‘Healthy Privilege’ – when you just can’t imagine being sick

~ Carolyn Thomas

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by Carolyn Thomas    ♥   @HeartSisters

Have you had the experience of knowing something intuitively, but without realizing that the thing you know already has a name?  For example, have you ever found yourself limping along on the losing end of an argument, yet  only much later (when it was far too late!) you suddenly thought of just the perfectly witty retort that you should have come up with? 

There’s a name for that. The French call this ‘l’esprit d’escalier’, literally “the wit of the staircase”.  You’re welcome.

Similarly, I’ve been writing for some time about my niggling frustration over something else that I didn’t even realize had an actual name. 

It all started when I met a whack of young (healthy! fit! not-sick!) tech-savvy hypemeisters in the heart of Silicon Valley while attending Stanford University’s 2012 Medicine X conference as an ePatient scholar. These folks seemed very busy designing, developing and securing venture capital funding for their health tech startup companies – each of which was destined, of course, to become the Next Big Thing in technology.

The more hypemeisters I met, the more niggling my frustration became, mostly because their self-tracking mobile health apps didn’t seem to have Real Live Patients like me in mind. Instead, their target market appeared to be what doctors call the “worried well”, like many of those in the Quantified Self movement.

For example, during the Health 2.0 conference in San Francisco last fall, Dr. Danny Sands (founder and former president of the Society for Participatory Medicine) tweeted this:

It struck me that the imaginary patient using this technology wasn’t anything like me, or my readers, or most of the heart patients I meet or hear from or talk to on any given day. Instead, the patient that the hypemeisters talked about seemed to be some kind of fairy tale fantasy patient:  tech-savvy, highly motivated, compliant, eager to track every possible health indicator 24/7, and most of all – oh, did I mention? – NOT SICK!

The pervasive attitude of the hypemeisters seemed to be that they – and they alone – could transform patient engagement, the entire health care system, and possibly life on this planet as we know it through the sheer brilliance of their health app/device/technology.

Turns out, there’s a name for that attitude. I was gobsmacked to learn this particular name recently from Dr. Ann Becker-Schutte. She’s a counseling psychologist in Kansas City who explained the concept like this:

”   Many physical health conditions and all mental health conditions fall into the category of “invisible illness.” 

“That means someone who is casually looking at you might not be able to see the level of pain you experience.  And they probably don’t understand the effort that goes into a ‘normal’ day. 

“They don’t see or understand because they have some degree of what I am calling ‘healthy privilege‘.”

Eureka!  She was describing the hypemeisters! But she could also be describing (healthy) family members, or (healthy) friends, or (healthy) work colleagues, or (healthy) care providers who may be well-meaning – but just don’t get it.

Dr. Becker-Schutte adapted the definition of healthy privilege from Kendall Clark’s definition of white privilege, like so:

“Healthy privilege”:

1. a. A right, advantage, or immunity granted to or enjoyed by healthy persons beyond the common advantage of all others; an exemption in many particular cases from certain burdens or liabilities. b. A special advantage or benefit of healthy persons; explained by reference to divine dispensations, natural advantages, gifts of fortune, genetic endowments, social relations, etc.

2. A privileged position; the possession of an advantage healthy persons enjoy over persons with illness.

3. The special right or immunity attaching to healthy persons as a social relation; prerogative.

In addition to that formal definition, Dr. Becker-Schutte added this:

     Healthy people enjoy the privilege of bodies that work in the ways that they expect, free from regular pain or suffering, without extraordinary effort. 

“Healthy privilege allows healthy people to assume that their experience is ‘normal’, and to be unaware that coping strategies that work for them will not work for someone dealing with illness.”

What this means in everyday life is that there’s a big fat difference, for example, between a highly engaged community that enthusiastically uses technology to track daily health indicators like weight/mood/motivation/sex life/food/exercise/activities/sleep – and actual real live sick people coping with a debilitating chronic disease every day who may lack the energy, ability or will to commit to self-tracking technology in any kind of meaningful fashion.

