Living with Psoriasis, psoriasis

Introduction to the Four Seasons of Healing

At eight years old my life was turned upside down when dermatologists diagnosed me with severe psoriasis. Psoriasis is a noncontagious immune-mediated condition that inflames the skin and joints.

It became an imposing part of my life at that tender age. The personal struggle of living with psoriasis not only came from the physical discomfort of red, itchy, burning, thick, scaly lesions. Anxiety, depression, and hopelessness accompanied the physical discomfort.  

Everyone is touched by physical illness. Whether experienced personally or as a friend, family member, or caregiver, disease and illness are part of the human condition. The coronavirus pandemic started in the United States with the first confirmed case on January 20, 2020. The ensuing spread and devastation revealed just how fragile public health can be in the face of a novel pathogen.  

The personal struggle of living with psoriasis not only came from the physical discomfort of red, itchy, burning, thick, scaly lesions. Anxiety, depression, and hopelessness accompanied the physical discomfort.  

The increasing prevalence of certain chronic health conditions adds complexity and risk to medically caring for those who contract COVID-19. Indeed, those with chronic disease already bear a great burden without those complicating effects. The Centers for Disease Control and Prevention (CDC) notes on their website that “six in ten adults in the US have a chronic disease and four in ten adults have two or more.”[1] They describe the impact of chronic disease this way: 

Chronic diseases are defined broadly as conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both. Chronic diseases such as heart disease, cancer, and diabetes are the leading causes of death and disability in the United States. They are also leading drivers of the nation’s $3.8 trillion in annual health care costs.2

 While the financial costs of chronic illness to the healthcare system and individual are great, those numbers do not account for the hidden impacts of these illnesses. Chronic disease and illness often affect one’s spirituality, emotional health, relationships, employment, or even the ability to perform basic daily tasks. 

Each day since my diagnosis I have grappled with having a chronic, severe, stigmatizing skin disease. Indeed, the emotional and spiritual wounds often felt insurmountable to overcome. 

Struggles at Home and Beyond 

I applied messy treatments and sustained painful taunts in those early years living with psoriasis. I especially hated putting liquid coal tar in a petroleum base on my skin overnight. The coal tar treatment smelled like a newly paved road while it stained everything it touched. The greasy feeling on my body made sleeping difficult. To make matters worse, my older brother called me names like “tar baby.” Those hurtful words made hours of treatments each day that much more difficult to bear.  

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Living with Psoriasis, Personal Faith, Spirituality

Two Questions About Prayer

(Photo by Sagui Andrea on Pexels.com)

Last month I posted a column on Everyday Health titled How the Power of Prayer Helps Me Face My Psoriasis. I shared questions I had as a young adult with psoriasis who recently found the Christian faith:

Is it selfish to pray for yourself when the world has real problems? Is it possible to know if a spiritual practice like prayer can be a healing force in the face of a chronic condition like psoriasis? Am I wasting my energy praying if my health doesn’t improve?

You can read more about my thoughts on these questions in the column. Here I would like to interact with a couple of question that didn’t make it into the Everyday Health blog.

How Much Prayer Is Enough?

“I pray because I can’t help myself. I pray because I’m helpless. I pray because the need flows out of me all the time, waking and sleeping. It doesn’t change God. It changes me.” (Attributed to C.S. Lewis in the movie Shadowlands).

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Living with Psoriasis, psoriasis

The Science of Skin: A Journey of Hope and Home

This post, and my travel to the event, was sponsored by AbbVie Inc. Personal opinions and thoughts are my own.

Standing next to my poster at The Science of Skin, NYC

I rushed into the Whitby Hotel in New York City feeling late to The Science of Skin educational event. The stress of navigating a new city amped up my heart rate. I had traveled across the country and didn’t want to miss a beat. 

As I descended the stairs to The Reading Room, I felt transported to a familiar space. I first saw a picture of myself on a poster with a quotation about why I started blogging about psoriasis. Walking in further, I greeted new and old friends.

