A Self-Blaming Patient

The thing about patient blaming is that it can turn into a form of gaslighting: if you do it long enough and often enough, you and the patient both will start to believe it.

A few weeks ago, Kevin, a 38-year-old man came to see me for a “rash” he had had for over 15 years. When I came into the room, I recognized it was no small rash, but severe psoriasis. There are a few rashes that one can almost “spot diagnose,” plaque psoriasis is one of them: thick, white scales covering pink, itchy areas with well-defined borders.

“Doc, I screwed up,” Kevin said as soon as he saw me walk in the door.

From the way he was sitting, with his head cupped in his hands and his elbows on his knees, it was obvious that Kevin was distraught. The other thing that demanded attention about Kevin was his general appearance. Kevin would be what we called “unkept”: he wore torn-up jeans (not the fashion statement type, but actually worn out); there were food residues on his shirt; and he smelled like he hadn’t showered for days.

“I screwed up.”

When it comes to severe psoriasis, there are many terms I hear patients say. “I stay up all night scratching myself silly.” “I can’t do more creams, I need something stronger,” are some common ones. Sometimes, patients complain about how small the tubes of cream they were prescribed before. But “I screwed up” doesn’t typically make the list.

“Can you tell me why you said that?” I asked. Skipping introductions was not very AIDET of me. But Kevin looked like he needed us to cut to the chase.

“Every time I get dirty, I break out in this rash. I think I must be allergic to dirt.” Kevin sounded matter-of-fact. “My furnace broke last week, so I had to go into the crawl space to fix it! I should have asked my buddy to do it! I should’ve known better!” Kevin briefly looked up at me while explaining what happened before going right back to his defeated gesture with his face in his hands.

Dirt causing psoriasis isn’t the most absurd false belief I’ve heard of over the years of being a doctor (or a person). Some may say that a persistent false belief despite clear evidence of the opposite constitutes a delusion. But I am not sure if such “clear evidence” had been available or presented to Kevin before. Something told me that Kevin was not delusional. At least that was not the whole story.

“Kevin, who told you that?” I followed my hunch.

Turned out that the first time he had a flareup of psoriasis 15 years ago was after he fell while hiking. He scraped his knee, which did get dirt on it. Shortly after that, he started to have a full-body rash, starting from his injured knee. While psoriasis lesions like to form at the site of injury (the Koebner phenomenon), psoriasis isn’t caused by the injury, or the dirt on the injury. But I could see how Kevin made the logical connection between the two.

My immediate reaction was to correct this false belief, as I hoped many before I had done: “Kevin, listen,” I paused to wait for him to look at me, “you getting dirt on your skin didn’t cause you to have this condition. What you have is called…”

“That’s not what the doctor said when I first had the rash!” Kevin didn’t let me finish.

“I know but…” I tried to continue.

“I’ve had this for 15 years. Believe me, I KNOW what causes it. I JUST have to be more careful.” Kevin interrupted me again. And this time, he raised his voice and almost sounded annoyed.

If there is one thing that’s always made me angry immediately it’s a man who wouldn’t let me finish my sentences. And this anger response got even worse after I became a doctor. Perhaps part of it is my ego. But a lot of it is being a woman in medicine.

Medical schools started to accept women students in the 1870s. Yet their training was substandard to men and they could only work in insane asylums as assistant physicians. Today, women physicians are still more likely to be mistaken as nurses or social workers (which, in a sense, is a compliment if you really think about it). In general, women are more likely to be interrupted when they talk, often by men. This certainly is true in the traditionally male-authored and dominated field such as medicine.

So, being interrupted by a man triggers me. In my younger years, I have even walked out of an exam room when the interrupting behavior was very bad. The male patient in that situation kept referring to me as “Miss” and my male counterpart as “Dr.” And he wouldn’t make eye contact with me when I talked, nor would he let me get a word in.

If I could be completely honest (which, in a personal blog seems like the only way to be), Kevin’s interruptions and his almost yelling got me mad. And I felt the urge to yell back. But in recent years, I have been working on humility both in and outside the exam rooms. Plus, if my Twitter (otherwise known as X) polls #AskThePatient have taught me anything, it is that it’s not enough to only hear what patients say. You have to really, really listen.

So, what was Kevin saying?

“I’ve had this for 15 years. Believe me, I KNOW what causes it. I JUST have to be more careful.”

This wasn’t some disinhibited misogyny like my brain wanted to assume defensively. This was something else. And this something else wasn’t about me at all.

I’ve had this for 15 years. Interpretation: I’ve suffered for a long time, perhaps to the point of desperation.

Believe me, I KNOW what causes it. Interpretation: I need someone to believe me when I say I know my body.

I JUST have to be more careful. Interpretation: There has to be something I can do to relieve my suffering, I just need to find it.

In other words, Kevin needed to believe that he wouldn’t have to be tormented by this diffuse and painfully itchy rash for the rest of his life. I work in an underserved area where, before my arrival, dermatological care for those without private insurance was virtually nonexistent. And severe psoriasis isn’t something primary care clinicians are necessarily comfortable managing. Looking through Kevin’s charts, he had had many visits for his psoriasis. Sometimes it was correctly diagnosed as psoriasis. Most other times the notes said, “rash,” “allergic reaction" or “tinea corporis” (ringworms), which were all common mimickers of psoriasis. When steroid creams were prescribed, they were of a very small quantity — not nearly enough to cover his whole body.