As Toronto patient advocate Kathy Kastner wondered on Twitter recently:

” Self-tracking means you’re focused on your illness all the time. Is data the answer to everything?”

I am one of those real live sick people living with a chronic illness each day. Let me tell you that focusing every day on my illness is something I’m already worn out from doing.

I do consider myself an engaged patient, but my idea of self-tracking is putting a sparkly reward sticker on a little bathroom cabinet calendar for each day I’m able to exercise.  See also: Self-Tracking Device? Got it. Tried it. Ditched it.

It’s been said that coping with a chronic illness every day can in itself feel so overwhelming that being expected to embrace an extra task like self-tracking is simply too much. It’s what Dr. Victor Montori and his Mayo Clinic-based team call “the burden of treatment” in their important work with chronic illness and Minimally Disruptive Medicine.  UPDATE: Find out more about Dr. Montori’s wonderful new book, “Why We Revolt: A Patient Revolution for Careful and Kind Care“.

But this reality must sound foreign to those living with the luxury that healthy privilege provides.

I think one of the reasons that the concept of healthy privilege had such a profound impact on me was that, until I survived a heart attack in 2008, I too had been fairly bursting with that insufferably smug sense of healthy privilege myself. 

I knew nothing about what it might be like to live with a chronic and progressive disease every day of my life – and why would I?  I’d been a distance runner for 19 years. I was a busy, active, healthy person with a career I loved and many family, community and social events pencilled into my bulging calendar. And even though I worked in hospice palliative care – so saw firsthand countless patients and families dealing with end-stage disease over the years – observing an ill person in bed means nothing in terms of understanding what “ill” feels like.

What I’ve learned since my heart attack is that, until you or somebody you care about are personally affected by a life-altering diagnosis, it’s almost impossible to really ‘get’ what being sick every day actually means.

Such is the bliss – and the ignorance – of healthy privilege.

♥

NOTE FROM CAROLYN:   I wrote more about what it’s like to suffer from healthy privilege 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 their code HTWN to save 30% off the list price).

See also:

How a heart attack turned me into an “information flâneuse”

Digital Tracking Device? Got it. Tried it. Ditched it.

The quantified self meets the urban datasexual

Self-tracking tech revolution? Not so fast…

When does mindfulness become mind-numbing?

Public humiliation as self-tracking motivation

Does knowing change behaving?

“If you’re clueless and you know it . . .”

When the elephant in the room has no smartphone (about my experience attending Stanford Medicine X in 2012)

♥

NOTE FROM CAROLYN: I wrote more about what it’s like to suffer from healthy privilege in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local 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).

.

Q:  Have you ever suffered from “healthy privilege”?

Published by Carolyn Thomas

41 thoughts on “‘Healthy Privilege’ – when you just can’t imagine being sick”

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  3. Hi, firstly I’m a big fan of your blog – love reading what you write.

    I wonder if maybe how you feel about tech depends to some degree on the type of invisible illness(es) that you have.

    For example, I’ve got loads of serious chronic disabling diseases that are “invisible” but I’m really interested in tech with regards to how it can help me manage my diseases.

    If you have a disease like Diabetes T1, then endless self-monitoring and tech are part of your daily lived experience.

    Given that sad fact of life, I’d rather embrace all the new tech innovations as they come as they can afford me new tools to better deal with my disease. Being able to download my BS tests to an app and chart my control and look for patterns is really useful. I’d be thrilled if the “hypemeisters” as you call them can work on an effective algorithm to be used in an artificial pancreas.

    I have other diseases that require me to monitor my HR and BP frequently as these may be the only signs that there is something wrong. I would love to have some kind of mobile machine that can do my blood sugars, HR and BP all in one, and an app to collate all the information.

