As my husband and I learned this February, having a bad doctor can be deadly.
First, before we get in too deep, I just want to acknowledge that no doctor is perfect. Everyone makes mistakes, and tragically, even a mistake made in good faith, with the best medical practice, can still result in death. Some diagnoses can be notoriously difficult to get right, taking months or even years to nail down. And as I’ve written here before, every diagnosis is merely a hypothesis, a working theory. But a good doctor knows that, and a great doctor is always open to revising their working theories.
When I picked my first official Primary Care Provider (PCP), I was 30 years old, and I thought I’d done everything right. I read books about how to choose a doctor. I pored over the Seattle Met’s Top Doctor lists, where medical providers voted for their best colleagues. My ideal doctor fit all the criteria, including being board certified. Her patients had left swaths of happy, grateful reviews online. So when my husband was referred to an orthopedist who was highly regarded by his peers, well reviewed, and considered one of the top regional specialists in his field, it checked all my boxes, and I again felt confident we were in the right hands.
Except he wasn’t.
And neither was I.
The real test of a doctor isn’t whether they have a good bedside manner. It’s also not their popularity. And it sure isn’t whether everything goes smoothly when they diagnose, prescribe, and treat a condition that turns out to be exactly what they thought it was.
The true test of a doctor is what they do when they think they know what’s going on, and then they’re confronted with evidence that they don’t have a clue.
“Confidence makes you stupid,” Hannah Gadsby says in her latest Netflix special Douglas. It’s true for teachers, for policymakers, for activists, and for doctors. If a doctor is sure they’re right, they’ll find ways to dismiss evidence to the contrary. And that can cost you your life.
Now that my husband and I have a PCP who is always open to revising her working theories, I know better. Reviews, likability, board certifications—they’re nice. But if a doctor can’t listen, ignores new evidence, and does nothing while your health disintegrates, it’s time to break up.
Here are nine warning signs I wish I’d known five years ago, as my migraines transitioned from episodic to chronic, and long before my husband’s life was threatened by a pulmonary embolism:
1. They don’t want to hear how your health is impacting your life.
My providers didn’t want to know if I was able to hold a job through my migraines. They didn’t ask if the migraines were keeping me from doing the things I wanted to do. In the end, I realized it was because they didn’t want to know. The fact that my life had fallen apart, my income had plummeted, and I was barely able to work (from home) 15 or 20 hours a week was crucial information. It also would have indicated that their treatment plan had failed. If a doctor isn’t even willing to check their hypothesis against the evidence, just in case it reveals cracks in the foundation, they’re not up to the job.
2. They refuse to adjust the treatment plan, even if symptoms are worsening.
My husband was incredibly nervous before his appointment with the orthopedist. His pain was worsening, and so was the swelling. I’m not a trained medical provider, but I’ve had my fair share of joint injuries, and even I knew it wasn’t right that his whole limb continued to swell months after an injury. We were both concerned.
Yet when he went in, the orthopedist gave his leg a cursory exam. When Josh told him the pain was worsening, the doctor said, “The pain you’re experiencing is out of proportion with what you should be experiencing.” Surgery wasn’t an option, the pain couldn’t be that bad, and he’d just need to tough it out and keep going to physical therapy. When Josh pointed out the swelling, he responded, “The only reason you’d have swelling is if you’re doing lunges or squats. And since you’re not doing that, there’s no reason there should be any increased swelling.” After telling Josh they were sticking to the original plan, he simply walked out of the room.
It turned out the physical therapy was breaking up his blood clots and helping them spread throughout his body. Three days after that appointment, a nurse practitioner immediately spotted that the swelling was due to blood clots, and Josh was hospitalized with a life-threatening pulmonary embolism.
3. They run out of ideas fast.
In 2019, I started collapsing. First, my heart would flutter. I’d feel nauseous, then weak. Next, I’d break into a cold sweat. My legs would buckle. I’d go down, as my vision dimmed and went black. I never lost consciousness completely. But I’d be unable to move or even speak for minutes at a time. When I was able to operate my body again, it was only barely. A bad migraine set in, and I wouldn’t be myself for days.
