Unseen, unheard: the commonly shared lived experience of patients

by Carolyn Thomas  ♥ @HeartSisters

At first, I was surprised that so many women living with breast cancer were following my Heart Sisters blog. I’ve never had breast cancer and I rarely write about breast cancer (except here, for example, on the known link between breast cancer treatment and subsequent heart disease). Yet what I was soon to learn was that heart patients have lots in common with cancer patients, or with anybody else who has been blindsided by a serious medical crisis. Although the diagnosis may be different, we can face the same shock, fear, confusion, pain and exhaustion experienced by all who suddenly know what it’s like to become a patient.

Abigail Johnston is one of those breast cancer patients. We follow each other’s blogs. She was a 38-year old lawyer and mother of two boys when she was diagnosed with Stage IV Metatastatic Breast Cancer (MBC) in 2017. She writes about this on her compelling blog, No Half Measures from her home in Florida.  Every word of her recent post called “Unseen and Unheard  hit home for me.        .      

A word of warning:  Abigail’s posts are not the frothy pink positivity of Run For The Cure fundraising events. There is no “cure” to run for at this point. Ironically, as she reminds us, so many MBC patients “don’t look sick”.  Abigail writes with brutal honesty about “how to navigate living while dying.” 

What grabbed me by the lapels and swung me around the room while I was reading this particular post was the commonly shared experience among MBC patients of feeling unseen and unheard by people around them, sometimes including family members.

As Abigail explains:

“To feel as though you are not worth the time or effort to others is a really awful feeling and isn’t one that I’d ever had very much prior to MBC. It is so perplexing and maddening to be at the point of needing the most help, the most understanding, the most grace  – and to be treated the worst.”

She described how she must strategize communication about her diagnosis or symptoms when she’s around certain people:

” I watch carefully for those who actually want to know the details. If I share a little bit and the person/people I’m with rolls their eyes or changes the subject or withdraws, I know that this person isn’t someone who wants to know about my experiences.

“Observing that someone you’d thought cared about you is unwilling or unable to actually lean in can be really devastating. I’ve experienced friends and family members who just can’t handle what I carry every day. As hard and as sad as it is, those relationships have to be placed at the bottom of my list of priorities. Such a disappointing and painful experience, especially when the same person who avoided their opportunity to actually show some support not only didn’t show an ounce of remorse, but attempted to gaslight me when I answered questions about why I didn’t share my struggle.”

Many years ago, I survived a misdiagnosed heart attack – a mistake that was ultimately corrected by a different Emergency physician, but followed by ongoing painful symptoms of Coronary Microvascular Disease (MVD), a disorder of the smallest arteries of the heart. Too small to stent, too small to bypass, yet still feels like having a heart attack. Every day. Sometimes, several times a day. Yet as Abigail mentioned, heart patients with MVD tend not to look sick. It’s largely an invisible illness.  See also: Is Coronary Microvascular Disease Serious? Is the Pope Catholic?”

Indeed, we all have unspoken expectations of how those we lean on for support “should” respond (largely based on how we would respond if they were the ones needing our support). It can be so hurtful to realize that what we would be generously offering if the tables were turned is just not coming our way. But with our closest family and friends – especially with our closest – their reality may feel much different. After learning about our catastrophic and frightening diagnosis, they want and need us to be“fine” again. Some simply cannot be around those of us who are not “fine” and – worse – will never be “fine”.   I wrote more on this in Choose Your Listeners Carefully.  

Like most heart patients, Abigail knows that we seek out those closest to us when we need support, yet we’re often sought out by others who need support, too.  Abigail has some practical thoughts on how this works, using an example from one of her cancer clinic appointments, when a staff person checking her into the clinic complained to her about a sore back, for example:

“I work really hard to remind myself that all struggles/feelings are valid to the person talking. But yes, I told her that complaining about a pulled muscle wasn’t appropriate when interacting with patients who have cancer, especially terminal cancer.

“But when my mom struggles with pain due to the stenosis in her back or there are other people in my life with injuries, I can empathize with them. I can put myself in their shoes and find some compassion, especially for those people who show compassion to me, to a point.

“I’ve often had to say to some that I’m just the wrong person to be complaining to and that usually does the trick.”

I think I’m going to take that line and embroider it on a pillow!