    I don’t necessarily want to always be thinking about my diseases but I think there are many diseases like T1 Diabetes that don’t ever let you have the opportunity to take a “mental break” from the disease. If I don’t test my BS frequently then I’ll misjudge my insulin doses and I’ll be very sick or maybe even die. I’m mentally considering my diseases every 15 minutes, so if tech can help with that – why not?

    I suppose my point is that while lots of people might not feel that tech is useful or may not be interested in self-monitoring, it is possible that other patients with invisible diseases may really benefit.

    PS. I like what you wrote about healthy privilege. To me that is a wider issue (than just people in silicon valley). Sadly I don’t think 99% of people I encounter (including the ones who should know better like doctors and nurses) have a clue about the reality of chronic disease.

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    1. Hi Jo and thanks for your kind words about my blog. I agree with you – one’s attitudes about health tracking tech can indeed depend upon the nature of the chronic illness(es) involved. But as I wrote in this post, healthy privilege not only can describe the “tech hypemeisters” I met at Stanford, but “could also be describing (healthy) family members, or (healthy) friends, or (healthy) work colleagues, or (healthy) care providers who may be well-meaning – but just don’t get it.”

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  7. Carolyn, thank you for leaving that comment about “healthy privilege” on my most recent post. I never knew that term, but now, after reading your excellent post on it and then going to Dr. Ann Becker-Schutte’s post, I will know a lot more about it.

    Thanks for educating me and the rest of the public about this phenomenon. Prior to getting ill, I must admit, I had the feeling of healthy privilege. Like you say, until someone actually gets ill, it is hard to imagine what it’s like to be ill.

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  9. Carolyn, I just love your blog, and your writing style is straight from the heart.

    A couple of points, I wish to make, in no particular order.

    1. Tech people believe so strongly in what they do, that they think that technology will be the solution to all the world’s ills. There is something to be said for good old-fashioned hands-on, eyes open and heart curious work.

    2. Healthy privilege also extends beyond Silicon Valley. I recall speaking with someone who is healthy, who was resentful that our taxes went to fund transportation to larger medical centres for people who lived in the poorly-serviced communities of the province. This is someone who never gets sick, and so doesn’t understand.

    3. Which brings me to my next point. Some people are better at empathizing when someone is on the medical merry-go-round, but truly, they cannot fully understand what patients (and their families) go through, until they’ve walked that walk. It is Polly-Anna of me, but wouldn’t it be wonderful if no one had to do that “walk”?

    4. Healthy Privilege – I’ve had rheumatoid arthritis for thirty-five years. I was too young to appreciate and feel privileged prior to developing it. I believe that when you are healthy, you just get on with your life. It’s my Paper Cut philosophy.

    Your last paragraph sums it up beautifully!

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  10. Carolyn-

    I resent the hell out of people who brag about their good health especially when their education about how to achieve good health comes from junk science and watching the Dr. Oz show. LOL

    This is a great blog.

    Kathy

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  11. I like that term: healthy privilege. I have been just saying that most people from friends to doctors, including my family, don’t have “a frame of reference” (better known to me personally as “not having a effing clue”.)

    What I really want to say is this: yes you “cured my cancer” (I am now 4 years into remission from stage 3, N-1 Anal cancer) but you ruined my body and my life with your chemo and radiation.

    To hear my new Oncologist tell me “Learn to cope. The long term effects aren’t going away. At least you’re breathing. This is the price you pay for having had cancer.”

    A hangover is the “price you pay” for having consumed too much alcohol. A car accident is “the price you pay” for inattentive driving….. and on and on.

    I did NOTHING to cause my cancer but I have a price to pay? BULLSHIT.

    So it’s off to see a therapist. To “learn to cope.” More B.S..

    A caregiver all my life, my children, my mother, my husband. Now, at age 68 I am my own caregiver: hours of intense pain, from permanently damaged intestines and bladder. Neuropathy in my hands and feet. Diapers, the constant fear of fecal accidents, splitting headaches, angina, depression, isolation. FEAR of cancer nonoccurrence.

