Chronically Ill Tips: What To Do When a Doctor Isn’t Listening to You

I have been in pain for 17 years and diagnosed with chronic illnesses for ~10 years and man oh man have I spent a lot of time in medical offices. For those of you who need a quick recap, I spent several years in which doctors told me my ankle was fine but it turned out to be super messed up. Learning first-hand at 17 that doctors can be wrong (like, really wrong) has meant that I listen to and believe my body above what doctors tell me about it. And in the 10+ years since that surgery that proved I was right about my body, I’ve been proven right time and time again. Which also means that I have collected a list of what to do when a doctor isn’t listening to you, and I’m sharing it here in the hopes that it will help some of you going through this.

I am not a medical professional, but I am a professional patient. I have dealt with many, many doctors not listening to me or believing me. This is my advice for any patients going through a similar thing, but I do not have any insight into what a medical professional would advise for a similar situation. That being said, I hope that this post helps you.

There are many thing chronically ill people need to know how to do, and one is what to do when a doctor doesn't believe you. Chronic illness and chronic pain patient and Boston lifestyle blogger Kate the (Almost) Great shares her tips based on nearly two decades of experience.

Chronically Ill Tips: What To Do When a Doctor Isn’t Listening to You

Take notes at each appointment (word-for-word if you can) – This is something that can help you long-term and not necessarily immediately, but it can help. Taking notes helps prevent you from relying on your memory, especially because while you might know your memory is correct, you can show someone your notes from a previous appointment if they disregard what you’re saying. In your notes, it’s important to note correct information, so writing a correct overview of what the doctor is saying is more important than a word-for-word incomplete thought. That being said, if you’re able to write word-for-word what the doctor is saying, that is preferred because it can help that doctor remember what they said at a previous appointment.

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Bring someone with you to your appointments – This can be helpful for a wide variety of reasons. 1) They can provide an outside view of your symptoms to the doctor. For example, they could say, “It’s hard to watch Kate come home from work and be unable to do anything that just sit on the couch,” or “I’m worried that Kate is downplaying her pain in this appointment.” 2) Studies show that doctors take women’s pain less seriously and that of people of color even less seriously. (Some even believe that black people don’t feel pain as much as white people, which, yikes.) So even if the doctor doesn’t realize that they have an unconscious bias, it can be there. That means that, if you have a man in your life like your dad or your husband, it can unfortunately be extremely helpful to bring them in order to be taken seriously. 3) Bringing someone with you to multiple appointments can help support your interpretation of what doctors said or did at a previous appointment. I say “your interpretation” because your doctor(s) might refute your description of what they said or did at a previous appointment. Having someone with you who was there at a previous appointment can support your believe of what happened previously.

Chronically ill tips: preparing for medical appointments

Ask them to explain their reasoning more – Sometimes, doctors use complicated language that people without a medical degree don’t understand. And, sometimes, that language can mean that we think that they are disagreeing with us or not listening when they actually are. So asking them to explain their reasoning can help you figure out if what you think they’re saying is actually what they’re saying. If it is, asking them to explain themselves can also help you get information for future appointments. For example, “Dr. Smith didn’t want to prescribe x because he was worried about the side effects and my medical history,” or “Dr. Doe didn’t believe that I had [insert symptom here] so she didn’t want to run y test.” This is especially important because if you decide to get a different opinion (which we’ll get to in a moment) because a future doctor might ask you why that doctor decided on something or would/wouldn’t do something.

Ask them to note in your chart that they are refusing to do x against patient request – This is a great tip from amazing chronic illness patient and lawyer Matt Cortland. Basically, if a doctor won’t do something – won’t order a test, won’t prescribe you a medication, etc. – ask them to note in your chart that they are refused to do something against your express wishes. This is especially good advice if they are refused to give you pain medication. Asking them to note that they’re doing this against your wishes can make them pause and think about if they really want to deny you pain medication, or if they really want it to be written in your medical file that they refused to do so. It might not change anything, but it could also indicate to future doctors that you wanted a test or a medication and this particular doctor refused to give it to you. Which, to be completely honest, could get them in trouble with their superiors if it turns out you really needed whatever they refused to give you.

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Get a different opinion – Whether you change doctors entirely or see one for a one-off appointment, you should definitely get a different opinion. Ask the other doctor the same questions you asked the first one and, of course, take notes. This way you can directly compare the two doctors’ opinions.

Contact a patient advocate – Some hospitals or clinics have patient advocates whose job is to help patients. If you are concerned about how a doctor is treating you, you should 100% contact a patient advocate. While this isn’t true for all hospitals or clinics, you can ask them to come to your appointment with you to help bridge the gap between you and the doctor. Alternatively, you can contact a more informal patient advocate (like me) online to ask for their opinion. For those, though, start by asking if you can run the situation by them. Don’t start by messaging the situation. Informal patient advocates have a lot going on between their own health and their life; they might not be in a position to help you at that moment on that day.

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Research research research – Take your notes from your appointment and research the sort of things your doctor is telling you. Look up the condition they/you think you have. Look up the tests for it. Look up symptoms. Look up whether or not the things the doctor has told you are true. And, most importantly, make sure you’re looking at a reputable source and, ideally, that it has recent information. A lot can happen in the medical world in ten years (hell, my right ankle surgery was done differently last year than my left ankle was in 2009), so keep a keen eye at the website’s information.

Fire them – At the end of the day, you are the one in charge. You are the patient, the one the entire appointment is about. Sometimes these doctors forget that. If you are in the position where you can see a different doctor (at that practice, at a different practice, at a different hospital, in a different city), do. It can be hard to make this decision, but you deserve better. You deserve to see a doctor who listens to you. So fire the doctors who don’t.

What are your tips for dealing with a doctor who doesn’t listen to you?

Like this post? Check out:

How To Become an Advocate for Patients, Building Self-Confidence When Chronically Ill, Caring for Rheumatoid Arthritis Patients,

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1 Comment

  • Reply Lisa

    Thank you for this. I’ve suffered from Fibro for almost 20 years, and I could write a very tragic book about my experiences with doctors and alternative practitioners. I filed an ethics complaint two days ago for a rheumatologist who refused to prescribe ANYTHING, including non opioid migraine medicine. With all the negligence I’ve experienced, I’ve never filed a complaint. But no more. We need to fight for the care we deserve. Another huge problem is the government restrictions on controlled substances and hysteria over the opioid epidemic. I’ve never taken anything stronger than tramadol for pain, have no history of drug abuse, yet I can’t even get a prescription for tramadol. I will see if I can find a patient advocate, although I live in a underpopulated state.
    And I will drag my husband to the next doctor, if I can find one who isn’t practicing Medieval medicine.
    Thanks again.

    August 31, 2019 at 6:30 am
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