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 foot 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 daily, any more than I would ask my doctors for advice on nutrition or parenting.
For the first question (nutrition), 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 (parenting), I’d 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). And realistically, I’d be far more likely to check out my friends who are experienced parents, or parenting blogs, or online support groups where I can learn from other experienced 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. . .”
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 and credible support to their newly-diagnosed female heart patients, and the work’s already been done for you. It’s 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.
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 patient 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 also 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 unaware that newly diagnosed heart patients often experience crushing fatigue while just taking a shower, you can find out more in this Heart Sisters blog article.
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Q: What are some of your own recommendations for credible online patient resources?
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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 30% off the list price).
Image: Gerd Altmann, Pixabay
See also:
♥ 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. 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
♥ A Woman’s Guide to Living With Heart Disease: my blog-turned-book project
Heart Sisters 
Great advice, Carolyn, as always! I have found a number of terrific resources on Facebook and Twitter (including you).
For cardiac device patients, I recommend searching Facebook for support groups and recommend two in particular, Living With an ICD Support Group, and the Pacemaker and ICD Support Group. Both are filled with very knowledgeable patients who have already navigated the minefields and are happy to share their experiences.
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Thank you so much for sharing your two suggestions for online support, Doug.
Since I discovered your own YouTube videos about cardiac devices, you are now one of my own go-to resources when I have questions on that subject (because I really appreciate the unbeatable combo of a person with an implantable-device industry career background, plus lived experience as a patient with a device, along with your friendly and competent way of clearly explaining tech stuff!)
Thanks again, Doug.
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So many thoughts come to mind here! First, about “Dr Google” — in defense of the doctors, there is a lot of wrong info out there and even just plain weirdness around some health issues, and some patients could try various home remedies or believe something that isn’t true about their problems and panic. Just saying that I do understand why they would not want patients to self-diagnose.
I have found that nurse practitioners are generally not as pressed for time as the drs; they usually have longer appointments so they can discuss things in more detail with the patients. The NP at my cardiologist’s office has been eager and appreciative to hear about patient resources like your book and blog. Of course, I don’t know if she followed through with looking at it, but she did write it down and I think she was hoping to make a list of resources for patients.
Also, when you talked about not asking a doctor for advice unless he/she was also a patient, I suddenly remembered a funny story from when I was pregnant with my firstborn (who is now 33) and my preferred OB was also pregnant at the same time (which meant she wasn’t able to deliver him, bummer!). At one appointment when we were both pretty far along, she came barreling into the room complaining: “Are you tired of carrying that baby? I’m really tired of carrying this baby!” and we commiserated about heartburn and other associated problems. So fun and best appointment ever — it still makes me laugh to remember!
Finally, about peer support groups. I’m not a healthcare professional, just a heart patient, and I have been leading a peer support group (not online, in real life) for cardiac patients since November of 2015. We meet once a month at our local hospital and there has been so much encouragement and good information shared. I’ve learned more about heart disease than I ever wanted to know and I’ve met some wonderful people. Some people only come for one meeting, some are regulars, and for some it has been life-changing to know they aren’t alone — especially to see that others have gone through whatever treatment or surgery they are facing and are doing just fine now.
I would love to share about it — would you like a guest post for your blog sometime?
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Hi Meghan – yes, that was the point of this whole article: that doctors (AND nurse practitioners) should be creating a curated list of credible resources to distribute to all of their patients – precisely because there is so much untrustworthy info out there (sadly, some of the worst of it provided by those with the letters M.D. after their names – – – Hello Dr Oz and that embarrassing “libido-boosting super foods that will save your marriage!!!”)
That is why doctors who warn “Don’t Google” because they’re concerned (as they should be) about so much misleading content online MUST be providing a superior list of credible sites that they personally recommend, because saying “Don’t Google” is not working and will never work.
Hilarious story about your obstetrician! Yet another perfect bonding moment when your doc has firsthand experience with what her patients are going through.
Not that you have to have mumps or pneumonia to know how to treat mumps or pneumonia, of course. A physician doesn’t need to be a patient for me to trust that doctor. But the point is that I don’t rely on my doctors for nutrition advice, for example, because I know how much training medical schools provide in nutrition science (almost none) – plus there’s a very loud social media debate going on between dueling cardiologists (the Keto vs the plant-based diet fads, for example) so personally, I’d prefer to seek useful info by looking at which resource has the best training.
I’ve written lots about patient support groups in the past (so I’ll respond to your last statement via email).
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I agree 100 %, the medical profession does not have the time these days to spend with patients. And support groups are almost all online now instead of in person. I’ve learned lots from people who live it every day.
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Thanks for this, PJ. Even if the medical profession had oodles of extra time (which of course they don’t!), the reality is that most are NOT patients, have never had to walk in the hospital booties of their own patients, have little if any lived experience of what their patients are actually going through (especially the psychosocial fallout!) so may lack any insight into the profound value of peer-to-peer support.