I know that many heart patients reading this have also experienced that scenario. We don’t want to be dismissive to others (because we so often know what it feels like to have our own symptoms dismissed).  I have a number of acquaintances I avoid spending any time with these days for just this reason. Because I live with something called refractory angina (that’s chest pain that doesn’t respond to conventional drugs or interventions), I regularly experience chest pain so severe that my inside freaking-out voice immediately goes to: “Is this something? Is it nothing? Should I call 911? – while at the same time other people around me are itemizing what honestly seem to be pretty minor complaints (or what my Santa Barbara friend Dave likes to call “the organ recital”). 

Like Abigail, I am generally my usual compassionate self around people who are suffering, but for those like that cancer clinic staffer, I know that I’d want to scream, “What are you thinking? Can you not see that you work in a frickety-frackin’ CANCER CLINIC?!  Nobody here needs to hear about your sore back!”

If this sounds insensitive or rude, it may be that you’ve never heard my late father’s favourite advice:

“Don’t tell your friends about your indigestion. ‘How are you’?  is a greeting – not a question!”

The reality, sadly, is this: people who live with what psychologist Dr. Ann Becker-Schutte calls “healthy privilege” simply have no clue. They often don’t know how to respond to illness in other people. They may want to say something helpful, but don’t know what to say, so end up saying things that can be hurtful or inappropriate. This isn’t because they’re willfully mean-spirited, just that they’re ignorant (in the true Latin translation of the word “ignorare”, meaning “to be unaware of”).   But here’s a helpful tip: if you recognize yourself among the healthy privileged, remind yourself that a person living with a serious or progressive illness is NOT likely the appropriate audience to listen to your minor complaints. 

I’ve written about what often happens, for example, when doctors become patients. Despite years of treating very sick people, when they themselves are the ones lying in the drafty hospital gown, they often seem utterly stunned by how awful it can be, as I once wrote in the British Medical Journal (BMJ):

“No matter how many years of clinical experience working with, caring for, and listening to their patients they may have, physicians and other healthcare professionals inevitably report a ‘Eureka!’ moment when facing their own health crises.

“They announce to their colleagues, for example, that hospitals are demoralizing, medical procedures frightening, lack of dignity embarrassing, symptoms distressing, dependence humiliating, the simplest of tasks exhausting, anxiety relentless, their past as a healthy person but a dim memory, and a future looming bleak and uncertain.

“Who knew?  Welcome to our world, doctors. . .”

 Abigail believes that the longer she has lived with MBC, the more she’s found that spending time with people who are also living with the same disease is important. These are the ones who can offer what she terms “grace and understanding”:  

“Others in the MBC community respond very differently, and grace is their default. These are the people I want to be spending time with, these are the people of character who enrich my life and the lives of those around them.

“I’ve spent my life and career as an advocate and caring for others. Even when I’m struggling or am not at 100%, I often am still meeting with and advising others with MBC. Those in the MBC community typically respond with gratitude,  because they know how much of an effort it takes to show up. But others outside of the MBC community who have been the recipient of my efforts for decades often don’t value that help and support. I’ve never expected reciprocation from those I’ve helped, and yet I’m still blindsided when there is no gratitude and zero reciprocation when I could use some extra hands.”

In her latest  Thanksgiving blog post, she added this touching observation:

“The hardest thing about building relationships with those in the MBC community is that we’re all living with a terminal illness and we die at a rate of 114-116 people per day here in the U.S.  Knowing more people means that more and more, I know the names and faces and stories of so many of those we’ve lost and their families. And my heart breaks a little more to read about the health decline, see the announcements when they’ve passed, and to watch their families adjust to that empty chair.”

I’ve learned so much from reading Abigail’s thoughtful articles about how to navigate living while dying. I’ve also learned from her writing that she has undergone four years of aggressive procedures, surgeries and drug therapy, often with dreadful side effects and symptoms as the cancer has spread. She closes her “Unseen and Unheard” post with this compelling plea to the rest of us about the importance of both seeing and hearing people who are suffering.

“When I was diagnosed with Metastatic Breast Cancer, I wondered if I would even see 40, since just getting the diagnosis felt as if death was imminent. Well, I saw 40 and then some. I continue to learn more about what it means to be living while dying every day.”

“The bottom line for me is that the experience of being unseen and unheard can flatten the most hardy of souls. It’s often difficult not to internalize the message of worthlessness from others, especially when those people used to be someone close. The pain and scarring of some wounds are deep and take a long time to heal, if ever.

“As I’ve said to those who are inflexible and behave badly, I’m way too old and way too sick to tolerate certain behaviors.

Yet another sentiment to embroider on that pillow. . .

Image: Coleur, Pixabay

NOTE FROM CAROLYN: I wrote more about the often shocking changes that happen when we become patients 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, or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 20% off the list price).

