Doctor and Patient: Dr. Moyer Shares the Importance of Self-Management While Living with Lupus

When tasked with discussing lupus self-management, I found myself torn between the perspectives of a lupus patient and that of a budding rheumatologist. My journey as a patient began at 14 when I was diagnosed with severe neuropsychiatric lupus, which was ultimately made manageable after an autologous stem cell transplant.

What could I say from the patient’s perspective about lupus self-management? I started this journey as a psychotic teenager who hated prednisone; self-management initially was not my forte.

What if I addressed this topic from a rheumatologist’s standpoint? Soon I will complete an internal medicine-pediatrics (med-peds) rheumatology fellowship. From this perspective, self-care is “simple”: take your medication, follow up with your doctors, avoid stress, exercise, eat right, get plenty of sleep, limit sun exposure and wear sunscreen. Making the list is easy, but helping a sick teenager is more complicated. I asked myself, what helped me transform from a not-so-compliant teenager into a physician treating lupus patients? My answer lies in turning a “weakness” into a superpower.

Embrace Your Path
Here are some caveats to keep in mind. I have been blessed with built-in support from my family and friends. I am acutely aware of this fact, which guides how I care for my patients. I know this will not apply to everyone but want to share what works for me and could possibly work for you.

Balancing Act
I took precautions throughout my medical training. I strategically balanced easier and more challenging rotations and openly discussed my condition with colleagues/supervisors to ensure coverage during my treatments. During the peak of flu season, I either avoided working in the pediatric ER or wore a mask. Establishing myself as a diligent worker and effective communicator proved crucial. Because of that, colleagues quickly offered support when I needed bilateral hip replacements in residency. My success is built on a foundation of planning, effective communication, and a strong support system.  While many choose to keep their personal health private, I don’t think I would have been successful had I kept my diagnosis to myself.

Origin Story
I had the benefit of gifted medical physicians who were compassionate, dedicated, and   communicated with my support system when I couldn't manage my care. One of my most impactful relationships was with my stem cell transplant nurse, who was undergoing treatment for breast cancer when I first met her – though I wouldn’t have known if she hadn’t told me. She lost her hair shortly before I did and was full of tips and I trusted and connected with her, largely because she had shared her personal experience.  I later realized that my nurse profoundly impacted how I practice medicine. I strive to be the type of healthcare provider and person I needed when I was at my sickest, which helped me realize that my experience with lupus is a superpower.

My Superpower
I routinely share aspects of my journey with patients – including the mistakes I made that led to lupus flares (i.e., not taking my prednisone when I needed it, denial, and a spectacular sunburn).  I have never experienced a negative consequence from disclosing. Sharing improves the trust patients and families have in me and strengthens the alliance with the medical team. Lupus is my superpower, and I am confident that sharing my experience has prevented morbidity and even mortality.  A personal experience can enhance the therapeutic bond with a patient, even if you don't share the same illness. Many of you may recall the uncertainty and early morning lab draws during hospitalization or the anxiety, hunger, and insomnia induced by temporary high-dose steroids. It helps when you know your doctor has experienced the same.

Conversely, one thing I’ve learned is to avoid directly comparing my personal situation to those of my patients. The unintended consequence might be to cause the patient to feel inadequate, so it’s important to recognize that everyone’s situation is unique. As a doctor, I aim to acknowledge their distinct experiences, and I avoid phrases like: “I understand what you are going through” or “I know how you are feeling.” Here are a few phrases I use instead when building an alliance with a patient or family.

• “Would it be okay if I shared something about myself?”
• “I know this is not the same, but when I was diagnosed, I remember……”
• “When I took this medication, I felt……”

Sharing my experience benefits my patients, brings me joy, and gives meaning to my past struggles. The sooner I can get people on board with treatment recommendations, the easier my job is and the better their outcomes are. Authenticity, strategic planning, open communication, and embracing my superpower have been my allies. Transform your perceived vulnerabilities into strengths! I think you'll be pleasantly surprised by the support, engagement, and unity that sharing can foster.