I read recently about a very young woman who had been devastated to learn that her cancer had spread, and she was agonizing over how to break this bad news to her two small children. But she did not go to her GP for this kind of discussion; instead she went directly to her “young mums with cancer” online support group to pose her question, and then sit back and wait for the love and acknowledgement and YES, useful examples of ‘what worked for my family’ or ‘what I learned about this when my daughter was in the same situation.”
That kind of practical support is priceless – and it’s available 24/7, rain or shine, and almost always free to join.
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Hi Carolyn,
I am beyond humbled by your mention here and by the fact I have been featured on one of your slides as part of your presentation. Thank you for your ongoing support. You’re a gem – in more ways than one.
I love this topic. That Tweet of yours saying you wouldn’t buy a coffeemaker without Googling is one of my all-time favorites. Who doesn’t Google everything? The idea of doctors suggesting that patients stay off Google feels like something out of the Stone Age. Not gonna happen! Nor should it.
I do wish lists of blogs, online support groups and reputable sites could be compiled and handed out to new patients diagnosed with heart disease, cancer or whatever. I suppose this would be a monumental and constantly evolving task. Still…there is an untapped resource goldmine there.
As a side story, I rarely mention to my doctors the fact that I have a blog, and that I have written several books. I have mentioned it a couple times and there was zero interest, so I dropped it. Also, a while back, I offered to leave a postcard about my chemo book with my cancer center and was politely told that wasn’t allowed. I just wanted to donate a book. They didn’t even want the postcard left. Mayo has strict rules apparently. I get that great care needs to be taken about resources in their facilities, but sometimes it feels more like they want the focus to be on selling their books, etc.
Thank you for writing about this topic. I might have to write about it myself sometime.
‘Cuz you’re right, “who you gonna call?” Newly diagnosed patients crave and deserve info about the actual patient experience not just what they can get in their generally brief encounters with their medical teams.
Thanks again.
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Hi Nancy! As you already know, I’m a big fan – and anything I can do, anytime, to tell the rest of the world (and in this case specifically – PHYSICIANS!) how important it is to consider the immense practical usefulness of peer-to-peer support resources like yours – will be my pleasure to do!
Your story reminded me of that Mark Twain quote about experts: “Someone from out of town…” Imagining that your own doctor would show little interest in your blog (or any of your books) tells me that your doc has likely never bothered to check them out.
I wonder if some docs have so little personal awareness of the value of patient blogs that they imagine them as being like fluffy little “mommy blogs” filled with cookie recipes – and not a critically valuable resource about the patient experience!
I have also heard that organizations like Mayo Clinic are very careful about outsiders’ books being seen as endorsed by Mayo. In fact, when I finally screwed up my courage and asked a Mayo cardiologist to consider writing the foreword for my book, I was told that no physician there is allowed to do so because of the mere perception that such an project might convey an implied organizational endorsement. (Luckily, the amazing Dr. Martha Gulati, whose university has no such restrictions on their staff, said YES!- and created the most wonderful foreword ever!
Have you considered asking local hospital gift shops to carry your book? My own local hospital’s gift shop (run by the elderly volunteers of the Ladies’ Auxiliary – so no affiliation with the Cardiology department at all) started carrying mine recently, and it’s a very practical venue (all those hospital visitors stopping by the gift shop for flowers or chocolates on their way upstairs….) As you so correctly observed: Newly diagnosed patients crave and deserve info about the actual patient experience…”
Hugs to you…
C.
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No matter what the lab test results or reports from specialists are, my long term primary care physician starts every appointment with listening, including to my list of questions and queries from online and other sources. I think it saves time as no unsaid concerns blocking really hearing/understanding each other. BTW, he has a history of being on top of every question/report.
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I love hearing about physicians like yours! Not only a good listener, but also sounds like he must be an avid reader of emerging research and medical news. Lucky you!!
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I use Google. I have Atrial Fibrillation, I am on a the blood thinner Xarelto (rivaroxaban). When it was prescribed, I read everything I could. I saw that to be really effective you need to take with food at your evening meal. Neither the pharmacist nor the doctor told me that.
Also, fish oil is not good when taking a blood thinner. When I stopped taking it, the bruising on my arms became considerably less. I eat a low sodium diet, exercise, sleep through the night and stay hydrated and some of that I found out on Google to manage A Fib.
When I hear people tell me about their pills and what color they are, I find out they don’t even know what they do for them. Read people!! – it can save your life.
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Hello Michelle – if only more patients were like you! I always tell newly-diagnosed heart patients that their only job now is to become world experts on their own diagnosis. You’re already there!!
