Here’s a news flash from the Prepared Patient forum of the Center For Advancing Health: your doctor is not a mind reader. And how you describe your symptoms can be just as important as what you describe. Physicians – and experienced heart patients – say you must be as detailed and descriptive as possible. For example:
- Adjectives are important. Don’t just call it pain. Use descriptive words like dull, throbbing, intense, burning, tingling, heavy or piercing. Sometimes ranking pain on a scale from one to 10 (with 10 the highest for example) can be a good way to track changes and severity of your discomfort.
- Describe how symptoms change your daily life and ability to function. Instead of just saying you feel “tired,” talk about specific changes in your day-to-day life. One heart patient, for example, explained that she had became too weak to use a blow-dryer and needed two hands to lift a glass of water. Rather than just telling your doctor “I can’t do things like I used to,” be very specific. Give context and explain any measurable differences in how you carry out daily activities.
- Be sure to give a location for your symptoms. Point to specific areas if necessary.
- Writing down your symptoms can help you remember everything you’re experiencing and make your time with the doctor more efficient. Some patients keep a symptoms diary to track a chronic illness like heart disease. Then you can tell the doctor specifics like: ‘I feel worse at night or whenever I walk up our steep driveway.”
- Be insistent about your symptoms if it feels like your physician isn’t clear on what you’re experiencing. Your doctor may have the technical knowledge, but only you can accurately describe the impact your symptoms have on your life. A recent report in the New England Journal of Medicine found several studies showing that doctors often downgrade the severity of patients’ self-reported symptoms, particularly when it comes to medication side effects. Keep a written record of the frequency and severity of your symptoms, so you can talk about them with certainty.
- You might be embarrassed in describing your symptoms – for example, if you fear you may be judged or criticized (when you’re a smoker, are obese, have allowed serious symptoms to go on for a long time, or are used to having your symptoms dismissed and are reluctant to keep on “making a fuss”). You could start the conversation with your doctor by saying something like:
“This is difficult for me to share with you but I need your help.”
Prepared Patients also reminds us of the importance of understanding two-way communication with your physician.
For example, Dr. Davis Liu, a family physician in Sacramento, California, advises:
“Doctors want to hear how you feel, not what you think your diagnosis is.
“Doctors are very specific with terminology, and what you mean could be completely different than what a doctor understands the term to mean.”
I would argue that the exception to this advice is when you are experiencing symptoms that feel like heart attack. In this case, call 911 and say loud and clear to anybody who will listen:
“I THINK I’M HAVING A HEART ATTACK!”
Dr. Catherine Kreatsoulas was a Fulbright Scholar at Harvard University when I interviewed her after she had presented her research at the Canadian Cardiovascular Congress in Vancouver. (1) Her studies was particularly appropriate to this topic.
I was surprised by her explanation on how some women describe their chest pain during a heart attack(2), as she told me:
“What we found fascinating in that study is that women would use a host of descriptive language to describe their heart attack symptoms, whereas men’s symptom vocabulary was generally more succinct.
“I cannot count the number of times I observed a physician leaning over a female heart patient prior to going for an angiogram, while asking: ‘So tell me about your chest pain’, and the woman very quick to respond:
“Well, I don’t really have chest pain. I have a discomfort, it’s more like pressing. I wouldn’t call it chest pain, I would describe it more as a bad ache.”
“And much to my amazement, I would observe the physician/resident record in the patient’s notes, ‘No CP’ – meaning no chest pain!
“We have no way of accurately estimating just how many patient charts have documented ‘No CP’ – when perhaps a more descriptive term for ‘chest pain’ expressed was used by the patient.”
This observation made sense to me, as I have frequently heard female heart attack survivors describe their own chest symptoms as “pressure, heaviness, fullness, tightness, aching, burning” – rather than with the word “pain”. See also: How Does it Really Feel to Have a Heart Attack? Women Survivors Answer That Question
If there is actually such a person working in medicine, it means we have a lot more work to do to help enlighten them before they misdiagnose us and send us home.
And if a symptom anywhere in the chest area is worrisome enough to propel a woman to seek emergency medical care, let’s not split hairs if it doesn’t look exactly like this:
Pictures like this in the media are, in my opinion, downright dangerous for women experiencing cardiac symptoms. They continue to perpetuate the misguided notion that THIS is what a heart attack always looks like – which would be a profoundly false notion.
Read the rest of the Prepared Patients essay called Talking About Symptoms With Your Health Care Team. Or for six detailed pointers on good communication at your next doctor’s visit (e.g. “Don’t Leave Until You Understand What To Do Next”) check the University of Minnesota’s Center for Spirituality & Healing.
1. Kreatsoulas, C. et al. “Reconstructing Angina: Cardiac Symptoms Are the Same in Women and Men.” JAMA Intern Med. 2013; 173(9):829-833.
2. Kreatsoulas C. et al. “The Symptomatic Tipping Point: Factors That Prompt Men and Women To Seek Medical Care”, Presented at the Canadian Cardiovascular Congress, October 2014. Canadian Journal of Cardiology Volume 30, Issue 10, Supplement, Page S132, October 2014.
NOTE FROM CAROLYN: I wrote much more about doctor-patient communication in my book, “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University, November 2017).
- When Doctors Can’t Say: “I Don’t Know”
- Words matter when we describe our heart attack symptoms
- Cardiac gender bias: we need less TALK and more WALK
- Six rules for navigating your next doctor’s appointment
- The ’18 Second Rule’: why your doctor missed your heart disease