by my condition.
But still, I allow myself to daydream about clear skin on hopeful days. If the advancements in medical science lead to a cure for psoriasis, I will be ecstatic beyond belief. I won’t stop looking forward to a cure until there is one.
Indeed, I’m crossing my fingers that it’ll be within the next 15 years.
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