by Carolyn Thomas ♥ @HeartSisters
I have never had breast cancer, and I don’t write about breast cancer (except rarely). But I noticed soon after launching my Heart Sisters blog that a surprising number of women with breast cancer were reading, subscribing and responding to my blog articles on women’s heart disease. One of my favourites in this group was author and breast cancer activist Nancy Stordahl, who blogs at Nancy’s Point. We’ve never met in person, but Nancy and I have agreed over the years that the traumatic experience of facing a catastrophic diagnosis is shared by many, no matter what that medical condition may be.
So when Nancy invited me to participate in her 2021 Summer Blogging Challenge, I was pleased to oblige one of my favourite bloggers by answering the six questions that she asked about my blog: . .
1. Who are you? Tell us your genre, how long you’ve been at it, who or what inspires you or whatever you want us to know.
“I’m Carolyn Thomas from Victoria, here on the beautiful west coast of Canada, where I live in Grandbaby Heaven – about a five-minute walk from my darling 6-year old granddaughter Everly Rose, and a 20-minute walk from the adorably happy 4-month old Baby Zack.
“I blog about women and heart disease – our #`1 health threat. I started my blog Heart Sisters in 2009, about a year after being misdiagnosed with acid reflux in the middle of my own ‘widow maker heart attack’. My former public relations colleagues tease me that this is simply what happens when a PR person has a heart attack: we just keep writing and speaking and looking stuff up, because that’s all we know how to do!
2. What’s been your biggest blogging roadblock this year and did you come up with a way to get around it?
“COVID. COVID. COVID. . . . Last March, almost overnight, everything was being cancelled as the pandemic grew – from school to dental appointments to the National Hockey League’s scheduled season (a serious issue here in Canada!) I couldn’t hug my granddaughter for two months (and not much else matters when that happens). My blogging roadblock hit overnight, too. My passion for writing about women and heart disease seemed to evaporate. Week after week, I was simply unable to write anything except articles on COVID-19.
“And then one day, George Floyd was murdered by a white police officer in the U.S., and I basically stopped writing abut COVID-19. Just. Like. That. It took a while, but I’ve gradually been able to drift back to writing about heart stuff. I did revisit COVID in this one-year pandemic anniversary post, “My Year of Living COVIDly.” I’m beginning to view this pandemic as a chronic illness, much like my cardiac diagnoses: always out there and not going anywhere.”
3. What’s something you accomplished with your blog that you’re proud of?
“I write for other women like me living with heart disease, and I’m also pleased to see that a growing number of physicians, nurses, paramedics, cardiac researchers and other healthcare professionals now read, share and reply to what I’m writing about, too. So far, this site has almost 900 articles, attracting over 18.8 million views from 190 countries!
“But something I’m most proud of overall is the comprehensive 8,000-word, patient-friendly, jargon-free Heart Sisters glossary that I’ve created over the years – a translation of confusing medical terms, abbreviations and acronyms that you’ll hear tossed casually at you around the cardiac ward – almost as if they think you’ve been to medical school.”
4. What are some of your best blogging tips?
- Grammar and spelling count. Otherwise, it looks like you don’t care.
- Factual accuracy counts even more.
- Write about what you wish you’d been able to find when you first needed it.
5. How do you handle negative feedback or comments?
“I love my Heart Sisters reader comments! The notable – yet rare – exceptions have happened when I dared to express an opinion that was considered political. My ‘regular’ readers often write to me as if they know me better than they actually do – like one very disappointed reader who reminded me (before threatening to quit subscribing if I didn’t change my ways):
“Carolyn, I don’t follow your site for your political opinions.”
Or another who bluntly scolded me:
“Carolyn, who cares what YOU think?”
“(I laughed right out loud at that one. Why on earth would anybody subscribe to a blog if they did not care what that blogger thinks?)
“The most puzzling example of negative feedback was from a New Jersey Emergency physician, Dr. Rick Pescatore, who really did NOT like a quote I’d used from Harvard cardiac researcher Dr. Catherine Kreatsoulas. Instead of attacking a Harvard researcher, however, it’s far easier to attack the lowly heart patient/blogger who has quoted her research findings. Over the course of one morning – must have been a slow day in his ER – he sent several messages to me via Twitter attacking my “fear mongering” and calling me, among other names, myopic, misleading, unhelpful, inaccurate, unfair, uninformed. I responded to each message, politely suggesting that he should contact Dr. Kreatsoulas directly if he objected to the word-for-word direct quote I’d used. My eventual conclusion: he does not realize that Twitter is public?”
