As a doctor’s daughter, I always considered myself immune to “white-coat syndrome” -- the anxiety and elevated blood pressure that some people experience in a clinical setting or in anticipation of seeing the doctor. After all, I saw my dad in scrubs and a white coat every day as he migrated between home and hospital. His way of life was our life, and it felt normal.
But in my mid-20s, when the palms of my hands and soles of my feet began to swell, crack, and bleed and my quality of life took a nosedive, I began to understand the fear, frustration, and "physician fatigue" that can accompany chronic inflammatory disease. And only now, in my 40s, do I fully appreciate the personal agency, mutual respect, and thoughtful inquiry required to build and maintain a meaningful patient-doctor relationship.
My mom has psoriasis, so we didn’t have to stretch for a quick at-home diagnosis of palmar-plantar psoriasis. But it would take many years and an exhausting succession of dermatologists and treatments before I found a physician-partner who helped me take control of my health and learn to live well within the parameters of the disease. Trial and error is never fun when you’re trying to treat and heal chronic conditions. It is even less fun when doctors make you feel more like an experiment than a person.
Thankfully, I did finally find a doctor who treated me like a person -- and a partner -- and that relationship made all the difference. Here’s what I learned along the way:
Seek expert care if you can. It may seem like a lost cause right now but, do your homework and seek a known expert, even if it means more research, more diligence, or more travel time. Even on those days when it feels you don't have the energy to push for better care, your health and freedom from pain are worth spending that energy to go the extra mile.
In the early days of my diagnosis, I wasted so much time in the wrong waiting rooms with hope as my only plan. In time, through the National Psoriasis Foundation, I found a dermatologist who spends 80% of her day with clinical patients (not cosmetic) and specializes in psoriasis. She is a frequent lecturer on psoriatic disease, authors articles on niche disease states, and serves in a number of leadership positions with health advocacy groups and hospital systems. She is aware of the latest treatments and side effects, related conditions and comorbidities, and evolving standards of care. She “gets” psoriasis, and by extension, she gets me.
Compassion is a must-have, not a nice-to-have. The first thing my doctor did when she looked at my hands and feet was put her hand on my shoulder and say, “You must be in so much pain.” She was the first health care professional to acknowledge the burden of the disease, and it was an awakening for me. I immediately felt seen and heard and began to trust again after so many failed treatments and dead ends. I was no longer an experiment to be proven. I was a young woman in a health crisis, trying to manage the rollercoaster of my 20s along with a debilitating, chronic disease. Compassion is an essential element of any intimate relationship, and we can all cultivate it.
Take responsibility for your health. Be honest and learn how to take care of yourself. It’s one of the best ways to be in right relationship with your doctor. Quality health care is a two-way street where the patient and the doctor work in concert to find answers and create solutions. Our bodies are complicated systems that require preventive maintenance, and sometimes pharmaceutical or surgical intervention. Personal responsibility and honesty play a critical role in determining positive health outcomes. For me, that meant getting serious about all the things I was doing (or not doing) to sabotage my health and healing. It also meant preparing myself for appointments by educating myself and knowing the right questions to ask.
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