So, on one hand, Kevin had been frequently misdiagnosed. And I am not surprised that probably multiple times he was told he indeed had allergies to something. Since Kevin had the firm belief that it was dirt that made his rash come on, likely he offered that explanation to the clinicians as soon as they walked in the door, just like he did to me. Then confirmation bias kicked in. Voila, Kevin’s false belief was solidified by the white coats time after time.

But there was another reason why Kevin had been self-blaming. And it’s one of medicine’s not-so-well-kept secrets: patient blaming. Encounter after encounter, Kevin had been blamed by the medical team for not being careful enough or not taking care of himself. And for someone who looked as “unkept” as Kevin, it was easy, even “natural” to do so.

Free Stock photos by Vecteezy

More than half of patients feel shamed or blamed by their physicians. Being blamed by anyone — a friend, a family member, even a stranger online — results in significant psychological stress. Now imagine the blamer is your doctor, in front of whom you are totally powerless and vulnerable, and whom you trusted to help you feel better. Not surprisingly, one in five patients leaves their doctors for this reason.

How about the remaining four out of five patients? Though there isn’t clear data on this, it isn’t hard to imagine that some buy into this illogical idea that their medical condition is their fault. Why? Because people pay to hear the opinions of a doctor — someone who went through a decade of higher education to do what they do. And if their opinion is, “This is your fault,” it must be true. Right?

Wrong.

Other than being unethical, unhelpful, and untrue, patient blaming is also lazy medicine. In Kevin’s case, for instance, it was (likely) him who offered the “I fell into some dirt therefore now I have a full-body rash” theory. Then the clinician anchors onto this presented theory without exploring other possibilities. This is termed anchoring bias, and it facilitates premature closure of clinical reasoning — the very thing that patients pay us to do (so to speak).

At the same time, if the solution is simply “just don’t get dirty next time,” then the responsibility of improving health outcomes falls on the patient instead of the physician-patient team. And when patients don’t get better, it must be because they haven’t been diligent enough to avoid dirt. The prescription is, naturally, “try harder this time.” Rinse, then repeat. This insidious form of recycling false information gaslights the patient into self-blaming. And next thing you know, they become “delusional.”

The diet culture is the master of this tactic. The multi-billion dollar industry relies on people’s assumption that if they aren’t thin yet it’s because they haven’t adhered to the diet and exercise regimen sold to them, even though there is a large body (pun intended) of evidence showing that long-term weight loss is almost impossible. Common gaslighting slogans we hear diet culture influencers say are: “You are not tired. You are uninspired.” “Carbs are the enemy.” “Do this if you want your summer body!”

To be fair, unlike diet culture where many of the companies financially benefit from selling a lie, most doctors don’t blame patients consciously or intentionally. In fact, as an insider, I can attest that there is a patient-blaming culture in medicine that is really to blame for this harmful phenomenon. This culture is deep-rooted in the history of medicine and passed down to generations of practitioners. Assuming patients haven’t done what they were told therefore sabotaging their own clinical progress is a tale as old as medicine itself. Hippocrates urged physicians to “keep aware of the fact that patients often lie when they state that they have taken certain medicines." This absurd assumption that patients somehow don’t want to get better is still alive and well in today’s medical education (thankfully, in a more subtle form).

“Ok, Kevin. I believe you.” I meant it, too. I didn’t believe the theory of dirt allergy. But I believed that it had been the truth for Kevin for many years. And that is not something I could change the first time we met.

“I still think you have psoriasis. But you don’t have to agree with me. Let’s try something. And if you don’t get better, we will add to the treatment plan or try another approach.” By now, I was squatting on the floor so I could be at Kevin’s eye level when he looked up.

“OK. Am I seeing YOU next time?” Kevin asked with a weird emphasis on “you”. For a moment, I was pretty sure he wanted nothing more to do with me.

“If you want, I will follow up with you until we get you better!” Totally unsure how this first visit went for Kevin, all I could do was make a promise.

“OK, doc. I will give this a try and we will see in a couple of months then.” Kevin went on to apologize for being “argumentative.” I dittoed what he said. Finally, I think we were on the same team. I explained the risks and benefits of the treatments I offered and I was not interrupted by Kevin once more.

It occurred to me after my visit with Kevin that it really didn’t matter what the “truth” was when it came to a diagnosis. It mattered more whose truth it was. We all just want to feel better and get on with our lives. And in the end, even though Kevin didn’t buy into my diagnosis, he agreed to give what I offered a try. So in a way, perhaps he did believe me.

I must have looked perplexed when I came out of the exam room. Because my medical assistants, who were both sharp observers, asked me: “Doctora, was everything OK in there?”

“Everything was fine.” I woke up from the daze and a thought came to me. “Rule number one for our team from now on,” I took this opportunity for a team huddle, “whatever we do, we do NOT blame patients for what they have.”

“I thought rule number one was to never run out of snacks?” One of my smart-ass assistants said.

Well. That, too.

Disclaimer: patient identity and case details have been significantly altered to protect confidentiality.