An orange, empty pill bottle, seen from the top without the lid

Respecting Patient Experiences

I have always hated when people try to tell me how I think.

Notice: I didn’t say that I hate when people tell me what to think or how to think. I hate it when people try to tell me how I think. I hate it when people try to put to words what they think is going on in my head.

I used to find it an aggravating invasion of privacy. I would become irrationally (if quietly) angry when a peer would generalize how they thought I would act — my favorite example: you’re so straight-laced (I wasn’t sexually active or on drugs) that I thought we couldn’t be friends — and I would be immediately distrustful of any professor or teacher who would read essays I wrote, since it was a window into how I thought and would prompt them to form opinions about my opinions.

Perhaps the reason I always hated when people would try to tell me how I think was that I very often found that their guesses were wrong. If we’re talking about socioeconomic status and access to resources in class, the professor assumes my hesitance to participate is my discomfort with confronting the idea that privilege exists and that I might benefit for it*; rather, my hesitance to participate stems from actually being a part of the population being discussed, and I’m not sure I want to get into a conversation about growing up more than 20 miles from any grocery store, elementary school, or clinic. Or, perhaps when they heard that I live with a chronic illness, they immediately assume that they know how I interact and identify with that illness: that it’s a crutch a refuse to lean upon, a concrete slab on my shoulders that I refuse to let drag me down.

But that’s not how I think about my illness at all.

So, when I see my peers — all these future medical professionals — ask leading questions to patients, assuming that they know how that patient thinks about or identifies with their illness?



And I tell them to stop.

I understand my visceral reaction is a bit too irrationally angry. I don’t act on this anger. I’m tactful, polite, invested in helping, not berating, my peers. I certainly have a lot to learn and I don’t come at this from some sort of high ground. In fact, I don’t really ever say the words “stop” — instead, I offer insight into my own experiences as a patient, point out how the patient (or standardized patient, an actor that we practice our skills with) seemed uncomfortable with certain questions, and make a lot of “I” statements: I would, I think, I feel, I have personally experienced…

But what I love about blogs is that I sometimes get to rant. And this isn’t a rant, but it is a brief shout into the void: don’t assume you know how your patient feels about their illness.

One of the many problems with our care for “the sick” is seeing “the sick” as embodiment of sickness — and not as people who are people like anyone else, except they have a sickness.

Case in point: I recently saw a panel of patients who were asked the same question: what time, in your childhood, did you realize you were different from other kids or couldn’t do everything that other kids can?

This question wasn’t preceded by any introduction other than their names. No one was asked, “Tell me a bit about yourself.” No one said, “First, can you give us an idea of what your life looks like right now?” Rather, these patients were immediately asked to describe a time in their life that (if they ever felt it) is expected to be a time of heart-brokenness, downed spirits, trauma, or isolation.

Immediately, they were positioned as different.

And that’s not to say that these questions don’t have their place. Personally, it can be very helpful and humanizing to tell my story, especially what it meant to grow up with this condition. But I usually only tell these stories after people see me a full and complex human beings, much like them. I am first a plant-lover, a cat-lady, an aspiring author, a future medical professional, a girl from rural Texas, a lover of the color yellow. Then, and only then, will I allow “sick girl” to be added to that list.

It is important, of course, that we as future medical professionals know how certain diseases and conditions affect someone’s life. For childhood diseases, it is important to know how it can affect friendships, development, and family life. However, leading questions have no place in this exploration. You cannot ask a question that expects a negative answer. You must ask questions that allow for the full spectrum of experiences and emotions — negative if it is negative (which can often be the case), but also positive, or neutral, or anywhere in between.

Don’t ask a patient when they first realized they were “different from other kids” or “couldn’t do what other kids could do.” Instead, ask questions with more room for full expression: “Can you tell me about how you interacted with this disease as a child? How this disease, if at all, affected your childhood?”

Ask a patient about how their disease has taken away from their families and they’ll talk about economic stress and tension; ask a patient about how their family interacts with their disease and they’ll talk about close bonds, the love of their parents, the helpfulness of their children, and also the economic stress and tension. Make sure that the questions you ask don’t cut off an important aspect of your patients’ lives — especially the parts that don’t fit into your box of what illness looks like.

Humanity is complex. Sickness doesn’t immediately make everything else — family life, sex, friendships, life — inherently sad. It also doesn’t make everything inspiration porn, where everything is happy and romantic in dealing with this one, monolithic obstacle.

For me, I always wonder how do I, as a doctor who is also a patient and is often sick, work with my peers to make sure that all these future doctors around me see their patients as complex beings?

It’s a hard question, because everyone around me is acutely empathetic. This isn’t a problem with a lack of empathy. It’s the fact that some threads of pity come with this empathy, and these threads of pity sometimes lead to threads of stereotyping — seeing patients as an embodiment of struggle and sadness — which sometimes leads to threads of paternalism and erasure of complex human experiences.

It’s also hard because, sometimes, patients’ stories are really sad. Any reaction by the person with the condition is valid. If they are sad all of the time and think of their disease as something very separate from them, something like a curse — that’s fine. If they are more martyristic, thinking their condition is a test from God, relying on their faith and sometimes trusting in God more than western medicine — that’s fine. If they embrace their identity as a medically disabled person and say that they wouldn’t give their condition up for anything, since it has influenced who they are — that’s fine too. If they prefer person-first or non-person-first language — that’s fine. Experiences are varied and our reactions to them are varied, too. All of this is fine.

But you cannot learn about these experiences by asking leading questions. In what ways do you feel like an inspiration? (bleck) In what ways has this negatively impacted your ability to be a mom? Do you ever question your faith?

No. No no no.

For me, I personally hate it when someone talks about my illness as if it is a crutch I never let myself lean on (real quote: “Some people would milk it. You rarely ask for accommodations”). I hate it because it’s actually a problem that I don’t ask for accommodations as often as I should, partly due to all the messages I received growing up that said that asking for accommodations made me a sap on the system, or that my accomplishments would be less deserved if I registered with a disability office. I hate it because I don’t see it as a crutch, or even a bad thing, since it has drastically increased my empathy and understanding of what it means to be a patient — something that will prove invaluable as I move forward with my career. I hate it when people try to put words in my mouth. I hate it when people try to tell me how I think.

So here’s what I do think: that we should never, ever do the same to the very patients we promise to help heal.

*I certainly do benefit from privilege, and lots of it, just not in the case of this example.

Photo by Nick Harris1 on / CC BY-ND

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