by Carolyn Thomas ♥ @HeartSisters
I’ve been thinking about the time earlier this year when I (briefly) listed my condo for sale – before changing my mind about leaving this tiny perfect apartment. Basically, inviting prospective buyers into your home boils down to asking strangers to judge you.
In a way, that little real estate experience reminded me of what many patients living with a chronic yet invisible illness like heart disease share with my readers: feeling judged by others.
I learned first hand about judgements aimed at patients long before I became a heart patient. Until then, I’d spent several years working in hospice/palliative care. In the hospital cafeteria one morning, I overheard two men at the next table talking about one of their colleagues who was away on sick leave. One said to the other:
“Oh, I saw ____ the other day. She was out riding her BICYCLE!”
There was something about the way he spat out that word ‘bicycle’ that stuck with me.That judgey tone (“Hmmmph… Must be nice!” ) implied that if you’re able to ride a bike, you couldn’t be THAT sick.
Fast forward from that cafeteria conversation to my own post-heart attack experience a few years later. After I was discharged from the CCU (the intensive care unit for heart patients), nothing in my life felt“normal” anymore. I believed that going back to work would make me feel normal again. But ongoing cardiac symptoms during my return-to-work trial led to an extended medical leave, which then led to a permanent early retirement. I was devastated. See also: Thoughts on Returning to Work if You’re a Heart Patient
And during those overwhelming and demoralizing days, the memory of that overheard cafeteria chat somehow stayed alive.
Early on, I dreaded accidentally running into my former workmates while out walking. When I went outside for my morning walks, I deliberately avoided routes that would take me anywhere near the hospital – in case they too would report back to colleagues: “I saw Carolyn the other day. She was out WALKING!”
If you happen to live with an invisible illness, you may know the distress associated with being judged by people who just don’t get it. See also: 30 Little Things About My Invisible Illness You May Not Know
The late cancer patient and blogger Lisa Bonchek Adams once wrote about this common phenomenon, reminding us:
“Just because people see me out in public, they shouldn’t assume that I’m back to normal or ‘feeling great.”
“It is hard to explain that it might have taken me all day to get the energy up to do that one errand or have that one coffee date with a friend, and that I’ll need a nap and to rest for the rest of the day after doing it.”
People living with an invisible illness typically lack crutches or a leg cast or a neck brace that would tell the judgey people out there that something bad has happened. Without those signifying tools, some of my readers tell me that nothing brings out hostile judgements quite like parking in wheelchair-accessible parking spots if they don’t “look” like they need them.
There’s a lot of judgey judging going on out there. Almost any chronic illness diagnosis will embolden some people – even perfect strangers – to itemize the flaws of sick people.
She sure doesn’t look sick. She’s a complainer. She’s STILL off work?!
If you haven’t already discovered the classic Spoon Theory© essay that exquisitely explains the realities of invisible illness, read Christine Miserandino’s classic essay. It’s especially helpful if you’re trying to explain your own reality to family or friends who don’t understand.
Our medical professionals can sometimes be the judgiest, as the American Medical Association’s own Journal of Ethics once described: 1
“Seeing is believing is a prominent orientation to patient care, so patients with hard-to-recognize symptoms frequently receive insufficient, inequitable support.
“Lack of empathy from clinicians can leave patients feeling misunderstood, isolated, and that they must bear the burdens of their disease without help.
“Some clinicians express frustration with patients who have invisible illnesses – blaming them, resenting symptoms without the privilege of certain expression, accusing them of exaggerating or being ‘difficult’, pathologizing them as malingering or psychosomatic, or labeling them in ways that are dismissive of their deep knowledge and understanding of their own bodies and lived experiences.”
It’s not only spoken words that can make us feel judged. In a study published in the Journal of General Internal Medicine, for example, Dr. Leonor Fernández – an assistant professor of medicine at Harvard – reported that one in 10 patients she studied “felt judged and/or offended” by comments written about them in their patient portal chart notes2 – especially among patients reporting poor health, unemployment or inability to work.
After a man with the letters M.D. after his name confidently misdiagnosed my heart attack as acid reflux, I left that Emergency Department feeling apologetic and embarrassed.
That embarrassment made me second-guess my own ability to accurately assess if my symptoms require urgent medical help or not. So when my cardiac symptoms returned and worsened, I couldn’t force myself back to an Emergency Department where I’d already been confidently told: “It is NOT your heart!” Instead, I spent two increasingly debilitating weeks popping Tums and Gaviscon – and wondering how on earth people with acid reflux could possibly function while feeling this awful – until my symptoms were no longer bearable.
