On the day that her doctor confirmed her diagnosis of Multiple Sclerosis (MS), Jamia Crockett recalls feeling “very removed” from her patient experience. Her response, in fact, is one that many patients living with any form of chronic, debilitating and progressive illness will find familiar – no matter what that ultimate diagnosis may be.
When the doctor told Jamia: “You’ve got MS”, she felt so removed that her first reaction to hearing these two letters was: “No, I don’t have an MS, I have an MHA!” (referring to her graduate degree in health administration).
As she explained to the audience attending the 2013 Medicine X conference at Stanford University in September, her initial response on that day eight years ago was:
“I’m NOT a patient!
“In my life experience, being a ‘patient’ comes from a place of weakness, with vulnerabilty and no control. And I’m a Type A personality in control of my surroundings, so when the diagnosis of MS was thrust upon me, I quickly rejected it and disconnected myself from the doctor.
“I went home and had a sandwich.”
Jamia was told she had MS back in 2005, but, like all other patients hearing a devastating diagnosis, that period of her life remains seared in her memory:
“I moved from the driver’s seat of my life and slipped into the passenger’s seat. I relinquished my type-A personality. I was now this small little person inside of a huge life that was filled with something that I didn’t know how to fight.”
As the doctor continued to give me more clinical information, I moved again from the passenger seat of my life to the back seat of my life. MS was driving the car now, I was but a mere passenger on a journey to nowhere.
“I finally moved once again to another place in the car that was my life. I was now in the trunk. A small dark place. No way in . . . no way out . . . sad and tragic. MS was in total control and I was curled up deep inside myself with nowhere to go.
“I went from the driver’s seat of my life to the trunk!”
That sense of disconnect may well be a survival mechanism to help us digest catastrophic news.
As I wrote here previously, a temporary period of denial can even be helpful. Being in denial when facing a life-altering health diagnosis gives our minds the opportunity to unconsciously absorb shocking or distressing information at a pace that won’t send us into a psychological tailspin.
For example, here’s a health scare scenario from Mayo Clinic that may seem familiar:
“After a traumatic event has occurred, you might need several days or weeks to fully process what has happened and come to grips with the challenges ahead.
“This type of denial can be a helpful response to stressful information. You initially deny the distressing problem. As your mind absorbs it, however, you can come to approach it more rationally over time.”
Dr. Marc Katz, a heart surgeon at Bon Secours Heart & Vascular Institute in Virginia, was also a speaker at Medicine X. Here’s how he described what often happens when people discover that they are now heart patients:
“When people are given a serious cardiac diagnosis, many just shut down.
“They’re scared to death, whether they admit it or not. They’re afraid they might keel over with the next step, or that whatever horrendous procedure I’m going to recommend will disable them for the rest of their lives.
“I try to communicate ‘Yes, this is a bad thing and I’m sorry you’re in this circumstance, but there are things we can do to help you.'”
No matter what well-meaning reassurances physicians may offer, however, the reality for many people is that time may ultimately be the only remedy for finally pulling us out of the trunk and back into that driver’s seat.
And if you’re a doctor, remember that even though patients hearing a life-changing diagnosis will see your lips moving, and will hear sounds coming out of your mouth, many patients will simply be incapable of comprehending what you’re trying to tell them at first.
When I was lying on an E.R. gurney, hearing for the first time the cardiologist’s words “You have significant heart disease” essentially froze my ability to understand anything else he continued to say to me.
Recently, I was transported back to those surreal moments while watching the final five minutes of the Tom Hanks movie, Captain Phillips. It’s based on the harrowing real-life story of an American cargo ship hijacked by Somali pirates in 2009. In the film’s final scene, Captain Phillips is taken to the ship’s infirmary to get checked over. If you’ve already seen the movie, you know instantly what’s coming. He is so overwhelmed by what’s just happened to him that he can barely make out what the medic is saying (she’s played with exquisite calm by a real medic, 24-year old Hospital Corpsman 2nd Class Danielle Albert). Although essentially unhurt physically, he seems so disoriented that he cannot even comprehend or respond to the routine questions she’s asking him. Then it all suddenly hits him. Although Hanks as Captain Phillips has remained a paragon of composure throughout his terrifying ordeal, he now begins to cry. And he can’t stop crying. And then I was crying right along with him, recalling my own inability to understand the E.R. staff who all seemed to be unintelligibly talking at me five years ago while I was in mid-heart attack.
Physicians and nurses need to pay close attention to this real-life emotional, mental and psychological trauma embodied in the whole person sitting or lying across from them – trauma that can morph all communication into a muffled and incomprehensible nightmare.
Here’s what would have helped both me and Captain Phillips: when confronting a shocked and stunned patient in the throes of such nightmares, health care providers might do well to follow Dr. Katz’s lead and say something like:
“We know this is terribly overwhelming and frightening for you right now. But you are in good hands. We’re going to take good care of you. It feels horrible right now for you, but we’ll all do our best to help you as much as possible.”
Meanwhile, suggestions from Mayo Clinic for patients to help get us past this post-diagnosis shock and denial include:
- Allow yourself to express your fears and emotions.
- Journal about your experience in writing.
- Open up to a trusted friend or loved one.
- Participate in a support group with other patients.
- Try to identify irrational beliefs about your situation.
- Learn as much as you can about your new diagnosis.
Jamia Crockett is like most patients who find out that eventually climbing back into life’s driver seat is indeed possible, no matter how bleak things may have looked back at the beginning:
“As a patient, I’ve learned that I do have a voice, that I can use it, and that there’s even power in being a patient. I’ve evolved from being a passive patient to a much louder, more engaged patient.
“Before this, I didn’t see the strength in how I could grow from this experience, but since my diagnosis eight years ago, I was able to get married, have two beautiful kids, finish my degree. If I’d thought ‘Oh my life is over’, I’d never have done all that.
“And I’m a pro-active patient now.”
- Say what? Do patients really hear what doctors tell them?
- Looking for meaning in a meaningless diagnosis
- Can denial ever be a good thing for heart patients?
- Why hearing the diagnosis can hurt worse than the heart attack
- How we adapt after a heart attack may depend on what we believe this diagnosis means
- When heart patients meet the Black Swan
- Denial and its deadly role in surviving a heart attack
- “To just be a person, and not a patient anymore”
Q: Can you relate to that sense of moving to the trunk from the driver’s seat of your life?