    “You had cancer, you’re over it. GET OVER IT!”

    “You had a heart attack, you’re over it. GET OVER IT.”

    Poverty. Having to JUSTIFY my need for State funded medical care, every six months to cover what Medicare doesn’t cover. Not to speak of the hours waiting in clinics for the health care that is not the greatest, uncomfortable testing. Scrounging up the money to keep the old car running so I can make the appointments. Having to make choices between food and gas and medicine……

    Do I feel better for having vented? Not really.

    I will put my big girl panties on, a smile on my face, and continue to project how strong I am. I will hide my depression, my pain, my disappointment in my Medical people. I am coping on the surface.

    Now I have a new term to label my friends, family, medical people with “Healthy Privilege”.

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    1. Oh, Ruth. Your story brought tears to my eyes. Keeping that happy face smile pasted on despite an overwhelming burden is exhausting – and nobody ‘gets” what living with life-threatening diagnoses is really like unless they’ve walked in our shoes. How could they? They enjoy the luxury of healthy privilege.

      Wishing you a day of peace…

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      1. Thank you Carolyn. I cringe when offered pity. I am offended at the “pat on the head”. I hate being patronized by young Doctors. All I ever wanted was HONESTY.

        IF I had been warned before treatment, I would have had the time to wrap my head around what was forthcoming, I like to think. But my cancer journey was peppered with being patronized by young men with no warning about the consequences of treatment. NOT that I had any choice. All I was told was: “If you don’t have radiation and chemotherapy that tumor will eat through your vaginal wall, you will drain feces through your vaginal canal causing infections, and your cancer will spread through your entire body and you will die. And it won’t be pretty.”

        My husband had just passed away. My children are all far away, two with cancer: one testicular, one with breast cancer. (Both fine now.) Neither had chemo or radiation.

        So: big girl panties: diapers. So what? Pain? It waxes and wanes. Self pity? I shed 3 tears at diagnosis and said “NO” I will NOT cry. There are so many others worse off than me…… I am a survivor, albeit a pissed off patient! I handle it.

        I am a health care advocate for several friends: it takes me “out of myself”. I cook, I share what I cook: the smiles I get feel good. I do what I can, when I can, the best that I can.

        I have a small dog that loves me, who kisses me goodnight, who cuddles me without judging. Warm fuzzies.

        I get by, I am valued in my community.

        Thank you, your blog allowed me to vent.
        Hugs

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  12. Ah so for 49 years I was one of the Healthy Privileged until a diagnosis of cancer took this away. From then till now I have tried to live like the healthy privileged but Lymphoedema has made this very difficult…

    On the surface to others they would think there is nothing wrong but they have no idea of the work that goes into ensuring this every day. Over the last few years I realised my life was becoming more and more narrow as I tried to avoid infections and problems from the Lymphoedema.. A month ago I had surgery in the hope of helping and I decided to start a blog about this and how it is to live with Lymphoedema.

    Even my husband was surprised by some of the things I wrote as I always kept hidden what it was really like. When we are the Healthy Privileged, we take it for granted and never expect that this can be taken away in an instant.

    Love your blog and thanks to EMWA for sharing and pointing me in this direction..

    Thanks,
    Helen

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    1. Thanks Helen for taking the time to share your unique story here, which illustrates that even our closest family members who live with us may be unaware of what’s really going on.

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  14. Carolyn,

    I so appreciate your perspective–and I am thrilled that my post offered language to describe your experience. Thank you for continuing and deepening the discussion. Perhaps if we can all use similar language, we can move change within our culture.

    Warmly,
    Ann

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  15. Carolyn,

    Oh so very true!

    Had the bizarre experience just yesterday of hearing from one of my docs (a very lovely man but oh so clueless about chronic illness) tell me he has just been dx’d w/ late stage malignant melanoma.

