“We are all patients.” No, you’re not.

17 Dec

by Carolyn Thomas  @HeartSisters

patientI read recently about a conference on breast reconstructive surgery following mastectomy, to which not one single Real Live Patient who had actually undergone breast reconstructive surgery following mastectomy was invited to participate. This is, sadly, yet another example of “Patients Excluded” health care conferences – in stark contrast to the growing number of notable conferences that have garnered the “Patients Included” designation.*

The result of attending a “Patients Excluded” conference is just as you might imagine: hundreds of people working in healthcare getting together to talk at each other about caring for people who aren’t even at the table. Or, as one physician arguing for  “Patients Excluded” conferences protested online:

“I already hear patients’ stories all day long in our practice. Why should I have to listen to more stories at my medical conferences?”

Sara Riggare, a Swedish engineer, blogger and PhD student living with Parkinson’s disease, calls the trend toward Patients Included health conferences a type of ‘to-for-with’ model: going from doing things TO the patient, then doing things FOR the patient, to finally doing things WITH the patient.

In some circles, however, there appears to be little tolerance for hearing the patient voice at conferences – or elsewhere. Many experts who work in health care – either as providers, administrators or entrepreneurs – defend this exclusionary practice by insisting that, after all, we are all patients anyway at some time or other in our lives.

That insistence immediately tells you something important about the maker of such a statement, namely: they’re not patients.

What they may have been at some point in the past was a person who sees a doctor or goes into hospital for diagnosis/treatment defined as acute care medicine (broken bones, pregnancy complications, strep throat, ruptured appendix, knee surgery, etc).  Coincidentally, I’ve experienced each of these (temporary) conditions, which means I have some clue about what it’s like being on the receiving end of acute care.  During each incident, I was indeed a patient, but under relatively short-term treatment.

In acute care, as I like to describe it, you get sick, you get treated, you get better – and then you thank your brilliant doctor.

The term is defined as a branch of secondary health care in which a patient receives active but short-term treatment for an injury or episode of illness, an urgent medical condition, or during recovery from surgery.

So when I was discharged from hospital after a one-month stay being treated for near-fatal cases of ruptured appendix and peritonitis (both emergent acute care conditions), I never gave my appendix another moment’s thought after that.  Ever.

I became, quite simply, no longer a patient.

In fact, I propose that acute care is NOT, despite the claims of those “We-are-all-patients” folks, what actually being a patient is about at all, as I discovered only after being told I have “significant heart disease” in 2008. Significant heart disease, as I was soon to learn back then, is known as a chronic and progressive condition.

The pain and debilitation of being acutely ill can get better. The pain and debilitation of being chronically ill can last forever. In fact, many living with chronic illness feel terrible. Every. Single. Day. And while those receiving acute care can expect that feeling temporarily terrible will gradually diminish, in chronic care we often live with the chilling reality that it feels terrible now, and it’s likely to get even worse over time.

Acute care medicine is not the same as chronic care medicine, and thus acute care patients are not the same as chronic care patients.

And equally important, not all those living with a chronic illness are the same as all others with chronic illness – yes, even those with the same diagnosis.

Just as I do not and could not ever pretend to represent the experiences of all other heart attack survivors, those who make sweeping statements about “what patients need” or “what patients want” cannot possibly be speaking on behalf of all patients lumped together as if we’re one big homogenized voting bloc.

And this is as true for chronically ill patients of differing diagnoses as it is for those sharing an identical diagnosis.

Dave de Bronkart is more widely known in conference speaking circles as ePatient Dave. He’s also the co-author, with Dr. Danny Sands, of Let Patients Help: A Patient Engagement Handbook. After beating stage IV kidney cancer in 2007, he became a blogger, health policy advisor and international keynote speaker representing the patient voice at health care conferences. Yet as Dave himself wrote last March:

“People need to remember that although I advocate FOR listening to patients, I myself am only one – and I was only sick for six months. Every time there’s a patient panel, the audience experience broadens and improves – but I should never be the sole patient voice.”

After he recently spoke at a conference in Belgium during which “real patients and families” delivered what he described as “a punch in the gut – genuine suffering portrayed for real,” Dave had this advice for conference organizers in his response to a Susannah Fox blog post:

“Want to know if you have Patients Included? Ask this: ‘Are there any actual sick people in the room?

“I’ve become wary of myself in many ways, since I’m no longer sick. Even I know it makes a big difference when there are actual sick people involved.”

He also offered this example to those who insist: “We’ll all be patients someday”:

“I can tell you first-hand – no, that doesn’t work.

“Until you’ve actually had your life on the line, until you’ve had a diagnosis that stops you in your tracks, knowing your life will never be the same – until then, you don’t KNOW what it is to be in need, to really need help. And support. And care.

No, damn you; no, we are NOT ‘all patients’. It makes a DAMN BIG DIFFERENCE when there are ACTUAL SICK PEOPLE in the room.

“Until your life changes like this, you DON’T KNOW!”