6. Share a link to a favorite post you’ve written RECENTLY (since last year’s challenge perhaps) that you want more people to read.
“Last September, I read an American Heart Association national survey report that blew the top of my head off. I simply could not comprehend what I was reading. Here’s what I wrote in a Heart Sisters blog post in response to that shocking report: “Women’s Heart Disease: an Awareness Campaign Fail”:
“The results were astonishing. They suggested that women not only had a low awareness of even the most basic facts about heart disease – the #1 killer of women worldwide – but awareness levels were significantly lower than an awareness survey 10 years earlier. Women were more likely in 2019 than a decade ago, for example, to mistakenly believe breast cancer is their leading cause of death. (It’s not, by the way, heart disease kills more women each year than all forms of cancer combined). And barely half of women surveyed knew that chest pain is a symptom of heart attack!
“A decade of lost ground” is how the official commentary from the American Heart Association bluntly described their survey’s stunningly awful results.”
“For me personally – a woman who has devoted much of the past 13 years trying to raising women’s awareness of our #1 killer – it was a particularly painful blow. I had to somehow come to terms with this reality: whatever I’d been doing to help raise awareness about women’s heart disease – it’s not working.
“I felt so utterly demoralized by the results of this survey that I wondered if I should even continue to write this blog. Providing more and more information to women who read my posts is not only an apparently ineffective use of my time, but as researchers at the University of Florida’s Center for Public Interest Communications wrote in their own report called “Stop Raising Awareness Already,” published in the Stanford Social Innovation Review:
“Because abundant research shows that people who are simply given more information are unlikely to change their beliefs or behavior, it’s time for activists and organizations seeking to drive change in the public interest to move beyond just raising awareness.”
“Similarly, offering more and more information (as our physicians, nurses and public health officials keep doing about the COVID-19 pandemic) is apparently NOT the way to “change beliefs or behaviors.”
“But when the post-survey sting began to fade, I realized that I’d known this intuitively for a long time. Every time I start a blog post with a story (my own or others’) to lead into the main point I want to cover (as I did at the top of this page), I’m letting the patient narrative carry the informational load.”
.
♥
NOTE FROM CAROLYN: You might be interested in the story of how this blog became a book published by Johns Hopkins University Press. It’s called “A Woman’s Guide to Living with Heart Disease”. You can save 20% off the book’s cover price if you order it directly from Johns Hopkins University Press (use their code HTWN). Or ask for it at your local library, your favourite independent bookshop, or order it online (paperback, hardcover or e-book) at Amazon.
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Q: What do YOU look for in the blogs that you enjoy reading?
See also:
–Fun facts about my women’s heart blog
–Patient bloggers at healthcare conferences: ‘real’ journalists?
Blog article themes I stole from Nancy Stordahl:
Heart Sisters 
Hi Carolyn,
So glad you decided to participate in my challenge again this year! It’s fun to read everyone’s responses. I, for one, care very much what you think. 🙂
I get “into trouble” with readers, too, sometimes when it’s perceived I’m getting too political. Now and then, a reader expresses her disappointment in me. So be it. There was a reason I named my blog Nancy’s Point!
Thanks again for joining in and, in fact, for getting this blog hop rolling! Don’t forget to come back and grab the code to add into your blog post so you can be added to the Linky List and so the list will appear here on your post.
Happy blog hopping. Enjoy the rest of summer and life in Grandbaby Heaven!
xo
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Hi again Nancy – just wanted to let you know that I’ve copied the code as directed and the Linky List is now added to this post. Thanks once again for organizing this fun exercise this summer.
Take care, stay safe. . . ♥
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Love it. And I agree on the grammar. Sometimes if I read it aloud to any nearby (albeit “really it’s time for another blog” eye roll is my payback) I’m able to catch all of them. Alas with my waning eyesight due to diabetes from Piqray I can’t catch all of them on first publish, but I do go back for a clean up when I have some time.
At times the story counts more than the missed comma because the writings themselves show my vested interest in keeping the blog fresh, up to date, and increasingly full of important posts for all the readership.