Whether we are seeking medical help for ourselves or for our family members, how doctors and nurses respond to our concerns can have a profound impact on that sense of being competent healthcare decision-makers.
I’ve been reading the doctorly wisdom of U.K. physician Dr. Jonathon Tomlinson for a long time. He once wrote an essay on his highly-recommended blog, sharing a brutally honest self-assessment that echoes the words in the AMA’s Journal of Ethics.
“Thinking back to being a young inexperienced Emergency doctor and an exhausted GP, particularly before I had children of my own, I have no doubts that I left parents feeling bad about wasting my time.
“My intention – in a rather careless, ignorant or callous way – was to try to make sure they didn’t come back with a similar problem in future. My role was conflicted between my duty to my patients and my duty to stem the tide of demand.”
Dr. Tomlinson also cites an interesting study3 on how patients (or the parents of young patients) can often feel that their own ability to be healthcare decision-makers is being criticized, as Dr. T explained:
“Patients would find it difficult to question the doctor’s authority, and were left feeling silly for worrying or still being perplexed by the problem.”
I wonder how often physicians take a moment to simply reassure patients (or the family members of those patients). This could be as basic as telling them what Dr. Tomlinson now recommends to his colleagues – which is to say:
“You’ve done the right thing by coming in today.”
Most patients are already pretty good at judging ourselves more harshly than we’d ever judge others. So as Don Miguel Ruiz, the bestselling author of the wonderful little book called The Four Agreements, advises us:
“Doing your best is going to change from moment to moment. It will be different when you are healthy as opposed to sick. Under any circumstance, simply do your best.”
♥
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Dobson, J. “Invisible Illness and Measurability”. AMA J Ethics. 2021;23(7):E512-513.
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Fernández, L. et al. “Words Matter: What Do Patients Find Judgmental or Offensive in Outpatient Notes?” J Gen Intern Med. 2021 Sep;36(9):2571-2578.
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Neill SJ et al. “The role of felt or enacted criticism in understanding parent’s help seeking in acute childhood illness at home: a grounded theory study.” Int J Nurs Stud. 2013 Jun;50(6):757-67.
Courtroom gavel image: Sergei Tokmakov, Pixabay
Q: Have you ever encountered that “Must be nice . . . ” tone?
Part of this post was included in my book, A Woman’s Guide to Living with Heart Disease. (Johns Hopkins University Press). You can ask for it at your local library or favourite bookshop (please support your independent neighbourhood booksellers!) 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).
Heart Sisters 
I suspect that feeling judged is true for any of us with an invisible handicap. As my hearing gets worse and worse, I mis-hear and mis-understand on a regular basis.
I’m quite sure that people are thinking along the lines of “She just asked the dumbest question – we’d already talked about that!”
Or
“She just ignored me when I tried to talk to her – what a snob!”
Or
“Where did that question come from?!? It has nothing to do with the topic we’re discussing!”
Or just
“She doesn’t seem very bright.”
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Hello CP – Thanks for mentioning hearing loss. Impaired hearing is such a perfect example of an invisible condition because – unlike some serious non-invisible diagnoses – you can still walk and talk and look and sound the way others have always known you, yet the ease of conversations you used to take for granted can feel very different now. It’s what researchers like Dr. Kathy Charmaz call a “loss of self” – meaning “a fundamental form of suffering in persons who observe their former self-images crumbling away without the simultaneous development of equally valued new ones.”
Barbara Kelley is the executive director of the Hearing Loss Association of America, and she had some wise words to share with those of us who might feel like isolating because of that hearing loss. She said: “It’s more important than ever for people with hearing loss to stay connected. One of the biggest determining factors to how well a person deals with hearing loss at any age is whether they have a community of support, which can include family and friends, plus connecting with others who have hearing loss at support groups or events.”
I hope that you’ll find that kind of helpful peer support out there. Take care. . . ❤️
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Another excellent article — thanks for this.
I once swore I’d not go back to the ER for chest pain. Then when I was unable to walk across my office, a friend took me to Urgent Care. I was ready to leave and go home when a doctor colleague rang my cell phone to say, “I know what you are thinking but you go on to the ER by ambulance. You are a 63-year old woman with chest pain!”
I took his advice partly because I didn’t want to tell him I was too stubborn to get it checked out. But I’d been this route before only to be told my heart was fine. That was 2007 and I didn’t get the diagnosis of microvascular angina until 2018!
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Hello Sara – bless that doctor colleague who rang your cell phone to encourage you. There’s an intuitive person who knows you.