And as Dave reminded me recently, this quotation by Ed Roberts (a leading figure in the international disability rights movement) sums it up nicely:

“If we have learned one thing from the civil rights movement in the U.S., it’s that when someone else speaks for you, you lose.”

But just as industries like Big Pharma are co-opting the growing interest in patient engagement, some non-patients are now co-opting patient status by repeatedly insisting that they, too, are patients – just like the ones they’re paid to work with or write about.

In reality, these non-patients are no more qualified to speak for patients than I was when I worked in hospice palliative care. Even many years spent seeing very ill people lying in hospice beds was simply not the same as knowing anything whatsoever about what it’s actually like to be those people, nor was that experience even remotely adequate as prep for my future role as a patient myself.

Experts known as population health managers are those who work on improving the systems and policies that affect our health care quality, access and outcomes. These experts typically describe three basic types of patients living with chronic illness:

  1. the high-risk patient (living with at least one complex condition, multiple co-morbidities, and psychosocial issues; about 3-5% of all patients)
  2. the rising-risk patient (living with multiple risk factors that could push them into the high-risk category if left unaddressed, such as a patient with diabetes, a sleep disorder, and high blood pressure; about 20%)
  3. the low-risk patient (living with a relatively well-controlled chronic condition; about 75%)

But even among these three broad categories, you’ll find people within each group who live very different lives compared to their similarly-diagnosed fellow patients. For example – depending on their type of myocardial infarction and the degree of their resulting heart muscle damage – you’ll meet heart attack survivors who recuperate uneventfully, return to work, run marathons, feel great, and check in with their cardiologists only for a friendly annual follow-up chat. See also: Which patients does the “patient voice” represent?

At the same time, you’ll meet heart attack survivors with ongoing cardiac issues who are no longer able to work ever again, who live a much-diminished life compared to their pre-MI days because of their symptoms, and who become the frequent flyers of the health care system.

You might also meet the family caregivers of the seriously ill. These are the heroic individuals who, because of the intensity of their day-to-day caregiving relationships, can speak on behalf of their loved ones in a way that no paid health care provider or industry entrepreneur or population health manager could ever claim to.

These unpaid caregiver/advocates may not be patients themselves, but they are indeed the next closest thing, and their voices matter.

Meanwhile, if you work in health care and you still believe the We are all patients” myth, I offer some useful tips for you here. To help you grasp the difference between a bona fide patient and somebody who just gets paid to talk about patients – here’s a handy-dandy list thanks to Casey Quinlan, author of Cancer For Christmas: Making the Most of a Daunting Gift, writing on the role and status of “the patient”:

  • it can be a role that comes and goes, and returns, different from before, or similar
  • it can be part of your identity – something felt and lived strongly, or coexisting quietly – and can develop and change
  • it can be a view others have toward you, whether you share their view or not
  • it can mean you’re highly dependent on others (anesthetized for surgery) or highly independent (self-managing) or co-dependent (co-managing)
  • it can be visible or invisible to others depending on what and how you share your experiences, and it can complement or clash with work that you do – or be irrelevant to any work you do

So if you don’t recognize yourself in any of these categories, then please stop saying: “We are all patients”

Because you’re not.

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This post was also published as a guest post in Prepared Patient Forum, Health Care Social Media Monitor, Carly’s Blog, and an edited version in the British Medical Journal.  Thank you all.

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Q:   Do you believe that “We are all patients”?

* Find out if the conference you’re planning is eligible for the Patients Included designation if you are specifically inviting patients to be on the program, on the stage and in the audience. Conferences applying for Patients Included accreditation must demonstrate five key event qualifications that meet the criteria for such accreditation. Some successful  examples include 2015 Doctors 2.0 & You;  2015 Health Quality Transformation;   Concordium 2015: Data and Knowledge Transforming Health;  2015 Hacking Health REshape;  2016 BC Patient Safety and Quality Council Forum;   2016 National #HCSMCA Symposium;  2016 Patients as Partners and  2016 CADTH Symposium.

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See also:

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67 Responses to ““We are all patients.” No, you’re not.”

  1. peggyrcc July 23, 2016 at 10:01 am #

    I consider myself a patient with all sorts of modifiers in mind, as I am one of the miracle survivors of a Stage IV kidney cancer, thanks to the same treatment that Dave deBronkart received. My own recovery made me both an anomaly in the cancer world, and nearly ashamed to be healthy when so many other kidney cancer patients were not only doing badly, but often because of inadequate treatment and inexperienced doctors. (And I am being nice here.) The devastating stats have improved for those diagnosed with Stage IV disease, but the lengthening time of survival generally puts someone in a chronic state of disease at best.

    Since I was doing so well, and could really use that experience to understand what went wrong in the diagnostic process with me and so many others, and the lack of good care for many, many more, I became a patient advocate.

    Though I can be a voice for patients, which is not really the voice of a patient in active treatment, I can hope to sensitize some doctors and the general public as to kidney cancer issues, and educate both to work together to get the best possible outcomes.

    And I am part of the Society to Improve Diagnosis in Medicine whose Los Angeles conference in November of 2016, includes a FREE patient summit, as it has done for years–run by patients for other patients AND for non-patients.

