The “clever” Thanksgiving advertisement by FanDuel caught my attention immediately. It wasn’t because I love to watch sports or that I bet on games (I don’t). Rather, their stating of the odds of a family member mentioning their psoriasis at the family gathering felt off-putting as someone who has lived with it for most of my life.
As of today I hadn’t seen a response from FanDuel, but if I do I’ll amend this post. Regardless, I disagree that “everything in life is a bet,” as the commercial suggests. Thinking in these terms about others who have a serious chronic illness is insensitive and dark. Nor is it “TMI” to share about living with a chronic illness.
For much of my life I’ve fought the stigma that psoriasis is “just a rash” that is an annoyance to others.
I knew I wanted my annual flu shot. But I couldn’t decide on whether I really wanted to get another COVID vaccination.
To help make my decision I messaged my dermatologist the day before. I waited for the email notification that she had responded to my request for her medical advice. As of the time I left for CVS I had yet to hear back from her, but felt that she would say go ahead since we talked about getting boosted earlier in the year.
Making the Decision to Get the COVID Bivalent Booster
I didn’t get my second booster earlier this year even though I was eligible and encouraged to. I had the passing thought I might be immune to COVID already and didn’t need it.
I’ve had multiple known exposures to people who tested positive for COVID and never got it myself (unless I had an asymptomatic case). Most recently Lori had a bout that lasted a few weeks. I didn’t sleep in the living room until a couple of days after she started feeling unwell. Not getting COVD from Lori made me feel invincible.
Having psoriasis does not suppress my immune system either. But taking a biologic (monoclonal antibody) for psoriasis that modulates my immune system edges me into a potential higher risk group for more severe COVID symptoms. Asthma is a risk factor that I had to consider as well. Turning 50 years old makes me a candidate for a host of vaccines, including the bivalent COVID-19 booster.
Fearing Side Effects of the Vaccine
The first three Moderna jabs (initial two rounds and first booster) made me feel ill for two to three days each time. The side effects ranged from severe headache, stomach upset, sorest arm I can ever remember, sour joints throughout my body, brain fog, and low-grade fever.
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 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.” 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.
Today Lori and I are celebrating our 27th wedding anniversary. We hoped to go to Hawaii for our 25th, but then the pandemic changed our travel plans. A couple of years later we are still waiting to take that trip. Maybe it will become a 30th anniversary trip, but I hope it won’t be that long before we go.
We first me at the end of 1992 when I was looking for a co-leader for a Bible study I led off-campus with InterVarsity Christian Fellowship at UC Davis. As I look back I’m struck by how we bonded around our health journeys and how we’ve become advocates for each other and others in the community.
I wrote the excerpt below for an Everyday Health blog about five years ago. Many of my older blogs (some dating back to 2007) have been removed in an effort to boost traffic to their website. It pained me to see hundreds of my columns removed, but I thankfully do have drafts or copies of most of them.
This particular blog focused on ways Lori and I support each other with our health challenges. It’s still true today–we are each other’s care partners and greatest champions as we daily live with chronic illness and disability.