You waited 11 years for a correct diagnosis?! No wonder you vowed not to go back to the ER. Every time you went back, you must have felt hopeful that THIS TIME they would be able to accurately diagnose you, and each time you’d leave disappointed and upset. Who wants to keep getting tormented like that?
But whenever I hear people say they’re “not going to the ER anymore for chest pain” (it’s quite common actually!) it makes me think they’re “cutting off their nose to spite their face” (if you know that expression)…
Microvascular angina is so much more difficult to diagnose (compared to obstructive coronary artery disease where there’s a nice big blockage visible during angio in the cath lab. The diagnostics ARE improving, little by little – but you might still need to conquer uninformed or skeptical doctors – as one MD told me: “I don’t believe in microvascular disease” – as if we were talking about the Easter Bunny or Santa Claus! Can you imagine his patients getting any competent opinions on their symptoms?
If your heart was “fine”, you wouldn’t be unable to walk across your office. Your heart was NOT fine!
Have you ever watched the INOCA International videos from their European ‘Meeting of Minds” conferences on non-obstructive heart disease? Every heart patient living with microvascular disorders should watch these! The speakers are world experts on this unique diagnosis: Here’s the link: https://inocainternational.com/video-presentations-from-the-meeting-of-minds/
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Thanks, Carolyn. This is an important topic.
That concern about being judged is undoubtedly at the root of my need to strategize before appointments because I guess I assume I am being judged (as has happened in the past) and not being taken seriously.
And the part about not “looking sick” is spot on. I think many people, especially women, are socialized to hide the appearance of being unwell, at least as much as is possible. That’s not healthy at all.
I also think the depression people feel at being diagnosed with something or (if you are like me) just feeling unwell, is an important variable. When I don’t feel well, I pretty much have to address the depression before I can expect to feel better physically.
Just a few days ago, I was having a conversation about handling stress with a book club friend of mine who is a retired physician. She was commenting about my fibromuscular dysplasia diagnosis and how that must have me on pins and needles all the time. Fortunately with more information now, and more arterial scans under my belt, I don’t worry as much about dissections or aneurysms, but she’s the only person who recognized how stressful that diagnosis is….and talk about something being invisible!!
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Hi Helen – I suspect that strategizing before a medical appointment is not a bad idea for all of us (not being taken seriously is a good motivator for changing that dynamic!)
14 years ago, I wrote about why so many patients seem bent on looking better than we feel for our doctors’ appointments (link here) As one heart patient wrote: “Should we let our doctors see reality, or our smiley-face pretense that we are ‘Fine, just fine’ – even when we’re not fine at all?”
Shouldn’t we WANT our docs to know when we are NOT fine – so maybe they can help us by having an accurate all-round overview of how we are doing? As you say, not healthy at all!
I agree 100% with your thoughts on feeling depressed or unwell. And what an astute book club friend you have who beautifully empathized with your situation – not every listener has that wonderful and kind skill.
I’m glad you’re worrying less about dissections or aneurysms these days – that itself is a gift, isn’t it?
Take care . . . ❤️
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Before my diagnosis of Afib, I was constantly being told I just had anxiety, and felt bad for pushing for a more definitive answer. I knew there was something wrong with my body, but convincing everyone else was different.
A second diagnosis of chronic fatigue syndrome put me into the category again of “hidden illness”. One relative said “Oh, we’ll soon get you back into shape”, wanting to take me on bike rides and walks.
I think I was considered somewhat lazy for not consenting to these ideas! At least that’s how I felt at the time. It has been an uphill battle getting people to understand that yes, I may be able to go for lunch with them one day, but afterwards I will have to rest up, perhaps for a few hours or even a day. Having a hidden illness is certainly a challenge. I have not yet been asked whether I really need that handicapped sign in my car – perhaps the sight of me struggling to get out puts folk off!
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Hi Sue – Your relative was incorrect. Recent research updates (including from the Centers for Disease Control) have revised recommendations for treating ME/CFS and now say that exercise can make symptoms much worse. It just shows how uninformed the average person is about this diagnosis.
You’re so right – a hidden illness IS a true challenge.
Your handicapped sign in the car reminds me of the day I was driving a disabled friend to the grocery store for our weekly shopping trip. Our “usual” accessible parking spots were two end-to-end drive-through spots near the front door of the grocery store. But on on this particular day, there was a car (with a wheelchair parking pass hanging from the rearview mirror) parked halfway through both spots, essentially making two parking spots unusuable. I was about to put a nasty note on the windshield of the offending car when I heard a woman’s loud screams coming up behind us: “I’m coming! I’m coming! Sorry! Sorry! Sorry!”