    Collaboration and respect, and not easy for any of the parties!

    Liked by 1 person

    • Carolyn Thomas July 23, 2016 at 9:15 pm #

      Hi Peggy and thanks so much for sharing your unique perspective here. That odd sense of being “nearly ashamed to be healthy” is surprisingly common across many catastrophic diagnoses (ironically, juxtaposed with that sense of feeling glad to be alive). And I love how you describe your desire to be a patient advocate. Thanks also for that info on your LA conference in November. Diagnostic error is a subject dear to my heart – literally. I was also involved in the patient video that accompanied last summer’s launch of the IOM report on diagnostic error (although I was distressed by the ultimate failure of the committee to recommend mandatory reporting – “Not the right time!” they said).

      Like

  2. Dr. Patrick Neustatter March 6, 2016 at 5:21 am #

    Reblogged this on Managing Your Doctor and commented:
    There is more bad feeling out there than I realized about patients not being included in medical conferences – here’s an example of an obviously heartfelt post about the subject.

    Like

  3. FibroSub February 1, 2015 at 9:24 pm #

    Reblogged this on Flying Dragon.

    Liked by 1 person

  4. Mitch Mitchell January 25, 2015 at 11:04 am #

    Hmmm… I guess I see the statement from a much different point of view.

    If you don’t like “we’re all patients”, you can’t negate “we’ve all been patients”. From a health care worker perspective, I’ve always thought it was important that we see things from a patient’s point of view as well as from our point of view if we happened to be the patient having services provided. You know, the “do unto others…” jazz?

    I tend to believe if you can’t get health care professionals to identify with patients and potentially see themselves as patients then they’re just a number, basically a non-entity whose only purpose is to help either the physician or the hospital make money. Trust me, I’ve been in the room when the financial people are talking, sometimes administration, and the question pops into my mind “how will that help patients?” Sometimes I’ve asked that question and gotten stares, which I’ll give back.

    I do understand the main point of view of this article. I just don’t want anyone negating the belief that slapping people around with the mantra of “you’re not a patient” is going to make them think more about them or their needs. After all, it took a lot of people a lot of time training and practicing and thinking about patient needs so you could stop thinking about your appendix ever again after a month.

    Like

    • Carolyn Thomas January 25, 2015 at 1:54 pm #

      Mitch, thanks for sharing your viewpoint here. I’m not “slapping people around” by telling them that they’re not patients – I’m merely reminding them of the reality that “do unto others” (although a nice concept) is woefully absent in far too many health care relationships as Real Live Patients can attest. It’s why health care professionals who suddenly become diagnosed with serious chronic illness invariably profess that this awful experience will actually change their practice forever. Why? Because “identifying with the patient” is certainly not a given in the profession, which is the entire point of my post.

      Liked by 1 person

  5. lorrainecleaver7 January 25, 2015 at 5:52 am #

    Reblogged this on Lorraine Cleaver.

    Like

  6. Kathi Apostolidis (@kgapo) January 24, 2015 at 2:12 pm #

    Great post Carolyn! The “we are all patients” is easily used without much thought to what it really means.

    Your post puts the dots on the i, as the French say..

    May I remark that from your list of “Patients Included” conferences one is missing and that is Patients in Power that had its 3rd venue last November. As a member of the Organizing Committee and in charge of the scientific program of the conference, I can tell you that it was conceived from its beginning as a PatientsIncluded one.

    I endorsed immediately the PatientsIncluded concept, as it expressed exactly what I also thought about medical conferences and my vision for Patients in Power.

    Liked by 2 people

    • Carolyn Thomas January 24, 2015 at 2:51 pm #

      Thank you Kathi! I have added Patients in Power to that Patients Included conference list. Keep up the good work!

      Like

  7. KC December 21, 2013 at 10:49 am #

    I agree; part of my illness includes chronic nausea, and the one doctor who took it seriously and really “got” that I couldn’t “just push through it and eat more” (which is basically a recipe for vomiting, not for extra nutrition) was the one who had been through chemo and spent “quality time” with major nausea. He was fantastic.

    But another doctor I have just really, really doesn’t get:
    1. that nausea is seriously unpleasant
    2. that it interferes with getting food in
    3. that it interferes with getting liquid in
    4. that it interferes with daily activities and sleep

    I personally think that anyone who has ever had a gastric bug or food poisoning should grasp these basics about nausea, but apparently not! (Either that or this doctor has been really, really lucky with his digestive system?) Instead, I’m left feeling like it’s all my fault if I don’t eat/drink/do more and that my food choices are all just whims, because it’s “only” nausea.

    I also have other symptoms going along with the particular breed of chronic illness I’ve ended up with, which also cause irritation among doctors
    “So, while taking this new medication, you should head to the ER if you’re dizzy”
    – “I’m already dizzy in general; how much dizzier?”
    “Augh!”

    Some medical professionals are better at being irritated at the *illness*, but most default to being annoyed at the patient because their illness is inconvenient/complicated.