Indeed, The Reading Room became a special place for those few hours. I might characterize it as a safe place, but it was more than that. I not only learned from doctors and heard fellow patients transparently share their experiences with chronic skin conditions, but I also reflected on my own psoriasis journey.

A Student’s Attitude Toward Psoriasis

Since my diagnosis, my understanding of psoriasis has grown as I have taken the initiative to learn and read about the disease, its causes and the treatment landscape. I don’t claim to know it all, as information and treatments continue to evolve, so I always look forward to opportunities to be a student of psoriasis, which this event afforded.

The Whitby Hotel Reading Room, NYC

During the panel discussion about psoriasis, I recalled instances of people who told me flatly that psoriasis is just a rash. Over 40 years of living with this disease, I’ve seen the science prove them wrong. Now we know that psoriasis is a chronic disease linked to many factors, including an overactive immune system.

When I see those red plaques and lesions on my skin, I now know I’m seeing inflammation that is forcing my body to produce skin cells at a much faster rate than normal. Instead of a 28-day skin cycle, psoriatic skin produces new skin cells in a four to five-day cycle. That faster skin production leads to thickening of the skin as cells build up on the surface. Those skin cells then become the flaky scales and plaques that get all over my bedsheets, clothes, and floor.

In addition to discussing the science behind psoriasis, the dermatologists at the event also addressed other areas of psoriasis research. One even talked about how knowledge gained from developing psoriasis treatments is now helping researchers to develop treatments for other conditions. 

Coming to Terms, Again, With Psoriasis’s Impact on My Life

The Science of Skin event turned out to be more than just a scientific presentation of psoriasis and other chronic skin conditions, but rather, a look at the whole person. The discussions helped me realize that I’m not always as willing to acknowledge the deep impact of the disease on my daily life as I think I am.

I usually wonder if my skin will worsen with the stress of travel. This time I did feel a bit of skin discomfort, but when people asked how I was doing I quickly said “fine.” When speakers started talking about the isolation and shame that some living with chronic skin conditions can experience, I felt challenged once again to stop hiding the impact of psoriasis on my life.

Wonderful seeing Nitika Chopra who presented her experience with psoriasis

A survey conducted by the National Psoriasis Foundation that found 87% of psoriasis patients feel helpless and embarrassed, and 88% believe that psoriasis affects their overall emotional wellbeing, really resonated with me. Psoriasis has never been just skin deep for me, and now I have stats to back it up. The presenters emphasized the physical, psychological, emotional, and social impacts that can come with a visible skin condition—all of which I can attest to in my own experience. 

At the same time, I was glad to hear one dermatologist’s observation of how the psoriasis patient community’s mood has turned more positive as more effective treatments have become available. I’ve experienced that transformation in my life, and the last decade has been the most productive for my advocacy, work, and education. I didn’t settle for “good enough” and asked for more when it came to my psoriasis care. 

Now I want other patients to feel empowered to have an honest discussion with their dermatologists about their treatment goals for achieving clearer skin. As I grew in sharing with my dermatologists how I’m really feeling and thinking, I found myself more involved and satisfied with the decisions that were made for my psoriasis care.

As The Science of Skin event ended, I looked back at The Reading Room one last time.  The event marked a moment where I felt hope again for people living with psoriasis. I confidently stepped back into the city feeling that I could move forward in my journey with psoriasis as I turned toward home.

DisclosureThis post, and my travel to the event, was sponsored by AbbVie Inc., a biopharmaceutical company, and should not be construed to constitute medical advice. Personal opinions and thoughts are my own. I am not a medical professional and am not qualified to give medical advice. Please talk with your doctor about your individual medical situation. 

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Family, Living with Psoriasis

Why I Hate Asking for Help

This past week the pain in my shoulder landed on the chart somewhere between five and seven out of ten. I injured it in my exuberance to load my daughter’s new bicycle into the back of the CR-V. It’s nothing critical, but annoying enough that I can’t lift at certain angles or rotate in a full range of motion.

The primary impact of this pain in the shoulder is my inability to reach the upper middle part of my back. I normally stretch my arm to apply topical medications and moisturizers to those harder to reach spots. The psoriasis doesn’t pop out there as much, but recently my atopic dermatitis flared everywhere with the cold, winter-like weather here in Northern California.