Raising awareness of a specific disease, regardless of what it is, has a certain immediacy to it from time to time. And I have gotten the back of a few hands, especially when I said that besides prisoners with terminal illness or depressed immune systems, that I felt very slighted getting my vaccine after those who are in jail. I didn’t do anything wrong to wind up on death row. I was careful to state that I understand the racial discrimination in the judiciary system, but why should my life be risked and put after those who did do something to wind themselves up where they are? I was called racist, insensitive and some other choice words and lost some readers.
Our blogs exist to express our truth. If there are some posts that don’t meet with another’s liking, they should not read or politely express their discontent. It was clearly not meant in a racially driven manner and I do get the entirety of the prison problem. Most people do not even know what MBC stands for, nor the fact there’s greater problems with equity in treatment for certain racial and demographic groups. I wonder why that wasn’t brought up as I had pointed out in the post itself?
Mostly we win. Sometimes we simply can’t please all our readers all of the time!
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Hello Ilene – I have to say that going back to a finished blog post for a “clean up” of grammar, punctuation, spelling, etc. is absolutely compulsory for me! My WordPress blog host tracks how many revisions are done of each post and they stop counting at 25 revisions. I always have 25. My first few drafts – especially if I’m writing later in the day when my brain is not functional, as opposed to early morning – like now (5:50 a.m. as I write this) are simply awful. I also try to edit out extraneous words while cleaning up (for example, when my book editor Debby Bors once pointed out to me how many times I use the word “very”, she did me a favour! She permanently cured me of over-using that particular word!)
There’s a difference between our intent and the resulting interpretation in what we write, for sure. And your advice to readers to stop reading or just move on makes sense. I’ve unsubscribed to many sites based only on a single article that rubbed me the wrong way. And I’ve often had the experience of hesitating before hitting the ‘publish’ button after I’ve written something that I know might make waves with some readers. But sometimes, the topics that I expect pushback on don’t attract any upset, while a post that I feel is utterly benign turns out to be the target of angry reader comments! Go figure.
The problem comes when sometimes ‘expressing our truth’ is interpreted as hurtful. There is a lot of anti-science, anti-vax, pro-conspiracy drivel out there (driven by those who claim that their “rights” are being trampled) – drivel that’s defended as just “expressing our truth”, for example – but is in fact downright dangerous to public health.
As our own provincial Public Health Officer Dr. Bonnie Henry likes to advise us: “Be calm, be safe, be kind. . . ” ♥
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Please don’t stop, you are THE best blogger!
Your blog and book helped me tremendously prior and after heart surgery for my PFE.
Your stories and musings are like a warm cup of coffee every Sunday at breakfast. You are amazing and I learn a lot from comments too.
Hugs and strength to all women, strong is the new “pretty”! 💪
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Thank you Paula for such a nice compliment. ♥ I agree with you about the wisdom of my reader comments, too. I’m often astonished by the way these readers grasp a unique perspective on what I’ve just written and expand on it so beautifully! Take care, and stay safe. . .
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Dear Carolyn,
I have had heart disease for 10 years (Angina). I am a WomanHeart Champion since 2016. I run a support group in The Villages, Florida where the medium age is 67. I would like to comment on your statement:
“I felt so utterly demoralized by the results of this survey that I wondered if I should even continue to write this blog. Providing more and more information to women who read my posts is not only an apparently ineffective use of my time, but as researchers at the University of Florida’s Center for Public Interest Communications wrote in their own report called “Stop Raising Awareness Already,” published in the Stanford Social Innovation Review…”
Please don’t doubt for a minute that you have been effective! I have been pushing your book and your blog site to my 140+ members for several years.
I agree with you, however, that some women just don’t “get it”. I try to do public speaking to whoever will have me and tell them about all the symptoms (heart attacks have beginnings!), risk factors, types of heart disease, etc. Every time I speak, the audience looks like deer in the headlights! They had no idea about heart disease. So I get the frustration you are experiencing but I feel it is so important not to give up! Never stop preaching the dangers of heart disease!
Thank you for all that you do. I will follow your passion and drive to bring this topic to whoever will listen!