    Seriously, folks, I’m not being sick on purpose here; it would be more fun all around if a medical professional could just push a button and I could be totally better and back to normal life; but that doesn’t appear to be happening, so we need to both make the best of it, okay?

    Liked by 1 person

    • Carolyn Thomas December 21, 2013 at 11:52 am #

      You tell it like it is, KC. Thanks for these unique insider’s insights here.

      Like

  8. DCpatient December 19, 2013 at 8:24 am #

    Excellent post Carolyn. It is important to keep this issue up front. I think the Patients Included designation has been such an important step.

    Here’s one of my original posts on these concepts.

    Liked by 1 person

    • Carolyn Thomas December 19, 2013 at 7:22 pm #

      Hello Donna and thanks for this link to your blog post. When it comes to determining the difference between patients and non-patients, we’re singing from the same hymnbook, honey!

      I especially loved this part of your post: Patient Warriors, those patients with chronic diseases, diseases that are potentially terminal or that leave life-changing and to whatever degree life-defining marks (visible or invisible), offer something fundamentally different to the conversation.” Well-said!

      Like

  9. Art Jones December 19, 2013 at 8:08 am #

    I appreciate Sara Riggare comment shared within the post. Sara is a Swedish engineer, blogger and PhD student living with Parkinson’s disease, she calls the trend toward Patients Included health conferences a type of ‘to-for-with’ model: going from doing things TO the patient, then doing things FOR the patient, to finally doing things WITH the patient.

    Using Sara’s thought process, I fall of the side of “We Are All Patients” because once we ALL embrace that notion then we will attain that lofty goal of true COLLABORATION with our HCP. It is probably useful to share the definition of collaboration: Collaboration is working with each other to do a task and to achieve shared goals. To work together, especially in a joint intellectual effort.

    Liked by 1 person

  10. Greg J December 18, 2013 at 12:12 pm #

    Is it fair to observe that very few of us are, most of our lives, patients – or at least that relatively few of us regularly conceive of ourselves first as patients?

    I ask this as someone for whom the concepts underlying Carolyn T’s post, and Patients Included generally, resonate, and as a follower of/correspondent with Dave DeB

    Like

    • Carolyn Thomas December 18, 2013 at 12:38 pm #

      Yes, that’s a fair question Greg. Again, I think it depends on the person, the diagnosis and the degree to which that diagnosis affects one’s day-to-day quality of life. For some, illness is a constant daily companion; for others, it’s merely a former or distant acquaintance.

      Like

      • Greg December 18, 2013 at 12:41 pm #

        I’m thinking that “illness” MAY be identical to “patient” -ness…but maybe not? Have to let that one simmer a bit… 😉

        Liked by 1 person

  11. gwyn December 18, 2013 at 7:18 am #

    There is another important point to be made: even if a doctor does have a serious, chronic illness, he or she most likely gets red carpet treatment from his or her peers. We non-physicians do not. The amount of attention and care that a patient receives from their physicians has a direct impact on the success of their treatments, as well as on the patient’s ability to process and handle their condition.

    Liked by 2 people

  12. Carly December 18, 2013 at 6:53 am #

    Reblogged this on Carly's Blog.

    Liked by 1 person

  13. Nick Dawson December 18, 2013 at 6:27 am #

    I’d like to suggest there are actually two different issues playing out here and by conflating them, we hurt the moment.

    It seems to me, we are increasingly — as a broad community and participatory medicine movement — saying patients must be included without saying (but believing) only certain patients count towards inclusiveness. Frankly, I see that as the same kind of elitism, prevalent in the industry, the ePatient movement is raging against.

    Instead, I’d like to see us clearly delineate two separate concerns (and Carolyn, your post, as Dave says, is _the_ place to start this discussion… kudos!).

    First, we cannot ask for patient inclusion while at the same time saying not everyone is a patient. It’s incongruent. Instead, I’d like to see the definition of “patients included” morph to encompass the understanding that people who identify as patients before they identify as another part of the healthcare system (admins, providers, wonks, etc) bring an acquired expertise which should be included, on equal footing, in dialogues about healthcare.

    One of the things I love about your post is how clearly you advocate for having a patient with a specific DX at the proverbial table when that DX (or processes and protocols related to it) are discussed. Put another way, if we’re talking about heart disease, my experience as a knee patient doesn’t qualify me to speak on behalf of heart disease patients.

    I suspect most of us are inherently comfortable with that idea.

    The second issue — what really concerns me on a scale larger than this post — is the question of who qualifies as a patient.

    I’ll be frank here as well – if we continue to ask for a seat at the table by telling others they don’t qualify to be in the club… well, we aren’t going to get very far. Instead, I’d rather see the Movement help people who casually toss out “we’re all patients” understand, more deeply, the dramatically varying levels to which different people are concerned with and involved with their health.

    And by aiding in that understanding, we might also help some of those who lean on the phrase to actually touch a deeper spot within themselves about how they feel regarding their own health; maybe they’ll move from someone who is 100 things _before_ they are a patient, to someone who identifies as a patient and then 99 other things. Or, at least, they might surface more of their feelings about being a patient and, in doing so, gain empathy which helps us all.

