We recently spoke with Jill Marshall, MD (name changed to protect identity), who works as an internist. “I unfortunately became a patient when I was 55-years-old,” she told us, “and I was diagnosed with breast cancer, a disease I had always feared I would get.”
Dr. Marshall was found to have multifocal disease and underwent a right mastectomy and lymph node dissection.
“Ever since I had seen mastectomies when I was in training, I dreaded ever having to get one,” she said. During the first week after her surgery, she began to feel a burning sensation in her arm, axilla, chest and back. Evaluation with electromyography and magnetic resonance imaging of the axilla and cervical spine were both unrevealing. The pain was presumed to be due to a chest wall nerve injury, and it progressed to the point where “it felt like a match was being lit to my arm and axilla and chest wall,” said Dr. Marshall.
This went on day after day. Dr. Marshall received 4 cycles of combination chemotherapy. “I had hoped the pain would stop after the chemo was done, but as time went on it was becoming clear I was now a chronic pain patient,” she said.
Dr. Marshall told us that she sank into a deep depression. “I kept hoping it would go away with time, but it went on and on and on. It just got worse and worse, but the worst was to realize that I just wanted to die. And I didn’t care that I might live and not get breast cancer again. The pain was just beyond anything that I could ever describe. I don’t know how I did it, I just don’t, except I had kids and I just had to. I mean, it was really extraordinarily depressing.”
She was treated with amitriptyline, duloxetine and nortriptyline, but they all caused side effects. The pain continued, so Dr. Meyer visited a pain center, where she was prescribed high doses of gabapentin. Although she was reluctant to take opiates, she finally allowed herself one acetaminophen-hydrocodone. But this had little effect on the pain. Then, escitalopram oxalate was recommended. She was doubtful, but in 3 days, she didn’t need the other medications.
Dr. Marshall told us that the pain didn’t disappear. Instead, she said, “I found I could live with the pain. I still do 6 years later.”
She explained that she now has varying amounts of pain every day but does not require narcotics. At baseline, it feels as if “someone were taking a plunger and pulling the skin of my chest, axilla and arm.” Every once in a while she gets a deep itch under her skin that she can’t scratch, which can last for hours. Despite this, she is able to work full time as an internist.
“The pain is always in the background, but repressible,” she explained. “There are days when I wake up and I’ll go, ‘I can’t believe this is my life.’ Especially the days where it comes back. I could be sitting at home on a Saturday reading the New York Times, just having finished my hot yoga class and all of a sudden it will start. This itch, nerve pain, burn. And it will go on for hours. There are good days and bad, but I know—I had to accept—that I will never go back to the old life where my body felt normal. It’ll never be like that. And I’ve learned how to accept that. I have a whole new perspective on life.”
People have an extraordinary capacity to adapt. What we first imagine to be severely limiting can prove to be less destructive to quality of life because we can find other sources of gratification. Many of us adapt to difficult and debilitating situations to a degree that surprises us. Research shows that patients paralyzed by accidents or by degenerative neurological disorders, some 2 years after losing motor function, often consider themselves as happy as they were before their illness. People with a colostomy, a change that is typically viewed with dread, often reclaim a sense of happiness similar to that before their colon was removed.
We tend to underestimate our resilience. Over time, we learn to expand those parts of life that still give us pleasure and seek fulfillment in venues we had previously overlooked.
Like most internists, Dr. Marshall had taken care of patients with chronic pain syndrome. “I found them, I thought, to be a certain type of person,” she said. “And I was pejorative. I made judgments. I didn’t let them know that, I was still able to be a good doctor for them, but I looked askew. They were weak or head cases or had addictive personalities. I always felt sure I would never succumb to such a malady since I considered myself ‘tough.’”
All of us as physicians are susceptible to such attribution errors, relying on stereotypes that can color our thinking. These pejorative perceptions about patients with chronic pain are particularly widespread.
Dr. Marshall told us she has been humbled about chronic pain. “I have experienced so much as a patient, myself, that I can really understand my patients, not just sympathetically, but empathetically. ‘I’ve been there, I know what you’re feeling,’ especially the pain patients. There’s a level of comfort there between the two of us.”
Still, Dr. Marshall is cautious about sharing her personal medical history. “I try not to break the boundaries [by] talking about myself to my patients, but at times I think it’s therapeutic for me to share some of what I’ve been through so they know that I understand. There’s always that fine line. I don’t want it to be about me, they’re the one who is the patient. But, you know, when they see or know that I’ve been where they are, I think it really does help a lot of them.”
Above all, Dr. Marshall’s goal is to provide hope. She explained, “I try to help my patients step back into life.”
Jerome Groopman, a hematologist-oncologist and endocrinologist, and Pamela Hartzband are staff physicians at Boston’s Beth Israel Deaconess Medical Center. They are authors of Your Medical Mind: How to Decide What Is Right for You. This article was originally published in ACP Internist.