Reflecting on my health, one of the most challenging experiences I faced as a patient was losing my primary care provider. Physical and mental health are continuously challenged when you are diagnosed with a chronic disease. For me, being diagnosed with fibromuscular dysplasia (FMD) and Ehlers-Danlos Syndrome was complicated with another diagnosis—median arcuate ligament syndrome (MALS). Not only is MALS a diagnosis of last resort, but it is also controversial as many health care providers do not believe in its existence–it took two decades to figure out what was causing my symptoms! My MALS was validated upon diagnosis of FMD, when they discovered that the celiac artery—the artery that supplies the vital organs and gut—was significantly blocked due to a ligament cutting off blood supply to my abdomen. The treatment for this condition is surgery.
It took me three years to gather the courage to consult a vascular surgeon. My reluctance was met with the fact that I have fragile arteries, and I feared the surgery would cause my small brain aneurysms to rupture. “What ifs” plagued my mind, but realizing that my health was deteriorating, and malnutrition was setting in, I met with my vascular surgeon. I explained my fears, asked him questions which he diligently answered, and we scheduled my surgery.
I arranged the pre-op appointment with my primary care physician who was a consulting doctor on my team of neurologists, vascular doctors, nephrologists, cardiologists, gastroenterologists, and genetics specialists. Due to changes in the medical team she became my primary care provider, and has seen me through my rare disease diagnosis, through research at the National Institute of Health, and now, as I faced open vascular surgery. Our physician-patient relationship had been established for about a decade at that point. She had trust in me as a patient, as much as I had confidence in her as my physician.
The surgery was a success, and recovery took about a year. However, my symptoms returned, and three years later I faced another surgery, this time exploratory in nature–my bypass graft was revised and scar tissue was removed. I met each setback, knowing my primary care doctor was by my side—we celebrated my successes, and we cried together when life was too much to bear.
My most difficult experience was saying goodbye to her several years ago. Her life was changing, and for reasons beyond her control, patient care would no longer be possible.
How does one grieve the loss of a physician, your health care cheerleader, your confidante? Health care providers argue that you cannot become involved in patients’ lives, and that patients must understand boundaries in the provider-patient relationship. Nevertheless, we do form relationships, and it is normal to grieve the loss of any relationship, especially when you have shared decades of experiences. I went through the same stages of grief that I would with the death of a family member or a close friend.
Depression and despair can set in as you realize a situation cannot change. For a patient, fear and the “what ifs” set in—what if the doctor does not believe in my pain; what if his or her style of care is not patient-focused; what if I lose control over the quality of life I have worked so hard to achieve?
Eventually, acceptance of loss does happen, and the experience of knowing what makes a good provider helps in establishing your next provider. “What if” statements are replaced with “I will” statements:
- I will now expect my doctor to treat me as a team member who can make educated decisions along with their expert guidance.
- I will communicate my expectations to my next provider, and ask how we can achieve goals together.
- I will respect my provider’s thoughts and appreciate his/her wisdom, as without it I cannot make informed choices about my care.
- I will therefore, acknowledge differences, and be patient in developing a patient-centered partnership.
As with most things in life, we must give them time to grow and develop. I will always hold what my primary care doctor gave me, close to my heart—her gift of medicine and healing—the most cherished gift I have received.
Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.
About the author: Kari Ulrich is a volunteer mentor for Mayo Clinic Connect, in addition to serving on the Board of Trustees for The Naeve Health Care Foundation. She is a part-time student working towards her BSN. Before her diagnosis, she worked as a RN and has both pediatric and adult emergency room experience. For her 50th birthday, she started taking western pleasure horseback riding lessons with the goal of competing in a show someday.