by Carolyn Thomas ♥ @HeartSisters
Let’s say you’re a woman recently diagnosed with heart disease who wants to know if it’s “normal” to feel crushing fatigue every time you take a shower. Or you’re a woman living with rheumatoid disease who needs advice on which shoes are best for people who suffer severe joint pain like yours. Or you’re a woman diagnosed with breast cancer who is trying to make sense of the new emotional extremes you’re struggling with.
Who you gonna call?
Unless your physician also happens to live with heart disease, or with rheumatoid arthritis, or with breast cancer, there are some questions that are best asked of others who, like you, are patients with lived experience of the same diagnosis.
As Susanna Fox once wrote for Pew Research, people living with serious medical conditions often go online in search of others with similar health concerns. She offers a simple explanation of what’s called peer-to-peer health care:
“Patients and caregivers know things — about themselves, about each other, about treatments — and they want to share what they know to help other people. Studies have shown that the more help someone receives, the more likely they will help someone else.”
“Patients say they will confide to others in these extended networks in ways that are sometimes hard to confide to their closest family members and friends. This is not new behavior, of course, as any member of Weight Watchers or a new mothers’ playgroup can attest.”
Please don’t misunderstand: our physicians are indeed our first-line resources for medical issues. I wouldn’t ask my girlfriends about managing the distressing symptoms of the coronary microvascular disease that I live with, any more than I would ask my doctors for advice on nutrition or parenting.
For the first question, I’d seek out credible experts like Registered Dietitians (who’ve spent five years studying food science). Where I live here on the west coast of Canada (a.k.a. “commie pinko land of socialized medicine”), we have a free 811 health education service where I can call a real live Registered Dietitian (who has spent five years studying food science, did I mention?) By comparison, the cardiologists I follow online cannot agree with each other on whether their patients should be on plant-based or keto diets. . .
For the second, I might seek a referral to a Family Counselor who has training and expertise in human behaviour (but let’s be frank – only if they’re also a parent). Realistically, I’d be far more likely to check out parenting blogs, my friends who are experienced parents, or online support groups where I can learn from other parents.
Each resource is uniquely useful, depending on the specific area of expertise. If I can learn from other people who have years, often decades, of lived experience dealing with practical issues that are common to my particular needs, I want to find those experts. See also: my 3-part series about online patient support communities.
It’s also why the persistent “Don’t Google It!” advice from some physicians is so tiresome. Surely these docs know that patients are already online seeking practical information and support – we aren’t going anywhere. As I tweeted recently:
“I wouldn’t buy a coffeemaker without Googling first to learn as much as I can about coffeemakers. Why would any physician believe I wouldn’t do the same for something as important as my health?”
Instead of warning patients not to seek out Dr. Google (a patently unrealistic demand), what physicians could be doing is to prepare a curated list of credible online resources to recommend, much like they’d pull out a prescription pad for a recommended drug. Direct those patients to solid information you trust, which will help to inform future doctor-patient conversations.
When I was invited by the University of British Columbia to speak at a medical conference in Vancouver a few years ago, I took the opportunity to ask the physicians in my audience how many were referring their current patients to online patient resources like blogs or support groups.
Dr. Kendall Ho, Professor of Emergency Medicine at UBC and Lead of Digital Emergency Medicine at Vancouver General Hospital (and also the physician who had personally invited me to come to Vancouver to speak that day) enthusiastically shot his hand up into the air. One vote for Heart Sisters!
Otherwise, my question was met by silence. No other hands were raised. But a few eyebrows were.
Yes, really! I insisted, and I invited them to consider a few slides featuring this example:
“If you have a patient living with breast cancer, and you are not referring her to Nancy Stordahl’s blog called “Nancy’s Point: A Blog About Breast Cancer, Loss and Survivorship“, you are doing her a disservice!“
I explained that Nancy is not only a breast cancer patient (who watched her own mother die of the same type of cancer she was soon to be diagnosed with herself), but she’s also the author of several books, including – best title ever! – Cancer Was Not a Gift and It Didn’t Make Me a Better Person“. Much different than the promising puffery of “conquering cancer” through the retail pinkwashing celebrated on major breast cancer sites, Nancy’s writing is both personal and respectful, but pulls no punches when she describes how frightening and overwhelming the reality of this awful diagnosis can feel for so many women.
On her blog, for example, patients facing breast cancer will find useful articles about how to manage what she calls the“cancer emotions“ that are never too far from the surface, or an open letter to plastic surgeons listing 13 things breast cancer patients want you to understand about breast reconstruction.