I turned around and saw a middle-aged woman WEARING HIGH HEELS and RUNNING toward us to her car!! She told me as she was driving away (alone) that she had just run into the flower shop and didn’t think she would take long.
People like that are stealing a valuable parking space that people like you really do need. The world, as my lovely daughter-in-law likes to say, is filled with IDIOTS!
Take care. . . ❤️
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Hi Carolyn, that is interesting about the recent updates re exercise for CFS/ME. Will keep that in mind next time I see my doctor.
Your story about the woman taking up two handicapped spaces is priceless. I was reminded of the time I took my elderly mother grocery shopping, pulled into the handicapped space, and got a stare from a man standing in front – until he saw my mother, turned and walked away. He obviously thought that she was the handicapped person. So far, I haven’t had to explain myself – nor should I have to.
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Hi again Sue – you might be interested in reading this May 2024 paper from the CDC on Post-Exertional Malaise in CFS/ME patients (= the worsening of symptoms following even minor physical or mental exertion that would have been tolerated previously). The paper concludes: “Healthcare providers need to be aware that their patients’ ability to function may seriously deteriorate if they exceed their individual capacities for exertion.”
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Hi Carolyn,
Just read that CDC article, very helpful, thank you. I do pacing for my activities and it helps a lot. Thank goodness the medical profession is now paying more attention to ME/CFS, especially as it resembles symptoms of Long Covid syndrome. Ironic that we had to have a pandemic before more research was done on this subject.
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Hi again Sue – that’s exactly what I too thought when Long Covid was first compared to ME/CFS (although many doctors seemed to flat-out dismiss Long Covid in the earliest days when people were becoming so sick for so long). It was essentially a patient-led turnaround (helped by The Atlantic’s Pulitzer Prize-winning science writer Ed Yong who often wrote eloquently and convincingly about the seriousness of Long Covid, which then kick-started comparisons with ME/CFS).
I wrote more about this here: https://myheartsisters.org/2024/01/14/ed-yong-long-covid-patients-dismissed/
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OH BOY… yes. So much going through my head reading this. Exactly. I have too much to say for this comment. Will gather my thoughts. Thanks for speaking the unspoken Carolyn. I always appreciate your blog.
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Hello Dima – Thanks so much for your kind words. I hope that you will come back once your thoughts have been gathered and leave more feedback. ❤️
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Oh Carolyn,
You have touched so many issues that have occurred in my life, I’m almost afraid to respond and open up the floodgate!!! I’ll choose one for now.
Working full time, my heart symptoms, caused by hypertrophic cardiomyopathy (HCM), were becoming worse and worse with more chest pain, more arrhythmias, more shortness of breath on maximum medication.
Then my heart decided to blow up in an episode of TakotSubo or Stress Cardiomyopathy. I took a few weeks off and went back to work. But fatigue and just not feeling well forced me to ask for medical leave and then early retirement.
I had heart surgery twice, a year later!
I had to go to court and be judged by a literal judge since Social Security wanted to deny me disability benefits. They had a an expert witness who was supposed to provide a list of possible appropriate employment – for me they decided with a Masters degree I could be a consultant.
I stood before the judge and said “Look, I could POSSIBLY work 3 hours a day 2-3 days a week. However, I can’t tell you which days or which hours. What employer is going to tolerate that?”
I won my disability case.
The invisible disability issue hits home with me double, as my adult autistic son is leaving his part time job again because he just needs a break.
He hides his disability to fit in and not be embarrassed, which just adds more stress. Once, after a break from a job, my son went to a job counselor who said, ”Well, if you can work 2 days a week you can work 5”. REALLY?
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Good grief – the issue you chose is actually a boat-load of issues, more than most people’s lifetime quota, I’d say!
You had to go to COURT in front of a JUDGE? That’s so awful. That scenario would be a frightening nightmare for any healthy person without all your serious cardiac problems, never mind a very sick person whose entire future lies in that judge’s hands at that moment. I’m so glad that the judge really “heard” you.
I know how stressful just the monthly phonecall check-in was for me from the case worker whose job was basically to deliberately convince me to say during each call: “I’m just fine now” – so my disability pension application could be tossed out. She’d ask rapid-fire leading questions during each call like: “Would you say you feel a bit better/somewhat better/ much better now than last month?” I knew that if I’d answered anything but NO!, my application would be sunk.
When my pension was finally approved (shouldn’t have been surprised given all the paperwork my cardiologist had submitted on my behalf), I burst into tears of relief.
That ‘job counselor’ who worked with your son was in the wrong profession.
