Category Archives: Living with Psoriasis

chronic illness, Living with Psoriasis, Personal Faith

December: Questions Upon Questions (Four Seasons of Healing)

Note: This is entry 1 in a study guide series called “Four Seasons of Healing: A Pathway for Those Living with Chronic Illness” covering the introduction to Winter and December: Questions Upon Questions.

For a list of entries click here.

Part I: Winter (December to February)

My soul is in deep anguish. How long, LORD, how long?  (Psalm 6:3)

Shortened days with darkened skies mark the winter season. Punishing storms reshape the landscape, eroding surface features through harsh winds and rivers of rain. 

The winter of a long trial such as chronic illness marks its arrival with an initial diagnosis or flare-ups of old symptoms. Like a strong downpour on a dusty desert floor, everything in life that is not securely grounded and rooted gives way to a barrage of uncertainties in this dark season. 

Yet winter exhibits its own beauty. The moonlight striking a snow-covered hillside, or a cleansing rain, reminds the soul of life’s rhythms and cycles. The desert cactus points to a creative force that adapts to the harshest conditions. Those living with chronic illness need not run from winter, but rather wait for God to reveal His amazing power in the midst of even the greatest storms.

December: Questions Upon Questions (Psalm 13)

Psalm 13:1-4

How long, Lord? Will you forget me forever?
    How long will you hide your face from me?
2 How long must I wrestle with my thoughts
    and day after day have sorrow in my heart?
    How long will my enemy triumph over me?

3 Look on me and answer, Lord my God.
    Give light to my eyes, or I will sleep in death,
4 and my enemy will say, “I have overcome him,”
    and my foes will rejoice when I fall.

Devotional

In a winter of the soul the psalmist asks the Lord in despair, “Will you forget me forever?” Questions stirred from this winter season range from “why me?” to “how long?” He feels the depth of his pain even though his God is close by listening to his lament. His troubled thoughts remain from the time he wakes to the last sight of his eyes before he sleeps. God does not provide the answers the psalmist seeks in the time he feels he needs them. Instead, he feels like death is around the corner.

I can think of a couple of periods in my life where I sat in the silence and despair of winter like the author of Psalm 13. One time, during my second year at the University of California, Davis, old treatments failed. New treatments meant liver biopsies and debilitating gastrointestinal distress. Another time, in the mid-2000s, I experienced a massive flare-up of symptoms where psoriasis covered over 95% of my body. The top layer of skin on the soles of my feet and palms of my hands painfully peeled—a side effect of psoriasis medications. Those were times when I felt overwhelmed with ongoing anxiety and insomnia. I once again asked God those questions I first posed as a teenager.

God can handle any questions that come His way from a sincere heart saddled with anguish. Indeed, Jesus Himself cried out on the Cross, “My God, my God, why have you forsaken me?” (Matthew 27:46). Being honest and open about those questions begins the healing process.

Opener

Share one way you, or someone you know, has endured something unpleasant or painful over an extended period of time. What questions, if any, were raised in that situation?

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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.

Disclosure: This 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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