Managing Chronic Illness—Keeping Calm and Carrying On

AUTHOR KIERAN LOUGHNEY, chillaxing with partner, Patti. Photo credit: K. Loughney.

By Kieran Loughney

Lying on her back in deep snow, my partner Patti flung handfuls of the fresh powder into the air, letting the flakes land gently on her beaming face. She’d later tell a friend it was the best day she’d had in a year. To witness a joyful moment brighten the face of a loved one is a comforting affirmation of their well-being and happiness. To see someone with a chronic illness enjoy such an experience is to see hard-earned pleasure.

Millions of Americans face each day knowing that their medical conditions may never improve. Among the afflicted are those with autoimmune disease (AD). The immune system, meant to guard against bacteria and viruses, senses foreign invaders and sends out cells to attack them. In patients with AD, the immune system mistakes joints, skin, tissue, even organs as foreign, releasing proteins which attack healthy cells. One form of AD is type 1 diabetes. Though my relative lives with that challenging illness I’ve learned lately there are other forms of AD, such as Lupus and Sjogren’s Syndrome, which also wreak havoc upon the body.

On a recent trip out of town we woke to a surprise snowstorm. We marveled at its beauty and the energy we felt after frolicking in the fresh drifts. Patti has struggled with AD for more than a decade. Sjogren’s Syndrome transformed her life, the autonomic neuropathy causing, among other problems, unrelenting physical pain and nausea. Seeing snowflakes melt on her smiling face had, for me, a special poignance.

As her primary caregiver, I’ve watched Patti persevere as her physical state has deteriorated. It’s heartbreaking to see how much this illness has robbed from Patti. The disease diminished her eyesight, forcing an abrupt end to her magazine career. Patti excelled as an editor in chief with unshakeable journalistic integrity. Once blessed with boundless energy, her sturdy work ethic nurtured from an early age, Patti now chafes at her diminished abilities, and misses her colleagues and the chance to continue their meaningful work. Her legacy of vital, hard-hitting reportage includes early coverage of the Taliban’s oppression of girls in Afghanistan, the Matthew Shepard hate crime murder, and breaking fashion barriers in Seventeen Magazine by including models of different body types and ethnicities.

Together, Patti and I exist in a constant state of adjustment, as do the hundreds of thousands of others in the same position. Many have it much worse, as Patti is often quick to point out. In dozens of ways, from where we live, to being financially secure and mentally acute, we are very blessed. Even so, just one of the more troubling characteristics of Sjogren’s Syndrome is its unpredictability. The disease can randomly attack various body parts. Patti presses on, though, remaining as active as possible, managing her medical appointments, doing a little editing (most often of my work) and juggling finances.

I spent a career helping people with a range of physical and mental challenges and became skilled at managing difficult situations. I now comprehend how emotionally demanding it is when the person requiring help is one’s partner. I ponder the hardship Patti would face if I were ill myself. And I wonder what fresh hell may be in store as the disease persists. But I refuse to give up hope while wrestling with worries. After all, this illness could go into remission, and advances in research could result in more effective treatment. I’m optimistic by nature and know that if any effective treatment exists, her dedicated doctors will find it. My Irish tendency to find the humor in stressful situations helps relieve the tension. Though my jokes may not always land, I’ve managed to avoid taking anything too seriously and try to lighten the mood whenever possible. Patti and I find plenty to curse about too, of course, but while seeing the ridiculousness of our situation we often end up having a cathartic laugh together.

Patti recognized a little-used talent of mine early on, encouraging and inspiring me to write. We shared the small triumph of buying my first essay in print at a newsstand near our building. Before the pandemic, the city was our playground. We strolled city parks from Roosevelt Island to The Battery, were awed by the treasures from the Cloisters to the Met, and thrilled to dance at the Joyce and music at Lincoln Center.

Though life in the COVID era has shrunken our world, we’re grateful to live in a diverse, creative and ever-evolving place—a city that never gives up. Through it all, Patti has been fiercely protective of me, taking a keen interest in my well-being and safety—and my happiness, often anticipating my needs before I do. I can’t imagine a more loyal and caring partner to share my life with during these uncertain times.

That’s not to say that I don’t become discouraged, annoyed and frustrated. We’ve endured incalculable hours listening to canned music and robotic voices thanking us for our patience while waiting for medical staff to respond to our phone calls. COVID has worsened this. We’ve felt the insanity of managing a Kafkaesque insurance maze when seeking coverage for procedures, specialists, or medication. I’ve shared Patti’s anger when we’ve been forced to search for medication that is scarce and costly or not even available.

Patti fondly recalls the attention she received as a patient at the defunct St. Vincent’s Hospital. The staff came to know her well, joking with her about accumulating frequent flyer points. Having a hospital in the neighborhood added a level of security. The need for this is urgent. With COVID long-haulers, thousands more patients are being treated for chronic conditions. I’ve got my own health concerns, and I’m hopeful that recent news of a planned new hospital opening in the West Village nearby pans out.

I love Patti and am privileged to be her partner in this struggle. But there are moments when watching her bear so much suffering is gut-wrenching. Episodes when symptoms intensify and persist for weeks drive her to desperate, self-destructive thoughts. She knows I share her distress and encourages me to take a break. To relax, I wander, usually with no set destination, among the brownstones, past al fresco dining and boutique windows on Bleecker Street, and beyond the joggers, tourists, and expansive views along Hudson River Park. I tune in to the vibrant pulse of life in the West Village. Sometimes I take a contemplative stroll through the Whitney. I encounter neighborhood friends who ask, “How is Patti?” and offer help and prayers. I know they’re sincere. They’ve shown us real support, checking in on Patti, running errands or helping her get to appointments when I cannot be available. Afterwards I’m uplifted, and feel that I’ve got more to offer.

I left my hometown as a young man, following an impulse to be independent. I spent my young adulthood pursuing the ideal of living free of cares or commitment. My experience with Patti has shown that I’m only as free as my body lets me be, and taught me to value what health and mobility I’m granted. I know, also, that Patti and I are part of a community in the West Village—surprising to those who don’t live in New York—that cares for one another and that, when one of us is struggling, is committed to helping. We live down the hall, or an elevator ride or short walk away from one another. The women upstairs can’t do enough, nor can our neighbor two doors away. This proximity bonds us in a manner that would be less likely in a suburban setting. That shared concern among family, kind neighbors, smart doctors and nurses—even the local pharmacist and staff—demonstrates the beauty of interdependence.

In the evening, before I begin cooking dinner, I tell Patti of our friends’ good wishes. I cue some music and hold Patti close and we comfort each other. Both of us tear up a little. We dance, as we often do—like the time recently, when we danced as Sarah Vaughn sang Come Rain or Come Shine.

“…I’m with you always, I’m with you—rain or shine.” Or snow.

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