Each morning and evening when I apply topicals I need to decide whether I will try to reach those spots myself or not.

I’m Going to Do it Myself

My attitude the entire week is to take care of myself—injury or not. In fact, I don’t want, or need, help.  The first couple times I tried to reach my upper back I winced. The next time, after sleeping on that shoulder, I yelped. I exacerbated the injury each time, too, which made me feel stupid and foolish.

One time I felt so much agony that I did ask my wife to apply moisturizer to my back. As she pulled her hand out of the jar of Cetaphil cream I immediately knew she had too much. Decades of applying creams trained me to extract just the right amount of cream or ointment for the skin surface area in question.

As an amateur she could not possibly know how much the skin on my back needed. But that was way too much. I thanked Lori. Then, once she left the room, quickly grabbed a towel to wipe off the excess moisturizer. My skin still felt greasy and uncomfortable after toweling it off a few times.

I determined to not ask her again.

Is There Another Way?

Last night my back became quite itchy with eczema rashes. I longed for a back scratcher but could not find one. I figured the primates at the zoo scratch each other’s backs, so I should at least see if Lori would scratch my back. But, alas, she fell fast asleep on the couch. I desperately needed to improvise.

The thirty-gram tube of hydrocortisone looked enticing. It gave me an extra few inches reach and had a not-too-sharp edge at the bottom. Like Job from the Bible scraping his boils with pottery shards, I soothed the itch on my upper back with that corner edge. Looking around to see if anyone observed my crude scratching technique, I put it down pretending like nothing happened.

My mind them began to brainstorm ways I could put medication and moisturizers on my back. I wondered aloud if anyone invented such a tool, and that if they had not, that maybe I could invent it. I thought, even without an injured shoulder, some people might not have the necessary flexibility and reach.

I’m still working on the perfect invention. If you know of some similar contraption let me know!

My Independent Streak Begins

Hurting my shoulder made it clear to me why I hate asking for help: pride and independence. I help others for a living as a pastor, husband, father, and friend. People message or call me to talk about or help solve problems. Mutual support is okay, but I believe that if you can do something yourself, then you absolutely should.

My streak of independence no doubt comes partly from necessity and parental training. My parents literally worked night and day to make ends meet as immigrants from China/Taiwan. My dad worked as an engineer in the day, then went to my mom’s small retail gift boutique in the evening to help with the family business. Mom worked seven days a week at “the store” for the better part of a decade after I started kindergarten.

As a latchkey kid I largely took care of myself, including applying my own medications. Back then, as an elementary student, I applied mild topical steroids and 2% LCD coal tar in Aquaphor on my psoriasis. My dad even taught me how to order medication by calling the pharmacy, and let me pick them up at the counter as he stood by to pay.

My strong sense of pride also derived from my desire to prove to others and myself that, despite having chronic illnesses, I could achieve great things with minimal support. I pride myself in hard work and perseverance no matter the obstacle. I earned good grades, and later advanced degrees, through consistency and determination.

This bum left shoulder, though, humbles me every time I need to reach those few square inches on my back.

Fine, I’ll Ask for Help

Now I’m determined to stop reinjuring my shoulder by overstretching its current limits. It needs rest, and it needs to heal. So, somewhat less reluctantly, I will ask my wife again for help after I take my shower.

The pain in my shoulder is a metaphor for life. Asking for help often connotes weakness, and no one wants to admit they are weak. Knowing when I need help, however, is true wisdom. Asking for support, while humbling, can lead to the greater good of intimacy through vulnerability. Reciprocity, when not demanded, becomes mutual care.

I also recognize I lose something when I don’t ask for help when I really do need it: the opportunity to connect on a deeper level with others. Sure I can do a lot by myself. But I lose out on sharing moments of triumph and loss, of joy and sorrow, and of journeyingup the tall mountain of life’s challenging peaks with friends who care.

Inspirational Verse: Galatians 6:2

Carry each other’s burdens, and in this way you will fulfill the law of Christ.

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