My doctors checked my heart with an echocardiogram. Healthy. Blood pressure. Healthy. MRI. Normal.
Then that was it. There were no further investigations into anything. At all. Only this month, two years later, did I learn from my new provider that a B-12 deficiency, though rare, can also cause heart palpitations. No one looked at that. No one looked at my diet, my red blood cell count (I’ve been anemic most of my life), or anything else that might cause fainting or weakness.
Instead, my neurologist said hey, I think it’s the migraines.
I thought so, too, but I wanted to be sure.
Too bad. Nobody had any other ideas about what else it could be. Which I’ve just learned is bullshit. There are loads of possibilities. My new provider just met me, and she has ideas for what specialists I should see and what we might need to test. It’s not a small thing, to collapse without knowing when or where it will happen. I had to give up riding my scooter. I gave up driving completely. My life shrank still further. And everybody on my medical team seemed just fine with that.
4. They talk up new treatments while sharing none of the limitations.
Two of my previous doctors spent a couple years talking up injectables to me. I finally broke down and decided if it was so great, I might as well try. They told me that it had helped “many” of their patients and made a “huge difference” for them. But unfortunately, they hadn’t told me that for 50% of patients Ajovy only produced a 30% or smaller improvement in symptoms. When it did nothing but give me a rash, month after month, I was devastated. I had been so sure it was going to help. After all, that’s what I’d been told. I plunged into a deep depression and lost the heart to try any new treatments for over a year. Chronic illness is exhausting. Getting your hopes built up, then dashed by being handed unrealistic expectations is not only unsustainable. It’s cruel.
My current provider? The new supplements she asked me to try “made a big difference for some of my patients, and for some of them, it had no effect.” When I looked it up, that was about right. I had roughly a 50/50 chance of a 50% improvement based on a very small (and thus less reliable) number of studies. Realistic expectations can give me the stamina to see out the marathon of chronic illness.
5. They give you only a few seconds to think of questions or concerns before they’re out the door.
I don’t know about you, but I’m never at my sharpest in a doctor’s office. There’s first the early wake-up time. Then, there’s the long commute by bus or car, anywhere from 30 minutes to two hours. Next, there’s paperwork. And finally, the string of rooms (waiting rooms, exam rooms) that are all harshly lit and ice cold. By which point, I always have a migraine aura, contemplate my mortality, and wish I hadn’t come.
By the time the door finally swings open and the doctor sweeps in, I just want it to end as quickly as possible. After a series of questions, a quick blood pressure check, a few more questions, and a recommendation to continue the same treatment plan, I’m asked if I have any other questions. I’m usually so bewildered by the “other” (Had I asked a question already? If so, when? What was it?) that I shake my head and the doctor is gone. And I only remember as I’m putting my clothes back on that I had something I wanted to ask. And I only remember what that was once I’m back home.
Maybe this is part of the PTSD, where being alone in a room with a stranger is a frightening experience that shuts down all but my most basic brain functions. Maybe it’s the vulnerability of being locked into a maze where I’m told to strip and submit my body to whatever touching other people plan to do to me (another trigger for survivors of sexual violence). Maybe it’s the anxiety of knowing I’ll have a migraine once I get home. Who knows? But the 60 seconds at the end of the appointment when I’m supposed to ask the questions I had carefully memorized just aren’t enough.
6. They give up easily.
A bad doctor stops trying to figure out what’s wrong and settles for well, you’re still breathing, so I guess that’s good enough. Absolutely, chronic illness can burn out even the most persistent, caring providers. It’s hard on everybody to not know why things are getting worse and to feel helpless. But the right doctor will either rally and keep investigating or refer you to someone new. A bad doctor will simply keep going as if everything’s fine, even as your sanity and functionality nosedive in front of them. If you even smell resignation in the air, take the time you need, pack your bags, and go looking for someone else.
7. They’re too friendly.
Oversharing is a big no-no in most professions. It’s especially unhelpful when there’s a power imbalance, as between a boss and an employee or, yes, a doctor and their patient.
For years, I thought my doctor was simply nice. She had a pleasant, cheerful bedside manner. She asked if I liked my job, how my husband was doing, told me about her excitement over a visit from her children. As someone who’d become mostly housebound, I was starved for social connection. I appreciated our chitchat.