These are important topics you’re likely to find only on the pages of a breast cancer patient’s blog, as I reminded my audience of physicians.
Having done my best to recommend Nancy’s Point to them, I then added another slide:
“If you have a patient living with rheumatoid arthritis, and you are not referring her to Kelly O’Neill’s blog called RA Warrior, you are doing that patient a disservice!“
I showed them some slides featuring articles penned by Kelly, including one called “What’s Your Advice About Shoes for Rheumatoid Feet?” It turns out that choosing the right shoes can be a significant quality of life issue when you live with rheumatoid disease. As Kelly described her own tormented feet:
“The joints at the base of my toes swelled so that the toes themselves pointed in odd directions. Overnight, there were bunion-looking deformities on all four of the outside toes. The older ladies at church said, ‘Well, welcome to the club!”
Not only was this article packed with Kelly’s own recommendations and photos, but there are also dozens of helpful comments from her blog readers who have been forced to become experts on the subject of footwear for rheumatoid disease patients. And in Kelly’s intriguing article called “20 Things Not to Say to a Rheumatoid Arthritis Patient“, we learn that nobody (especially physicians) should ever say, “At least it’s not cancer…” In her “Working and Rheumatoid Arthritis” article, she offers helpful pointers for managing both workplace and symptom challenges, describing, for example, a woman whose boss refused to acknowledge obvious physical problems, adding “her boss makes her stand on her feet for hours doing a job which could be done while sitting.”
I also offered recommendations to my audience for other diagnosis-based patient blog resources and support groups, urging physicians to do what might seem completely foreign to most of them: encourage your patients to seek peer-to-peer healthcare.
Better yet, try asking your own patients which patient blogs and other resources they have found most helpful, and why.
Here’s one dead easy way that physicians can offer tangible support to their newly-diagnosed female heart patients, and the work’s already been done for you by WomenHeart: The National Coalition for Women with Heart Disease. They offer a free peer-support program called Sister Match – a one-to-one matching between your patient (by phone, email or in-person) and a Mayo Clinic-trained peer counselor who has completed WomenHeart Science & Leadership training at Mayo. Link to the Sister Match questionnaire for patients is below, under “See also”.
Speaking of Mayo Clinic, here’s another suggestion for physicians who’d like to float a trial balloon to see how this peer-to-peer support referral idea might work, just write down the Mayo Clinic link to ‘Patient Care and Health Information’ (www.mayoclinic.org/patient-care-and-health-information) on a prescription pad. This is a solid reputable resource covering the basics of symptoms, diagnostic tests, prevention, causes and treatment of hundreds of medical conditions, as well as an online support community called Mayo Clinic Connect, which offers peer-to-peer support from other patients, along with a team of Mayo Clinic moderators who maintain trustworthy content.
Doctors, please don’t be afraid to advise your patient – no matter what her diagnosis – to seek practical day-to-day tips from the people who know firsthand what it’s like to get through those days: other patients.
Physicians who still refuse to do this will be “doing that patient a disservice.“
And if you’re still interested in finding out if it’s “normal” for newly diagnosed heart patients to experience crushing fatigue while just taking a shower, you can find out more in this Heart Sisters blog article.
Q: What are some of your own recommendations for credible online patient resources?
NOTE FROM CAROLYN: I wrote much more about why we seek out other patients for support in my book, “A Woman’s Guide to Living with Heart Disease” . You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use the code HTWN to save 20% off the list price).
Image: Gerd Altmann, Pixabay
♥ The Truth About The ‘Your Googling And My Medical Degree’ Mug – a comprehensive article about why patients seek out Dr. Google (Society of Participatory Medicine’s site, written by Dave de Bronkart)
♥ WomenHeart: The National Coalition for Women With Heart Disease – an online support community of over 40,000 members worldwide – all women living with some form of heart disease. You can tell your story, ask (or answer) questions, just lurk in the background, it’s open 24/7 and free to join. Hosted by Inspire.
♥ WomenHeart also offers free peer-to-peer support through its Sister Match program, matching a newly-diagnosed female heart patient with a trained peer counselor who shares her diagnosis (everything from angina to heart attack or Spontaneous Coronary Artery Dissection (SCAD). Help can look like email, phone, or in-person conversations to help answer the many concerns new patients often have. Just complete the Sister Match Questionnaire to apply. By the way, does your cardiologist know about/refer female heart patients to Sister Match?
♥ Patient bloggers at healthcare conferences: ‘real’ journalists?
♥ Fun facts about my women’s heart blog
♥ Why you’ll listen to me – but not to your doctor