    So even if they are an orthopedic doctor who also happens to get chronic ear infections, they might come to better understand the importance of full inclusion of joint pain patient expertise in dialogues.

    Like

    • Carolyn Thomas December 18, 2013 at 7:00 am #

      Thanks very much Nick for taking the time to share this thoughtful reply. Your delineation of two separate issues seems to boil down to one over-arching question: “Who qualifies as a patient?” That seems to me to be the key focus here. For example, my reaction to your concern that “if we continue to ask for a seat at the table by telling others they don’t qualify to be in the club… well, we aren’t going to get very far” is to simply repeat your excellent example of the knee patient being clearly unqualified to speak about heart disease. Few other knee patients would be offended by this distinction – would doctors, nurses, administrators, population health managers or other non-patient “experts” mind hearing the same thing?

      I have no problem at all reminding experts that they do not and cannot speak for me – for if I and other patients don’t speak out on our own behalf, who will?

      Like

    • Carly December 18, 2013 at 7:04 am #

      Nick, I agree with you that the problem is really multiple different issues. Really any issue can be broken out into so many smaller portions, which is something I get a sort of sick pleasure from 😉

      All perspectives are important and can yield lessons that can improve the care experience for everyone – if we listen carefully. I wouldn’t ever say that patients who are also health care providers should be excluded. Their insider view of the patient experience can provide really valuable information and their prestigious positions in society can make people actually stop and listen and get things done. This is the experience of Michael Graves (personal hero and famous designer). It is funny though, that these people often don’t even make mention of their patient status in their speaker bios.

      We also need to include a wider range of patient voices from different points of the spectrum. This would be the variance in disease severity, socioeconomic status, and the point in their own illness journey (old timers can forget the fear and uncertainty that newbies face – and their new energy can revitalize communities, and newbies can learn a lot from the mistakes and successes of more experienced patients). There should not be only “survivor” stories, or the opposite.

      Liked by 1 person

      • Nick December 18, 2013 at 5:38 pm #

        “All perspectives are important and can yield lessons that can improve the care experience for everyone – if we listen carefully. “

        Love the hyphenated clause Carly! Lots to be learned by listening to everyone.

        I also see a huge value in helping pull some of the patientness out of people who may use the patient moniker but who don’t yet fully appreciate (or empathize) with others who have a stronger personal identity as a patient.

        Liked by 1 person

      • Charlotte March 6, 2016 at 8:55 am #

        Carly, this post and this thread, in particular, has really hit a nerve with me! I have been a kidney transplant recipient for 22 years, and for most of those years was living a relatively healthy life and able to put my “patient” status on a back burner that only needed a little bit of attention. But, over the last 7 years or so, several chronic (and painful, debilitating) autoimmune diseases are creeping in so that I am definitely living the “patient” life on the front burner once again.

        But, what has really gotten to me when I’ve gone to some of the local Kidney Center/Kidney Foundation functions over the years or when I read their publications is that the patients they feature are the ones who go on to climb mountains and run marathons.

        I sat through one evening listening to one “patient” tell the story about how he climbed Mt. Rainier with his transplant doctor. Now, I get that’s an accomplishment–but it’s not a realistic, or necessarily even inspiring, outcome for most of the rest of us. This man had already been an accomplished climber before his transplant, so it is not exactly unexpected that he would continue to do so if he had a successful transplant experience.

        My point here is that this is not the story that most patients can expect. All I ever wanted when I was sitting on that dialysis machine was to have a “normal” life…(and at the age of 26 that meant holding down a job, have enough energy to have a social life and volunteer in my church & community, have children, have enough energy to enjoy raising the children and stay healthy long enough to raise them). And I did that!

        While those goals are nowhere near as glamorous or dramatic as running marathons, climbing mountains or skydiving — they felt just as difficult to me at times, and often insurmountable. I paid a high price to live the life I’ve led for the last 20 years, but it was worth it!

        And I know there are so many others out there who are successfully “fighting for their lives” simply by fighting to live life as “normally” as they can. The medical community (and maybe even the rest of the world) needs to be aware of the extraordinary accomplishments that patients make every day, right in front of them.

        Liked by 1 person

        • Carolyn Thomas March 6, 2016 at 9:40 am #

          Charlotte, I just love your comment! Thanks so much for sharing your perspective here. The heroic marathon runners/mountain climbers of the world are the ones who get the kudos and attention. But the sick person whose only accomplishment on a bad day is maybe being able to put dinner on the table for the family is no less heroic. I wrote more about why we often don’t find those “inspiring” role models all that inspiring here

          Liked by 1 person

  14. CarlyRM December 18, 2013 at 6:15 am #

    This post really hits a nerve for me. These are the issues I think about a lot.

    I believe that assuming everyone will be a consumer of a health product or service in their lifetime is not the same as everyone being a patient. If someone has a cold and goes to the doctor, they are nowhere close to the patient experience of someone with a chronic lifelong illness.