But then, during one of our last appointments, she shared a story about an old friend of hers from college. She had finished the exam and was writing up the notes for me when she told me that a few years ago, her friend had her carpets cleaned. This woman was an amazing doctor, a kind woman, active volunteering her time in the community as well. But she did notice the carpet cleaner had left a mess behind, so she called them back to request they come clean up the mess. The carpet cleaner returned. And murdered her.
“I just don’t get it,” my doctor said. “It’s not like they weren’t going to find out who did it. Right? Why would someone do that? Just over some dirty carpet? Who would kill someone over that?”
Her story left me deeply uncomfortable. It wasn’t just the horrifying content, or the obvious fact that she needed to be discussing this with a therapist, not a patient. It was more the alarming familiarity with which she shared this deeply personal trauma and handed it off to me. I’ve lost two jobs, can no longer support myself if I needed to, have considered suicide as a way out of this nightmare—how can you possibly think it’s okay to put this on me?
8. They leave you feeling that if only you constructed a better argument or communicated better, they’d take your symptoms seriously.
Run. If ever a doctor leaves you feeling this way, run straight for the exit and do not come back.
I wasted years fantasizing that if I just told the right story, in the right words, at the right moment, they’d start referring me to better care providers. When I asked for a referral to an endocrinologist to ensure my hormone levels weren’t contributing to the migraines, my ex-PCP simply asked, “Why?”
I was so astonished that this was her defense, it rendered me speechless. I was the patient, saying I don’t know what would make this better, but I want to get better. A physical therapist told me maybe hormones are playing a role.
Her “why” to me indicated that she didn’t know, either. And she wasn’t interested in finding out. She didn’t counter with a suggestion for a different specialist. She’d already made up her mind. Nothing I said was going to fix her fixed mindset.
9. They can’t say “I don’t know.”
The first provider who told me this was an acupuncturist running her own clinic. During our first consult, she sat down and took her time asking about my history, gathering my information, and discussing treatment plans. I already was in awe of her transparency and ethics when she told me, “For migraines, it can often help. But vertigo is a difficult case. I don’t know.”
Hearing those words, I realized I’d been holding my breath for a year. Finally, it felt like I could breathe again. Someone was willing to be honest with me about treatment outcomes.
It’s taken me nearly five years to find that again, this time in a PCP. When I mentioned that I’d tried magnesium supplements for a few months, she recently prescribed supplementing CoQ10 three times a day, 100 mg each dose, as well as 400 mg of riboflavin once a day. “They’re the best backed up by research,” she told me. “And for some of my patients, it’s dramatically reduced their migraines. But for others, it’s had no effect. We’ll have to see.”
That’s all I want.
Even the best doctors are going to mess up sometimes. They’re only human. But if they have good professional boundaries, if they invite you to ask questions throughout the appointment, if they are open to considering a variety of possible explanations and systematically rule out the worst ones first, if they’re transparent about the likely outcomes of treatment, if they believe you when you report that your symptoms are worsening and act accordingly, and if they’re open to revising their treatment plan and diagnosis, you might have landed a keeper.
Finally, if a friend is going through a health crisis and you want to be there for them, don’t come at them with your personal diagnosis and prescriptions. Just don’t. Save us all some time and energy, and recognize you don’t have the expertise to be doing that. Instead, if you really want to help, ask one simple question:
What is your doctor doing to get ahead of this?
And if your friend doesn’t have a good answer? Suggest they get a second opinion and give them a referral, maybe with your doctor, maybe with another doctor you’ve heard good things about. I only got diagnosed with chronic migraines because a coworker asked me this question and, unsatisfied with my answer, told me about a balance clinic she’d heard wonderful things about.
Failures, delays, and setbacks are part of the journey for many of us with chronic conditions. But we all deserve respect, courtesy, professionalism, and perseverance from our providers. And if they’re not giving you that? Maybe it’s time to walk. Chances are good that someone out there is willing to listen, support, and work hard alongside you. Maybe at the end of this road, my husband and I will each be where we started. But at least, with good providers, we’ll have peace of mind from knowing that we left no stone unturned.