“To live in our hands humbles our mind into accepting something other than itself. It is how we heal each other and ourselves. We all come alive through a Braille of heart.” – Mark Nepo
Physical touch is one of the most important ways we communicate our love, care, and affection to the people who share our lives. A warm hand on a colleague’s shoulder, a delicate finger down the tiny slope of a baby’s nose, a cupped palm fitted to a lover’s cheek. These tactile gifts of loving kindness speak volumes between the giver and the recipient without having to utter a single word.
When I was diagnosed with palmoplantar psoriasis in my late 20s, my relationship with my husband, Aaron, was in its infancy. Like most young couples, physical attraction and touch were a fundamental aspect of our coming together. It was infatuating and exhilarating. But as we fumbled and tumbled through the early days of falling in love, the skin on the palms of my hands and the soles of my feet began to deteriorate into painful, swollen cracks and fissures that would plague me (and him) for many years to come. Significant functional disability because of palmoplantar psoriasis and the onset of other related chronic inflammatory conditions became an integral storyline for us that still sometimes pierces the pages of our day-to-day.
Fog of Disease and Distance
Living and coping with psoriasis can be a lonely, isolating experience for both the patient and the significant other, even within the confines of a loving relationship. For me, chronic pain and fatigue, shame, and embarrassment about my skin became like a third party living between us, interrupting the natural flow of honest communication, intimacy, and togetherness. As my psoriasis and self-image worsened and unhealthy coping mechanisms began to take root, a pervasive fog of disease and distance settled in around us and became a way of life. I learned to simply survive, and he learned how to navigate the foamy swells of my difficult emotions while also stoically managing his own.
Together, we carried psoriasis through our wedding, our vacations, our holidays, and our family gatherings. I on my hands and feet and he on his heart and mind. Even simply holding hands was once an awkward strain with my raw, throbbing palms and ever-present layer of greasy steroidal ointment. For many years, the essential flames of joy and spontaneity choked and sputtered in a light rain under my broken umbrella as I searched for treatments and relief.
Shelter in Community
In time, I found shelter in a healing community of physician partners and patient friends. I found improved treatments that provided relief, discovered the power of health advocacy, and earned a deep understanding of how my overall health affects the quality of my life, as well as the well-being of those I love. Aaron has been beside me every step of the way. His quiet patience and humble caretaking helped pave the path of compassion and compromise that is a long and winding marriage.
Over the years, the braiding together of intimacy and vulnerability, communication and withholding, and fear and trust has layered a rich patina of humility and resilience onto us both – a shared second skin, the contours and colors of which only we alone can know. And while I wish it could have been easier for us at times, more than 20 years on I am grateful for the lessons of courage and perseverance that define the tenderness of our living narrative. His love and commitment have allowed me to find my voice for sometimes painful truth telling and setting of healthy boundaries, which in turn have allowed me to love him in more and more unconditional and selfless ways. Through individual and couples therapy, we are healing and have learned new and better ways of relating. As it turns out, the lessons of living and loving with psoriasis and other chronic conditions are as universal as love itself. Trust, honesty, forgiveness, and respect for each other – and for ourselves – must go hand-in-hand.
Photo Credit: Ol'ga Vostruhina / EyeEm via Getty Images
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