 

 Q:  Have you felt inclined to use statements like Abigail’s “I’m way too old and way too sick” or “I’m just the wrong person to be complaining to” ?

See also:

– Abigail Johnston’s blog about living with Stage IV Metastatic Breast Cancer,  No Half Measures

305PinkPack, a non-profit charity that provides community, advocacy, and hope to women in South Florida going through cancer treatment by providing them with free services (rides to cancer treatments, housekeeping and personal care services, childcare, grocery deliveries, etc.) that enable them to focus on healing and time with their families.

-Nancy Stordahl’s breast cancer blog, Nancy’s Point, and especially her book “Cancer Was Not a Gift and It Didn’t Make Me A Better Person”

Journeying Beyond Breast Cancer, Marie Ennis O’Connor’s blog, especially her Sunday Roundup of pertinent new articles about all aspects of breast cancer

Breast Cancer Action (your first stop before deciding how to support breast cancer organizations, especially during Breast Cancer Awareness Month in October)

“Despite the billions of dollars collected and spent on breast cancer research over the past half century, relatively little has been devoted to studying metastatic breast cancer patients or their particular forms of the disease.”  Read this TIME report called: Why the Women Most Likely to Die of Breast Cancer Have Gotten the Least Attention

Why “Call me if you need help. . .” is not helpful

“I care about you” and other things to say to sick friends

 

17 thoughts on “Unseen, unheard: the commonly shared lived experience of patients

  1. Yup. Visible wounds are much easier for folks to comprehend. I got much better treatment when I was on crutches than when I looked normal after a heart attack.

    Can you get an email list of “the healthy privileged” and send them articles like this? It is right on target, and the lack of understanding from friends and family just makes chronic illness so much harder.

    Liked by 1 person

    1. Hello Dr. Steve – always nice to see your name pop up on my Comments page.

      I think that invisible illness is cruel. I too had the experience of seeing the remarkably empathetic response from perfect strangers, never mind my own family and friends, when I spent four months in a leg cast after a cycling accident. I could clear the front half of the bus every morning on my way to work just by hobbling onto the bus with my crutches while other passengers scrambled to offer me their seats. People were unfailingly nice.

      Nobody leaps up to offer their seat to those with an invisible illness (whether it’s heart disease or Stage IV Metastatic Breast Cancer, as Abigail writes about).

      Take care – stay safe and warm up there in Alaska!

      Liked by 1 person

  2. Excellent article and thought-provoking perspective. I have not had breast cancer, but am a cancer survivor. So many of these issues are interrelated.

    After two years of benign breast biopsies, I was diagnosed with skeletal Non-Hodgkins Lymphoma. Women worry constantly about breast cancer at the expense of being aware of symptoms of other cancers. And then NHL chemo and long-term T1 diabetes caused my cardiovascular issues, including a heart attack. One thing leads to another.

    I’m fortunate to have incredible cardiologists who have listened intently to me and taken very good care of me as they figured out my micro cardiovascular disease. I’m grateful for that and for great conversations and sharing of info among fellow patients.

    Liked by 1 person

    1. Hello Dawn – you’re so right: you’re lucky to have a good cardiologist who is a good listener and also a good diagnostician. You’ve been through a wide range of health issues – from Non-Hodgkins to chemo-related heart attack and T1 diabetes – and now coronary microvascular disease. Lots to stay on top of – hope you are doing well. Take care and stay safe. . . ♥

      Like

  3. I especially love the observation, “You look great!”, accompanied by a beady-eyed stare that implies that “You look far too well to be as ill as you claim, so do stop trying to kid me!”

    Advice to self: STFU. Correct answer to observation: “Thanks! You look terrific too!”
    Underneath: GRRRRR!!

    Liked by 1 person

    1. Hello Sandra – that was one of my stressors when I had to take medical leave from work after my heart attack, that somebody from the office would spot me out for a walk and then report, eyes rolling, to our colleagues: “Must be nice – I saw Carolyn the other day having a walk in the sunshine…” What few if any of them would have realized, of course, is the amount of supreme effort, before and after, it took just to take that short walk.

      Love your ‘advice to self’.

      Take care, stay safe. . . ♥

      Liked by 1 person

  4. Working for decades as an ICU nurse, seeing the devastation of diseases and experiencing life and death close up. . . I have to say, that in the past, when family and acquaintances came to me with their “miserable cold” or their “painful toe” looking for sympathy and medical advice, I was EVER so tempted to say “Give me a break…do you want to know what REALLY being sick is???” Most of the time I restrained myself.