Speaking of stupid things said by “experts”, I’ve written entire blog posts (here for example) on the appalling words that come out of the mouths of people who should know better. For example, a 54-year old woman living with Prinzmetal’s Angina, a painful coronary spasm disorder) told me :
“I worked as a mail carrier. After I told my cardiologist that I needed to find a new job, he said: “Well, you’re gonna need one where you can lay down a lot. How about a mechanic? Or a prostitute?”
Really? Was that supposed to be a joke? hahahahaha NOT!
Take care of yourself, Jill – hope the floodgates can be nicely closed now. . . ❤️
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I, like you, was actually afraid to go back to my office for paperwork. I was sure I would be judged, walking in looking “healthy” without an oxygen tank or a wheel chair.
I can’t say whether I was given the side eye or judged by co-workers because I had already so harshly judged myself. Sometimes we are our own worst enemies. Doubting our own disability opens the field for others to doubt us as well.
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Oh, yes: harsh self-judgement! I get that! Embarrassment about “making a fuss over nothing” is pervasively common among women who are MISDIAGNOSED! And being embarrassed about our behaviour becomes a self-correcting motivator: don’t want to be embarrassed? Better stay away from that Emergency Department!
I met a woman at Mayo Clinic who, like me, had been sent home from Emerg despite textbook heart attack symptoms. But she was much smarter than me. While I was too mortified to go back despite my worsening cardiac symptoms, she did keep going back. And every time, she said to the Emerg staff: “I know my body! And I know that SOMETHING IS WRONG WITH ME!” On her 3rd trip back to Emerg, she was offered a prescription for anti-anxiety meds.
On the 4th, she underwent double bypass surgery. She was immune to embarrassment. And a lesson to us all!❤️
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I’m in the midst of an e-mail discussion, with my cardiologist. Trying to convince him that my symptoms are interfering with my quality of life and I would like a referral back to Mayo’s HCM clinic as well as the Women’s Heart Clinic.
I am fighting my ego that says I’m making a fuss all the way – LOL
Wish me Luck!
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I’m so glad you’re having this discussion about Mayo. – it means you’re listening seriously to that little voice telling you something is wrong and you need help.
When I was at Mayo, I thought patients could self-refer online (there’s an entire Book An Appointment page online).
Or maybe you need your cardiologist’s referral due to insurance requirements?
GOOD LUCK! And you are NOT making a fuss, my dear Jill! Keep fighting that ego – show it who’s the boss around here!!! ❤️
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Well Carolyn, that certainly resonates with me, as while being considered as a possible heart patient I was asked by a professional doing a test at a Heart Clinic ‘Why are YOU here?!’
And even when I was an inpatient, I was clearly not considered by all to be a genuine one – until after my bypass surgery when I overheard ‘If it can happen to HER it can happen to anyone!’
So, sorry I didn’t have swollen ankles etc and looked pretty normal. I was actually pretty sick and am forever grateful to have been taken seriously by the doctors – even if I was rather unusual – and was given the surgery I needed.
These and other incidents all impacted my confidence though, and it took years to properly process and accept the realities of my condition – and especially after being repeatedly disbelieved preceding my follow-up diagnosis of Microvascular Angina.
Your blog really helped me through that!
All well now, I am glad to say, and I have seen more acceptance for both this MVA diagnosis and, in my personal experience, for women presenting at A&E (Emergency) departments with chest pain in the UK.
One doctor said that “We need to take care with women like you” and kept me in for observation. Well done NHS!
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Hello Jennifer – being “repeatedly disbelieved” is an appalling reality for too many women. Ouch!
And also for some men, too: I recall a story about a fit, athletic young man telling his doctor about his distressing cardiac symptoms – but the doctor quickly dismissed his symptoms without even ordering tests (“Look at you – you’re the picture of health!”)
But men generally do NOT have to beg to be believed when they’re sick. Women do.
It’s 2024 and we’re still seeing emerging studies that conclude women are still being “under-diagnosed” compared to our male counterparts (that’s polite doctor-speak for DIAGNOSTIC ERRORS).
One of my favourite (or I should say LEAST favourite) stories is a true story about a husband and wife who, amazingly have their identical heart attacks 8 days apart. The differences in discharge instructions given to the husband compared to his wife (same age, same symptoms, same coronary artery culprit, same test results, same treatments etc.) You can read the shocking details in “My husband’s heart attack was treated differently than mine”
So it’s extra gratifying to see experiences like yours, and this: “We need to take care with women like you!” So brilliant. Every doctor who learns something new like that passes that new knowledge on to a junior doctor – or sometimes even a senior doctor! Love that!
Take care. . .❤️
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