Navigating Dismissive Doctors When You Have a Chronic Illness

I had an appointment with a specialist recently, but I could have been replaced by a blank wall, because she didn’t listen to anything I was saying.

“I’ve been seeing a naturopath for almost a year, but the treatments haven’t been helping,” I said.

“Well, it seems like you and your naturopath have those symptoms under control,” she said a few sentences later.

“The physiotherapy hasn’t been working,” I said.

“That sounds like it’s caused by tight muscles, which physiotherapy will help,” she said.

The doctor was friendly and her voice was pleasant. She wasn’t cruel, pushy, or antagonistic. However, she seemed to have formed an idea of what my diagnosis was, and nothing I said was going to sway her from that. 

Deciding how much I advocate for myself is always a struggle, because if you push too much, you get written off as a problem patient who complains too much. But if you don’t push enough (which is usually my problem), you don’t get the treatment you need. Sometimes, I don’t even notice my symptoms have been dismissed until after the appointment is over, because appointments fill me with such anxiety that it’s difficult to think straight.

Then there’s the extra layer of being a woman and trying to describe your pain. If you are emotional about it, you get written off as hysterical—the pain can’t possibly be as bad as you’re describing. But if you’re stoic about it, you get written off, too—the pain must not be that bad since you’re so calm. There’s no right answer, and doctors don’t seem to be prepared to deal with chronically ill patients. I can’t help wondering why, especially when I compare my experience with alternative health specialists.

“Why aren’t doctors more equipped to deal with chronic pain and illness?”

I’ve been seeing a naturopath and a physiotherapist for about a year. They have been kind, caring, listened to all my symptoms, and looked at the body as a whole instead of trying to slap a bandaid on a single issue and then move onto the next. Neither of these treatment paths have been very effective on my physical symptoms, but my mental health has vastly improved simply by having someone in authority telling me that yes, my pain is real, and listening when I explain what I’m going through and what I need. After seeing these two specialists, I realized this is how medical doctors should behave.

Every chronically ill or disabled person I’ve talked to, in person or on social media, has a similar story. They’ve all felt dismissed at least once, usually much more often than that. Many patients have to go through doctor after doctor before they finally receive the diagnosis and care they need, if they ever receive it at all. You can check out the #PatientsAreNotFaking hashtag on Twitter to see tens of thousands of patients tweeting delayed diagnosis stories and how they’ve been dismissed by healthcare professionals.

Why aren’t doctors more equipped to deal with chronic pain and illness? Why don’t they seem to want to help? Isn’t that their job?

As I thought about this more and did some research, I realized that the answer is right there in the question. 

When asked why they chose their profession, these doctors and these doctors replied with statements like, “to be able to help is very rewarding,” “to empower patients,” “it’s a great privilege to be able to help people,” and “to feel job satisfaction.”

“I’m always afraid of challenging a doctor directly because then they might write me off as a problem patient.”

The trouble with chronically ill patients—they keep coming back. Whatever the doctor may have suggested in the past didn’t help. The very nature of chronic conditions—that they are chronic—seem to be difficult for doctors to accept. It’s easier to write off patients as whiny, liars, hysterical, or just out to get high on meds than it is for them to accept that they cannot cure someone and need to consider how to help them manage their condition or get a proper diagnosis instead.

And not all doctors choose their careers to help people. Physicians are highly esteemed in our society, and their positions come with great salaries—both things can be draws to people choosing this field. Some also love the science, the challenge, and problem solving. But chronically ill patients are not puzzles to be solved—we’re real people, with real emotions who need to be heard.  

One of the most frustrating things about dismissive doctors is when they decide that, because your tests aren’t showing anything is wrong, the problem must all be in your head. So they send you to a therapist and write you off. Or when they deny you pain medications because they don’t believe you. Or when they only want to look at one problem and slap a bandaid on that instead of considering what might be causing all these different issues you’re dealing with. Or when they’re biased because of your age, race, or gender.

I will note that not all doctors are like this. Some are wonderful, sympathetic, and advocate for you. But they seem to be the exception instead of the rule, and that shouldn’t be the case. I wish that they spent some of their time in school being trained by chronically ill people to better serve that demographic.

I don’t have the perfect answers for how to deal with dismissive doctors, but here are some things that I’ve tried with some success:

  1. Bringing my husband with me to doctor appointments. Some doctors seem to listen better when there is a man in the room corroborating my symptoms.
  2. Asking questions. I’m always afraid of challenging a doctor directly because then they might write me off as a problem patient. So I ask questions like “What else might this condition be if it’s not what you think it is?”, “What do I do if this gets worse?”, and “What else do you suggest I try?” Sometimes this helps them consider other options that they don’t suggest otherwise.
  3. Asking for a referral to a specialist. Chronically ill patients tend to do a lot of research themselves when doctors can’t figure out what’s wrong with us. My naturopath and physiotherapist recently suggested I might have endometriosis, something none of my doctors have ever considered. Looking at the symptoms, I realized I have almost all of them. My doctor didn’t seem keen, but when I requested a referral, she simply said, “Who do you want to see?” and arranged it.
  4. Writing down what I want to say beforehand. I get super nervous at appointments, forget to mention symptoms, and let myself be rushed out if the doctor seems busy or is particularly dismissive. It helps if I write down everything I want to talk about, including a list of my symptoms, beforehand. 
  5. Persevering. Real talk, now—sometimes I do give up. For stretches of time, I’m too exhausted to see more doctors, too tired to research symptoms, too depressed to keep trying when doctors are difficult and tests always come up negative. And that’s okay. It’s okay to just manage my condition as best I can. Eventually, I book an appointment or consider a new specialist and try again. It’s exhausting. But no one else will do it for me, so I have to persevere if I want answers.

Have you seen an awesome doctor who made you feel safe and listened to your symptoms? Have you been dismissed by a doctor? What have you tried that’s worked for you?

And here’s your reminder that you know your body better than a doctor does. You haven’t done anything to “earn” your illness. You don’t deserve to be dismissed. What you’re experiencing is real.

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About the Blog

Allison Alexander is the author of Super Sick: Making Peace with Chronic Illness, the Editorial Director at Mythos & Ink publishing, and a co-host of the Wayfarer’s Guide to Worldbuilding podcast. She regularly writes about how disability is represented in fiction and reviews sci-fi and fantasy books.

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