    He apologized profusely (even as he was telling me HIS story) for being dismissive of my depression (“just get over it”) several years ago when I first lost my career to heart disease.

    He now totally gets the “sliding down the hairy leg of the devil” that Dante spoke of in Inferno.

    I was feeling a bit of ‘healthy privilege’ comparatively.

    JG

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  16. Hi Carolyn,

    I deeply enjoyed this article. I was fully aware of what it took to care for a chronic illness as I had cared for my brother and uncle before him. But I was caregiver of both my mother and husband when my heart attack hit. People say things with no ideal of how hard things really are.

    My doctor told me I no longer had a choice of not accepting help or she would tell my cardiologist that he released me to care for two chronically ill people. She at that point knew better then I of what I was dealing with.

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    1. You had a double whammy as caregiver for so many and then your own heart attack. Sounds like your doctor was very wise to intervene on your behalf.

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  17. Thanks, Carolyn, for this great post. Interesting question about “healthy privilege.” I now realize that I have never had it.

    Even as a child people would ask me, “Why do you do it that way?” when my peculiar gait or twist was the only way I could accomplish an action at all. I didn’t know it, as I always thought of myself as pretty healthy, but now understand that I have struggled with a complex of genetic conditions since birth, unusual joint and heart condition among them, compounded by deformations from radical cancer treatment at 21. These are invisible to all but the most trained and observant, but those who do recognize them can’t imagine how I ever managed to do what I used to do and are amazed at what I do even now. But force of will only takes you so far.

    It seems to be the nature of privilege – health, wealth, any sort of privilege – that those who have it accept it as the norm. Especially when the other person “looks pretty good” and seldom calls attention that conditions are otherwise.

    Thing is: you really are damned if you do and damned if you don’t. These same people take any mention of disabilities (or relative lack of options/poverty) as “whining,” yet I have had occasion to learn that they interpret lack of enthusiasm for confident (and completely inappropriate) recommendations as “”Well then, I guess she doesn’t really care that much about her health.” Or, “So she’s not ready to change.” And “I guess she’s just not interested in working anymore.” And yes, they really do share those judgments with others.

    But I just don’t have the energy to spend it defending myself.

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    1. How sad, Kathleen, that your personal experience is that of one who’s never know what healthy privilege looks like. I suspect we tend to ‘normalize’ what we go through because to us it just IS “normal”, whatever that looks like. Thanks for sharing your unique viewpoints with us.

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  19. Keep on writing, Carolyn! You’re the best, and your words always seem to resonate with my heart. You are an inspiring heart sister, indeed!

    Thank you for all that you do. You are our voice and you are far more eloquent than I am. We all have our gifts, and your gift is sharing your thought-provoking life experiences with the world around you. What you have to say is very important and it is no wonder that you receive so many kudos and accolades!

    xoxo
    Bj

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      1. Hi Carolyn, I like this. I’ve had very little healthy privilege as I grew up with a genetic disorder that even though they arrested my seizures there was always the threat of the unknown or shoe dropping at some point. I really tried to live my life in spite of that.

        Then I was diagnosed with my other rare disease at 26. I went through a lot of hell before a treatment bought me 5 years of relative calm, even during that time when I was living outside my illness, I never once took for granted those days because I had worked so hard to get there.

        Now even as I await transplant I feel grateful for those times of relative quiet to be able to live without the constant slams of illness. Sadly, many don’t understand invisible disease, chronic illness, or disability at all. They see it as something to fear instead of part of humanity that sometimes happens. I think the concept of healthy privilege speaks to that as well.

        Thanks for this post, as usual. I really enjoy following your blog.

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        1. Thanks so much, Nikki. I agree – until people (or somebody in their family) actually experience “invisible disease, chronic illness or disability”, it’s almost impossible to truly get it. It’s why I urge others not to comment on such patients’ appearance (“But you look GREAT!”) as if lipstick or a new haircut have anything at all to do with how that patient is actually doing. Best of luck to you…

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