    We are experiencing a great push for “patients included” conferences, but I feel that so much more can be done to improve the number and scope of patient voices heard. It was shocking for me to learn that e-Patient Dave had only 6 months of illness, when he is seen as the ultimate patient voice these days. I am encouraged by his attitude in pointing out the reality and pushing for more patient voices.

    The fact is everyone has a different patient experience and the key is to expose the health care community and public at large to a wide range of these voices so a more complete picture can be understood.

    I have had Crohn’s for 20 years and have been working on getting a secondary diagnosis worked out for the last 6 months. My disease is complicated and presents differently in everyone, there are a lot of medications and even more secondary ones to treat side effects. The combinations are limitless, especially when diet, exercise, and stress are added into the picture. The disease can also be degenerative, but also can go into remission.

    The severity I experienced 10 years ago is different from the active disease I experience now due to different medications available today (which improve my symptoms) but also I now have much less intestine (due to multiple surgeries) that causes an increase in other negative symptoms.

    The realities of 20 years of chronic illness (with maybe 3 cumulative years of remission) bring a ton of problems such as patient burn out, caregiver and friend burn out, and serious financial burdens. I am lucky to have been able to graduate from undergrad and graduate school as well as maintain employment during my illness. In some years, my out of pocket cost for medical expenses is over $7,000 (and I have “good” insurance), not counting OTC medication or travel costs (my doctors are 1 hour away). These expenses are not devastating, but multiplied over my entire working life, it becomes difficult to budget for savings or fun. This adds to the stress level as well as the burn out.

    It is difficult not to feel hopeless. I am 32, but I often hope that I will die before my mother because she is my only real safety net.

    For conferences, we need to consider the patient background and their privilege. Several conferences recently have had patient speakers that had day jobs in the health care or insurance industry. KevinMD loves to run stories of doctors becoming patients. We must make it clear that these patients do not have a typical experience, because they understand how insurance coding and billing works, have doctor friends who can provide free advice, or do not know the hospital solely as “the place where my relative died.”

    We must also understand how time works on the patient. Being newly diagnosed and being told you have 30 years to live is an important patient perspective. Likewise, the patient forced onto Social Security Disability, living check to check and begging family for money to cover food is another important voice that is missing from the mainstream. These people are important. Hearing only a certain type of patient story limits the imagination of the public who we hope will create new ways of improving patient care.

    I have written about the difficulty patients face when asked to speak at conferences for free (or even pay to attend). We should consider the implications regarding the impact on a patient’s time/money/health when they are asked to speak for free. If the professional patient speakers are no longer actively sick, they have more time/money/health to spend on conferences and other advocacy work. This is great, because we need these strong advocates, but we must take care not to exclude the active patients because they may need more accommodation. The patient with limited income may self-select not to attend conferences due to the strain on their time, income, and health (/energy). We need to reach out more to understand what accommodations would help more patients from different communities attend more events, then find ways to make this happen.

    A recent article points out how few women are speakers at conferences, topping out at 38% for MedX. So we are further marginalizing the patient story. I hope this does improve for 2014.

    Liked by 1 person

    • Carolyn Thomas December 18, 2013 at 6:43 am #

      Wow – such a profoundly comprehensive response. This should be its own blog post, Carly! You astutely covered so many of the points that I hope our readers will ‘get’: the reality of ePatient Dave’s 6-month patient experience vs the reality of coping with 20 years of debilitating symptoms and surgeries; the financial and health burden patients face when attending conferences; KevinMD’s famous “when the doctor becomes a patient” Eureka memoirs – and on and on.

      But it was your last paragraph that stopped me cold. I will never forget watching (from home! in my jammies!) a Medicine X live-streamed conference session this year in which our lovely Regina Holliday was the sole woman/patient advocate speaking on a panel of famous men (no patients) whose onstage behaviour towards her was utterly appalling as they interrupted her, talked over her, and barely bothered making eye contact when she was able to speak. I’ll try to find the video of this disheartening spectacle. * Sigh *

      Like

      • Carly December 18, 2013 at 7:35 am #

        The article I linked at the bottom of my comment includes a link to a Google document where women speakers can enter their information. Immediately I am intimidated because the “title” column is full of “President” “CEO” and “Founder.” I’m just a patient – I guess they won’t want me on this list… The funny thing is that I can ID many women on the list who are PATIENTS but did not include that in their title. What is the cause of this impulse and how can we stop it?

        Liked by 1 person

        • Carolyn Thomas December 18, 2013 at 10:36 am #

          Interesting. That link clearly asks for “amazing women working in healthcare”. Ironic, given that I consider what I now do (as an unpaid patient/volunteer) in women’s heart health is far more significant “work” than anything I did for many years while being paid to “work” in hospice palliative care.

          Like

          • Susannah Fox December 19, 2013 at 5:06 am #

            Why not enter your names and see what happens? Don’t be put off by who’s on the list now or what words the organizers of the list used. Assume good intentions. Assume openness. What’s the worst that could happen? That they exclude you? THEN you can call them out.