Holly Hollingsworth
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Thanks so much Holly for your kind words! Your own experience mirrors my own (saying YES to every possible speaking opportunity, for example). On some level, I have always believed that listening to my 90-minute “Heart Smart Women” presentation was all they needed to change their minds and/or behaviours. This however – according to behaviour science experts, not doctors who address all “non-compliance” with more and more facts and stats – misses a very important point: until a cardiac diagnosis affects a woman very personally (either herself or somebody she loves), most of us simply couldn’t care less about heart disease. Until my own serious heart attack in my 50s, I never gave heart disease a single thought, ever – any more than I thought about lupus or migraines or anything else that did not affect my life.
It was ONLY after that diagnosis (after my MISdiagnosis, actually) that I became obsessed with learning everything I possibly could, and then with sharing everything I’d just learned with every other woman out there. That’s why my WomenHeart training at Mayo was such a life-altering experience – no woman was safe from me after I got home from Minnesota!! “Did you know?!??!” became my standard dinner party question to any woman within earshot. (I’m better now… I rarely corner strangers anymore! )
I still find it deeply discouraging that no matter how much information you or I are sharing, the women’s awareness needle has not moved over the past 10 years – except awareness now is WORSE than 10 years ago. They might remember enough so that they’ll call 911 if they do experience the symptoms we tell them about – which is GOOD! We are doing good work, Holly – and we’ll continue to do this work.
Unless I get too distracted by discouragement and start writing about growing roses instead, which is a subject I LOVE, and unlike heart disease, is a topic filled with pure joy… ♥
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The standards of care in hospital for patients has fallen to carelessness, I think. I had my fourth ambulance trip into hospital since September 2020, most recent first week of August this year. I went into hospital from work. Symptoms: chest tightness – pressure, dull ache between my shoulder blades, dizziness, heart rate increase to 170 bpm, felt quite unwell. So my colleagues rang for an ambulance, paramedics arrived, I walked with them out to the vehicle, had to sit down part-way there; felt lightheaded. Eventually got into the ambulance, was asked had I lifted anything heavy, alluding to Costochronditris. I replied NO, been through that question it’s not that. Was given Aspirin and spray, telemetry leads on, BP cuff on, that’s when the silence happened the paramedic looked at me, then called their team member, they looked at my hands, my ankles, my heart rate and told me to keep still. I looked at my hands, from the wrists down the colour was blue, so were my ankles ( not had this happen before). I started to feel quite nauseous, given more spray, and another drug can’t remember the name, whilst driving to the hospital I said I feel much better now I can go back to work… NO was their reply, have to go into the hospital. Got into hospital, started vomiting at ER, into a cubical, replug into the hospital equipment, felt unwell again. Less than hour later Obs taken, temperature read at 34 degrees, nurse said oh thermometer is old. I was in and out of being awake, heard nurse calling my name and told to breathe, heard this four times, over an hour, temperature taken again different nurse who said oh thermometer is not working try the other ear, oh same, I’ll get the oral thermometer, did that, told me to keep very still, she took out the thermometer looked at me touched my head and hands, said do not move, you’re cold. I was very sleepy, but I remember asking why, she said you’re cold keep still, then ran to get warm blankets, put one on my head, one on me. The long and short of this was 4 hours since arriving, I was told nothing wrong, but you need a Holter Monitor, get your Cardiologist; I said I don’t have one…well doctor then. I asked why, if nothing is wrong? I then said I’m going home but first I’d have to collect my car, was told yes we are happy to discharge you. I got up dressed, was then questioned should you be driving now, after all the drugs you’ve had and you’re not well. I said, well as apparently I’m fine!? The next day, I go to a doctor get a referral and request for a Holter Monitor, to a Cardiologist, get to see this person who in their opinion diagnosed me with Acid Reflux and no need to ring for ambulance again, not had a heart attack, it’s not the heart. But you need to wear a Holter Monitor and have an ECG . So by this stage am confused, why a monitor and ECG? I go home and feel dismissed, do I write to the Cardiologist that from their decision: Reflux I don’t believe I need to have a monitor or any more cardiologist visits. I now realize, I start to get a panic/worried feeling at just the thought of having to go to a doctor. I think my trust in any doctor including the paramedics, hospital has evaporated. I feel sick just the thought of them. The care from the last trip into the hospital, was dismissive. Never before in this past ten months of feeling these symptoms, now with the fast heart rate, skipped beats wobbly jelly feeling, have I even had my hands and ankles turn blue the greyish skin look in my face- which my colleagues told me I had.
