I vaguely recall my gurney being wheeled very quickly down a wide hospital corridor after I heard the words “heart attack” from the cardiologist who had been called to the E.R. I stared up at the ceiling lights flicking by overhead, feeling strangely calm. Here’s what I recall thinking in my strangely calm state: when I’d first come into this same E.R. two weeks earlier, scared that my symptoms of chest pain, nausea, sweating and pain down my left arm might be due to a heart attack, I had been right!
These symptoms had never been because I was “in the right demographic for acid reflux” (despite what the Emergency physician who’d sent me home that first day had confidently pronounced). But now, after two weeks of increasingly horrific symptoms, popping Gaviscon like candy, I just felt relieved that all of the people around me now would know how to take care of me. The shock of hearing my new (correct) diagnosis of heart attack was subsumed in that moment by a wave of profound relief.
How could anybody feel relieved when getting such a serious diagnosis?
Turns out that there is one kind of patient for whom relief might be a common reaction: if you’ve been misdiagnosed, or undiagnosed, or spent any length of time wondering why the worrying symptoms you’re experiencing are being dismissed as “normal”, finally hearing an accurate diagnosis can feel like a relief.
Sharon Roman had her own first debilitating symptoms at age 30. As she wrote in the BMJ about hearing her own life-altering diagnosis of multiple sclerosis:
“A diagnosis can be a revelation to patients. The pieces of the puzzle finally fit to form a picture. It brings a sense of relief; they have not been imagining or exaggerating their various symptoms. Although it’s a short-lived relief, as other emotions begin to tumble into the now vacant space: fear, anger perhaps at having felt trivialized, and more. It may even bring a sense of closure to the vicious game of chase with an unknown ‘it.’ At last, they are believable.”
For those who have been misdiagnosed, who know that something is terribly wrong, who fear that nobody will be able to help relieve their suffering, an accurate diagnosis is indeed a relief because without it, there can be no treatment plan.
It was a phone call that brought a serious diagnosis to Betsy Ahlers, a nurse who wrote about waiting for her test results to come back:
“It was a double-edged sword. Either I would get a diagnosis, which I wanted but would still be scared, or the test would lead nowhere, not be definitive, and leave me still searching, still not knowing.
“After a long week of waiting, the labs came in and I received the call. Even though it wasn’t a surprise, I was shaky and shell-shocked. And relieved. I cried. Not because I had something, but because I had something. There was a reason — a proven medical diagnosis to explains all my bad days, pain, symptoms.
This time, I didn’t hear, “Sorry, we don’t have an answer.” This time, they knew. And now I know.“
It’s important to keep in mind that feeling temporarily relieved – especially if an accurate diagnosis has been a long time coming – doesn’t ever minimize the reality of that diagnosis. With a chronic and progressive illness like heart disease, it can mean a significant adjustment to this diagnosis and then to a whole new way of life. (See also: The new country called Heart Disease)
It may come as a surprise to some physicians that relief can actually be one of the initial responses to this news. Here’s my favourite example of this: when I worked in hospice palliative care, twice a year our physicians taught an intensive one-week course to other health care professionals on end-of-life care. A very popular topic was called How To Break Bad News. One of the course instructors told us this story about his earliest experience as a young doctor charged with delivering a diagnosis of brain cancer to a patient. He felt nervous as he approached the woman waiting quietly for him in his office. He wasn’t sure exactly how to say this, or what to expect from her after he said it. Somehow, he screwed up his courage and managed to get out the bad news as best he could, but was shocked when the woman smiled, stood up from her chair, and gave him a hug. “Thank you!” she said. “I was convinced that my symptoms meant you were going to tell me I was losing my mind!”
Whether a diagnosis is met by relief or by despair, continuing this doctor-patient communication about the diagnosis as kindly and thoroughly as possible is important because relief can quickly morph into fear as reality sinks in.
Clarice Bromley recalls how relieved she felt after years of suffering severe symptoms that turned out to be a rare hereditary connective tissue condition known as Ehlers-Danlos syndrome. That relief was only temporary:
“I remember when I finally got diagnosed by a rheumatologist, I sat there and cried in relief. But for anyone searching for a diagnosis, please do not rely on that diagnosis as the be-all and the end-all of your problems, like I did. Of course diagnosis opens other doors to be investigated, but having a diagnosis didn’t make things any easier.”
Are you a healthcare professional who has to break the bad news of a serious diagnosis? Sharon Roman has this helpful advice for you:
“It’s worth remembering that your words and this moment will last a lifetime, so make the effort. You can never take back this one time, this life-changing moment for the patient.
“While it may have been a long day for you, it will be an even longer one for your patient.
“On the phone, please dial my number yourself, be the first voice I hear, and have my file already in front of you. If you are cold and hard, the news will be harsher.
“In person, be mindful of your body language and soften your words with your posture. Before you utter a sound, think about what you are saying to your patient and where you are saying it from. As busy as you may be, don’t let being rushed show. If the setting allows, come back to check in before you leave; you can be a constant in a new world of uncertainty – even if it is for just one day.
If you are referring a patient, assurance in the new doctor goes a long way. Let them know that they will be in good hands. Write down the name of the diagnosis (“I have a what . . . ?!”). Have some information at hand, if possible, along with a list of reliable resources for more information. Offer the name of an organization that can offer links to support groups and other trustworthy, helpful sources. (Carolyn’s note: Docs, please tell your female heart patients about WomenHeart: The National Coalition for Women with Heart Disease; they offer a large online support community, in-person local support groups, and scheduled virtual support group meetings; all are for any woman living with any form of heart disease, and are free to join).
“I don’t need a hug, but I do ask for solicitude and compassion. I am more than just a patient. I am a person, a daughter, a wife, a sister, an aunt, and a friend.”
I wrote more about how hearing a life-altering diagnosis can impact heart patients in my new book, “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University, November 2017).
Q: Has an odd sense of relief ever been your reaction to hearing a diagnosis?
- How we adapt after a heart attack depends on what we believe the diagnosis means
- My medical diagnosis means more to me than to you
- When a serious diagnosis makes you feel mad as hell
- Looking for meaning in a meaningless diagnosis
- Heart attack misdiagnosis in women