            Liked by 1 person

        • DCpatient December 19, 2013 at 8:53 am #

          Carly, I am one who entered (one of) my formal titles on the list. (1) the goal of the list is to identify women speakers, so that was my lens (2) sometimes I speak from my personal patient experience, sometimes as a patient advocate or advocacy organization leader, sometimes from my professional health care expertise.

          If patient or epatient is the title you want to lead with, then use that. It would be well received.

          Liked by 1 person

      • Susannah Fox December 18, 2013 at 2:43 pm #

        Hi Carolyn,

        I think you’re referring to the “What if health care…?” panel at MedX. Here’s the post I wrote which features the video.

        There was an imbalance on stage that day. Yes, Regina was the only woman along with 4 men and the male moderator. And yes, she was the only one who did not have an advanced degree (or several) or the backing of a large institution. But the other imbalance is important: stage presence. The male panelists are 4 of the quieter people I know in the health/tech space. I did see a couple of the panelists looking at their hands, not sure of what to say, but put yourself in their shoes. Regina is a tough act to follow! I would be careful about calling out the behavior of all 5 of those men. Not all were rude.

        Like

        • Carolyn Thomas December 18, 2013 at 4:49 pm #

          Yes, that’s the one! Thanks very much for including a link to this panel discussion at MedX, Susannah. My perspective watching that panel was, as you know, a bit different than yours (as I mentioned in the comment left at the time in response to your post). You had mentioned that, because you already knew most/all of the men onstage, you’d decided to “forgive them in advance.” Some panelists – not all, but some – were not only looking at their hands but clearly staring off into space while Regina was speaking. But making eye contact with the person who is talking to you is, I believe, a pretty basic indicator of common courtesy and good communication skills, no matter how many advanced degrees or institutional backing one has. And communication is what I’d assumed that panel was all about.

          Like

        • Nick Dawson December 18, 2013 at 5:29 pm #

          From my perspective as someone who helped organize the panel and as an audience member, literally in the front row – the conversation (for whatever reason) diverged from open, forward-thinking, positive day dreaming about *what might be* and became more about calling attention to the disparity of the panel. The result was even the best, most well intended ideas were perceived as inadequate and unworthy. It was uncomfortable and I’m not sure it moved the dialogue of The Movement forward. I think everyone involved, including the audience, suffered as a result.

          Liked by 1 person

          • JetGirl December 18, 2013 at 9:09 pm #

            I just watched the video and can see that the disparity did interfere with what may have been the original intent. But isn’t that where we can find the gold mine of solutions? When we can follow and contribute to the ACTUAL conversation we are a part of instead of clinging to our imagined script.

            I think a tremendous opportunity was lost here. Perhaps it won’t be the next time.

            Liked by 1 person

  15. Journeying Beyond Breast Cancer December 17, 2013 at 10:36 pm #

    Reblogged this on Health Care Social Media Monitor and commented:
    Sharp insight as always from Carolyn Thomas

    Liked by 1 person

  16. robinatsmartpatients December 17, 2013 at 6:57 pm #

    Beautifully, cogently expressed. I think those who disagree have never been patients or close-up caregivers (who wouldn’t say, “I’ve been there” but “I’ve seen it”).

    Liked by 1 person

    • Carolyn Thomas December 18, 2013 at 6:31 am #

      Such an important distinction, Robin! There is simply no comparison between those able to accurately say either “I’ve been there”(patient) or “I’ve seen it”(caregiver) and those who have experienced neither role but claim to speak for us. Not even close.

      Like

  17. e-Patient Dave December 17, 2013 at 1:38 pm #

    Wow! Huzzah! Epic! 10 of 10!

    I’ve seen and done a fair amount of writing on this topic, and this may be the capstone, the summary, the ties-it-all-together.

    I’m so glad that so many disease / patient-related movements are finally bumping into each other and shouting out what we see in common!

    Thanks to @MightyCasey for the pointer on Twitter.

    Liked by 1 person

    • Carolyn Thomas December 17, 2013 at 1:47 pm #

      Welcome to Heart Sisters, Dave – and thanks for sharing your perspective (and for your eminently quotable quotes here). I don’t often hear a “Huzzah!” in response to my posts, but I’ll take it graciously . . . 😉

      Like

  18. Jodi Jackson December 17, 2013 at 9:22 am #

    I love this! How I would love to give my first cardiologist a lesson in this. He was so arrogant as to assume he knew how I felt.

    This hits the nail on the head perfectly! Even though I have had a heart attack, I can only share my journey and not assume to know others as I have been so incredibly fortunate with my outcome! I can sympathize and have an idea, but never truly know 100%.

    Thanks Carolyn!

    Liked by 1 person

    • Carolyn Thomas December 17, 2013 at 9:32 am #

      Good points, Jodi. You have indeed been fortunate with your outcome, but you still live every day with something that non-patients never do: the reality that the biggest risk factor for heart attack is having already had one. So yes you do have a pretty good idea! (Readers: Jodi’s “heart attack stun” story is also here).