    I suppose we are all “dying” from the day we are born, but some of us end up with medical diagnoses that seem to show us a paved path to the door marked death. Watching my best friend actively dying over 2 years with MBC revealed to me the brutality of doing everything you can for someone with very little effect on the ultimate outcome. But the truth is, most people can’t handle being in the room with death because they have never faced their own mortality. I have faced death multiple times in multiple ways and I am not afraid

    I am by nature a listener, one of the best things I’ve learned for my own well being is to listen with great compassion, without feeling I need to take an action or fix something. To be fully present when listening and to join hearts human to human is healing in and of itself. It may not heal the cancer but it can help heal suffering and anguish.

    The truth is it takes time and effort and a degree of selflessness to become this type of listener. I’m sorry to say that a huge majority of people are selfish – they may give money or clothes to a charity but to truly open up and help another human being to bear their pain is beyond their capabilities.

    I am blessed to not be in daily pain or actively dying – at the moment. All my chronic conditions are stable at this point though the combination definitely slows me down. Without naming my diseases or current symptoms, I am quite comfortable saying I am OLD and I don’t do certain things anymore.

    Also with age comes WISDOM and I do not spend my personal time with self absorbed people anymore.

    Thank You Carolyn for always making us think about who we are and how we behave.

    Liked by 2 people

    1. Thank YOU Jill for your kind words and of course your astute observations about life. You have such a unique perspective as both a longtime former healthcare professional and also a person living with a number of chronic conditions.

      When I read Abigail’s original words, I knew that I was somewhere between responding “GIVE ME A BREAK!” and her “I’m just the wrong person to be complaining to!” – which somehow sounds so much kinder – and a perfectly reasonable response. Yet I can also see that for people who are in mid-report of their miserable colds or sore toes, hearing the latter might still be viewed as rudely unsympathetic.

      But the first time I had that “GIVE ME A BREAK!” response was many years ago (pre-heart attack) when I worked in disaster response with The Salvation Army. After weeks in a massive forest fire evacuation callout, I returned to our nice clean smoke-free city office in time to overhear our receptionist loudly complaining about the photocopier repair man, who was 20 minutes late. I couldn’t believe my own reaction – I had just been with people who had lost their homes, their animals, everything they had, barely escaping with their lives, and I felt like strangling this woman while demanding, “Do you actually think that is even worth MENTIONING!” Luckily, I walked out of the room before doing anything to land myself in women’s prison for the rest of my life. This extreme frustration apparently is a common reaction from those returning to ‘normal’ life after disaster response, combat, search & rescue, etc.

      As Abigail accurately writes, “all struggles/feelings are valid to the person talking”. But her message is such an important reminder to all of us to just be more aware of WHAT we’re complaining about and WHO we’re doing that complaining to.

      Take care, and stay safe out there. . . ♥

      Like

    1. Hello Pauline – that is so often true, isn’t it? I think what Abigail’s message touches on here is more the support (or lack of support) from the people closest to her, the ones who are doing the ‘unhearing’ and ‘unseeing’.

      By the way, I wanted to mention that I enjoyed reading your “Sorry I Need To Say NO” article on your blog – I have spent my whole life priding myself on saying YES to every one, so I share that reluctance to say NO, although I’m getting better with practice. “NO is a complete sentence!” as I like to say now. I know that saying NO to an invitation/request/demand/obligation most often means saying YES to myself and my health… As my friend Heather once bluntly said to me when I was dragging myself around, fretting over being overwhelmed with endless ‘must do’ tasks: “What are you trying to prove?”

      Take care, stay safe. . . ♥

      Like

      1. O Carolyn thank you for comments on my blog… sometimes I do wonder if any real people reading it 😉 but yes, the ‘no’ thing is a minefield…

        I said no to something on Thursday just passed (the new me) and for the amount of thinking I’ve done about it since I’d have it done 10 times over… anxiety AND guilt… now there’s a combo 🥴…

        I think it’s me throwing in a lifebuoy and then jumping in just in case the lifebuoy won’t do the job and then discovering I’m the one drowning!!!… so maybe trying to prove I am a good lifeguard??? 🙄 but yes it’s the question to ask alright 👍

        Liked by 1 person

        1. Pauline, your last paragraph made me laugh right out loud in sheer recognition of my own tendency too (“throw in the lifebuoy and then jump in in case the lifebuoy won’t do the job…” – OF COURSE!)

          I wrote more here about how we feel somehow compelled to be THE ONE to jump – as if we and only we were indispensable. . .

          Like

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