The tests stress tests with “suspicion,”, echoes, CTAG, Angiogram all clear, ECG not completely clear. Yet my episodes- are getting worse. The diagnosis has been three different things so far, Costochronditris, or Anxiety, or Reflux. Yep my trust in the medical profession is nil now, yes I’m done with them.
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Louise, I’m sorry you’ve been through this distressing experience. I’m not a physician so cannot comment at all on what may or may not be the cause, but I can tell you generally that it seems the diagnostic tests ordered so far seem to make sense to rule in (or rule out) cardiac causes – hence the recommendation for a Holter Monitor and ECG.
So much of medicine is often just trying to figure out what the problem is NOT, to eliminate potential problems that aren’t causing your symptoms until the actual culprit that is gets discovered. You might want to consider starting a Symptom Journal to help with this process: write down the date, time of day, the nature of each symptom, what you were doing/eating/feeling in the hours leading up to the onset of symptoms. Often a pattern begins to emerge over a period of time that can help physicians solve the mystery. You can read more about that here: https://myheartsisters.org/2019/06/30/start-a-symptom-journal/
I know firsthand how frustrating it is to leave the hospital without a clearly definitive diagnosis – but if you truly believe you’re “done with the medical profession” or if you refuse further diagnostic tests, it just means you’re ensuring that no further progress will be made in figuring out what is actually happening – which is likely not what you want in the long run. But it’s your call – best of luck to you.
Take care, stay safe . . . ♥
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Thank you Carolyn for your reply.
Yes the tests have been used, could be this, may be that, actually it’s this, no it’s this….
So Carolyn, it’s always been my choice, but I’m not a doctor, the doctors I went to see are. Now I’m tired, now I’m done, I’ll take my chances.
Thank you for such an important blog, informative site, really important.
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Your blog is very important and I hope you continue to write for as long as you are able.
Having worked in health care for 35 years before retiring, I know the system fairly well. However, over the last few years my husband was admitted to acute care on a number of occasions and finally contracted COVID and died while a patient in our local hospital. I know when the standards of care are not being met, and in his case that standards bordered on negligence.
I am appalled and disappointed at the current state of our health care systems. We all need to speak out loud and clear.
Thank you for your contribution.
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Oh Sheila – I’m so sorry for your tragic loss. Grieving the death of a spouse is terribly sad, but doing so during this awful pandemic – and when the care provided “bordered on negligence” must feel unbearably worse.
My deep condolences to you and your family. . . ♥
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Sheila – I hear you. I am so sorry to hear about your husband. I was a nurse for over 35 years before I retired. Recently, my best friend was in a nursing home and the care was so poor I was angry and in tears every time I went to visit.
I can’t even imagine how nurses in hospitals are coping these days. The system is broken here in the US…. I hope to live long enough to see it change for the better.
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Jill, I had a similar reaction to visiting my friend Ruth in her nursing home after a devastating stroke – for TEN YEARS. I had to sit in my car for a good long cry at the end of each visit. I wasn’t just feeling sad about watching my lovely friend’s decline, but the utterly humiliating way this active, involved, brilliant person was being slowly stripped of every shred of dignity in her final years on earth – as I observed overworked, short-staffed health care providers try – but too often fail – to meet her most basic needs.
The only thing that gives me some hope for the future is that physicians like Dr. Victor Montori at Mayo Clinic along with a growing number of other docs out there, are beginning to loudly advocate for what he calls a “revolution for careful and kind care”, as he explains in his very important little book, “Why We Revolt”. Have you read it yet?
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Truthfully, your blog is the only one I follow. I find the mix of factual information with personal experience a combination that I enjoy. Also, I appreciate the personal consideration you give to each reply.
I will be starting a blog in the near future and I hope it meets the high standards you follow.
Right now I am practicing with 240 character posts on Twitter. LOL
Blessings! and Thank You!
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Hello Jill – thanks so much for your kind words – that “mix” of facts and personal is typically a combination that I look for too in the blogs I like. Good luck to you in your blog, and with your practice tweets until then!
Take care, and stay safe. . . ♥
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