      Like

  19. Sunny December 17, 2013 at 6:38 am #

    I would love to be included in my treatment, let alone in a conference!

    What a remarkably astute post, yet again!! I wonder where these docs are who actually work WITH a patient instead of telling them what to do, i.e. “Take this drug and come back in 3 weeks.” And I am left to research what this drug will fix and what it will harm.

    Color me discouraged….

    Liked by 1 person

    • Carolyn Thomas December 17, 2013 at 8:11 am #

      Thanks Sunny – it sure can feel discouraging, which is why it’s important for patients to put our hands up, speak out, ask questions, remind our care providers to see us as whole persons, not just an ailing organ or a reason to reach for the prescription pad.

      Like

  20. JetGirl December 17, 2013 at 6:37 am #

    Carolyn,

    I could not agree more with your topic! We do not KNOW until it is our life on the line day in and day out what being a chronically ill patient REALLY is.

    And all the talk in the world cannot compare to the experience.

    And now that I am chronically well?? It feels fraudulent to even try to represent the horror of those four and a half years.

    JG

    Liked by 1 person

    • Carolyn Thomas December 17, 2013 at 8:04 am #

      Hello JetGirl and thanks for your perspective here. The difference between your patient story (which I know because I’ll be featuring it here for my readers in the New Year) and non-patients is that you “get it” in a way that non-patients never will. Your voice is very important because you can remind care providers how easy it is to miss a diagnosis for four and a half years of “horror”. And I am so glad you are now a ‘chronically well’ person!

      Like

  21. Ruth December 17, 2013 at 6:29 am #

    Your article reminds me of the movie “The Doctor” played by William Hurt. The egotistical Dr who snubbed his nose at his patients.

    My youngest daughter has been ill from infancy and yet I will never really know the feelings of hopelessness she has felt through her 43 yrs. of pain and agony with her disease.

    Not one of us can be a “patient” of another’s disease or illness even if we are a patient of our own disease or illness. So “nuts to you” who say we are all patients.

    You are not of our world. You are an outsider and have not entered the door to know or understand the word “PATIENT”!

    Liked by 1 person

    • Carolyn Thomas December 17, 2013 at 7:56 am #

      Oh, that movie should be required viewing in med school! Very powerful indictment of how unintentionally ignorant health care professionals can actually be when it comes to a patient’s specific reality. I disagree, Ruth, that you “will never know the feelings of hopelessness” your daughter has felt, however – you’ve had a front row seat to your own child’s suffering, and 43 years must surely be the next best thing to suffering yourself.

      Like

  22. MettaMarilee December 17, 2013 at 6:25 am #

    So true. It’s important to get this message across.

    I was a nurse for many years and had family members who were ill that I advocated for, but I realize now that until I developed a complex chronic illness I really didn’t understand what it meant to be a patient.

    Liked by 1 person

    • Carolyn Thomas December 17, 2013 at 7:46 am #

      Good point, Marilee. It’s really only when we hear that diagnosis ourselves that we realize how little we understood before now.

      Like

      • MettaMarilee December 17, 2013 at 10:45 am #

        The biggest learning for me was how vulnerable I was and how little power patients have had. I had some idea of how to navigate the system and where to look for information, yet I still faced barriers, felt powerless, and was confused by the lack of coordination for chronic conditions. That is hard enough to deal with as a care provider or family member, but as a patient, add fatigue and other symptoms of illness and you feel very helpless.

        Liked by 1 person

        • Carolyn Thomas December 17, 2013 at 11:07 am #

          You have hit the nail on the head, Marilee. Patients ‘get’ what you’re talking about.

          Like

  23. Dr. Anne Stohrer December 17, 2013 at 5:13 am #

    Absolutely spot on!

    Liked by 1 person

Trackbacks/Pingbacks

  1. Yvonne - October 9, 2015

    […] een jaar geleden las ik dit blog: ‘We are all patients. No you’re not’ https://myheartsisters.org/2013/12/17/we-are-all-patients/ verplichte leeskost voor iedereen die zegt “zijn we niet allemaal soms […] (translation:‘compulsory reading for anyone who says “Are we not all sometimes patients?”)

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  2. Rebecca J. Hogue - September 28, 2015

    […] an engaged patient, my experience is all America. Sure, I’ve been a patient in Canada, but as Carolyn aptly puts it, my acute care episodes within the Canadian healthcare system don’t qualify me as a patient […]

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  3. Rebecca J. Hogue - September 26, 2015

    […] Carolyn Thomas of @heartsisters explains it well in her post: “We are all patients.” No you’re not. […]

    Like

  4. Medivizor - May 21, 2015

    […] Some argue that a patient is a person living with a chronic condition, not just someone who sees a physician for a sore throat…. Carolyn Thomas makes a distinction between the acute and chronic patient…[…]

    Like

  5. Hcldr - September 7, 2014

    […] “We are all patients – No you’re not”, Carolyn Thomas, December 17 2013, https://myheartsisters.org/2013/12/17/we-are-all-patients/, accessed September 07 […]

    Like

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