My own mother took a fistful of prescription drugs in her final years (like the majority of seniors) and she had absolutely no clue what was up. She just referred to them as “the pink ones” or “the yellow ones”. She completely trusted that, if her doctor had prescribed them, they must be okay – and had no further interest in reading (or asking questions).
Xarelto has 19 pages covering dosing, safety, efficacy, etc. in its online package material! Most people are not going to plow through 19 pages, But right on the very top of Page 1, it says: “Take once daily with the evening meal”. That’s pretty clear. The fact that your pharmacist did NOT mention a pretty important instruction like this, especially for a first-time patient filling a new prescription, is very problematic.
There should be (and likely is) a dosing direction like that attached right to the pill bottle, but dosing instructions should be repeated out loud to promote patient safety.
The fish oil link you also mention has been around for a while; as you learned yourself, these supplements may increase bleeding time, making the effects of prescribed blood thinners – like rivaroxaban (Xarelto), warfarin (Coumadin), clopidogrel (Plavix), aspirin etc. much stronger. But that info is neither on the packaging nor online on the drug manufacturer’s (Janssen) website.
Another reason I wish all patients would heed your “Read, People!” advice is the very serious complication called drug-drug interaction (how a new prescription drug can react with medications you’re already taking. Separately, there might be absolutely no problem, but taken together these can be dangerous if not fatal. A dear friend spent almost six weeks in hospital with a usually fatal drug toxicity reaction called Stevens Johnson syndrome (and is now permanently blind because of that condition). The culprit turned out to be a well-know prescription drug that had been started two weeks earlier in combination with the previous meds she was already taking.
That’s why I recommend patients sit down and READ all the fine print before starting on any new prescription drug. There is no such thing as a completely benign drug so we need to know as much as possible to help guide shared decision-making with our physicians.
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As always, such excellent insights Carolyn! I am glad that your voice is reaching the ears of our physicians. To your point “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,” – when I was diagnosed with the rare autoimmune disease, scleroderma, I was provided almost zero information about the disease.
I had previously been indoctrinated not to “google” when it came to my health, but being so curious about the diagnosis I did take a quick look-up. I saw some very frightening images and quickly closed my browser, reminding myself that this is why doctors do not want us doing this. That being said, when I returned to the specialist for my follow-up the doc asked me if I had learned about the disease in the interim. I was incredulous!
How powerful would it be if doctors could direct patients to reliable information?
The solution was to send me to a regional Scleroderma clinic where again no literature or online resources were recommended. The internet CAN be a powerful tool for good… while I can not express how grateful I am to my docs for their treatment of my disease, there is still room for next step care.
Thank you for this important article.
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Hello again! Your comment – that you’d been “previously indoctrinated not to google when it came to my health” – is very telling. The basis of the very unfortunate government-sponsored “Don’t Google” public awareness campaign in Belgium – more details in the first link under “See Also”, above – was similar: you’ll obviously see such awful things online that you’ll immediately feel panicked – and also be convinced that your death is imminent. That could be true – as long as physicians choose to abdicate their traditional roles as educators by refusing to curate an approved list of credible informational resources to recommend to every patient.
Here’s how simple that would be for an average physician to start as a pilot project. Write the Mayo Clinic link (www.mayoclinic.org/patient-care-and-health-information) to ‘Patient Care and Health Information’ on a prescription pad to distribute to patients who ask for more info. This is good reputable resource covering the basics of symptoms, diagnostic tests, prevention, causes and treatment of hundreds of medical conditions, as well as the online support community called Mayo Clinic Connects which offers peer-to-peer support from group members, a team of Mayo Clinic moderators whose role it is to maintain trustworthy content.
And how on earth could any clinic that specialized in treating/diagnosing rare autoimmune diseases NOT provide credible “literature or online resources” to their patients? That’s SO unprofessional…
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So very true! In my case I feel as though there just aren’t a lot of resources for some of these rare diseases, but like you say, it would cost nothing to direct people to the Mayo clinic website (or the like).
Thank you again for all you do to raise consciousness of the medical profession and patients alike.
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Thank you! I found your blog through Nancy Stordhal so I know she feels the same way.
I’m a breast cancer patient, but I’ve had a stroke and the cardiologist is determined to find SOMETHING wrong with my heart. Going to her office is a quarterly test of patience since she can’t find anything and keeps piling on tests – and of course meds to prevent anything.
But thanks for making my visits to Dr. Google a normal thing. It’s how I found out that the cancer med I’d been taking probably caused my stroke. Now I need to tell the cardiologist. Think she’ll leave me alone? Doubtful.
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You have officially reached your lifetime quota of yucky diagnoses, Linda – so I sure hope that cardiologist is not correct in her pre-diagnosis efforts. We want healthcare professionals to treat us seriously, but it seems you may have the opposite issue at play.
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