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Key points
- Accurate diagnosis can be challenging even for highly trained physicians.
- Doctors have communication tools they can use to improve understanding and diagnosis of their patients.
- Patients can help doctors diagnose through storytelling and keeping a record of symptoms.
The doctor-patient relationship is a partnership, with two essential goals: to diagnose, and to treat. For many chronic diseases, that is easier said than done. Thankfully, there are communication tools we can use to help our doctors figure out what is going on and treat it effectively. In this post, we are going to talk about tips for helping your medical team get you to an accurate diagnosis.
There are several situations that make getting to an accurate diagnosis harder:
- If there if no disease biomarker. In other words, if symptoms are the only way you can tell the disease is happening.
- If the symptoms are self-reported. This is why diseases like migraine, fibromyalgia, and myalgic encephalomyelitis/chronic fatigue syndrome are so often misdiagnosed. For example, in the American Migraine Prevalence and Prevention Study, 40% of people with migraine who talk to doctors about their headache report they did not receive a migraine diagnosis.
- If the symptoms could indicate something more severe. This one can be counterintuitive. For example, headache can be a symptom of a lot of scary, dangerous things like stroke or cancer. But sometimes, once doctors have ruled out the really dangerous things, the patient is left with the symptoms but without a clear diagnosis and plan.
There's often a disconnect in the room between what patients are reporting, and what providers get out of those conversations. For example, in the American Migraine Communication Study, patients and providers had a routine clinical encounter. Afterward, researchers asked both the patients and providers how many days in the past month patients had migraine attacks, and the extent to which migraine impaired their functioning. For both of these indices, providers were misaligned with their patients more than half of the time (55% for frequency and 51% for impairment). That is a lot. Imagine that half the time you asked your spouse how their day was, you got it wrong. That would be distressing at best and harmful to your relationship at worst.
A lot of research has focused on how providers can change their communication to better understand their patients. For example, the American Migraine Communication Study studied a communication tool for providers where they asked open-ended questions, and after the patient had told them the answer, they repeated it back to make sure they understood. This improved the agreement between patients and providers. Not all the way! But it was a start.
It is good that most of this research focuses on providers. After all, they are not the ones in pain with bewildering symptoms trying to figure out what is going on. But there are some ways that patients can use this information to try to improve their own doctor's visits, regardless of whether their provider has read up on the latest in the patient-provider communication literature.
5 Tips for Patients
1. Tell your story: At the end of the day, when you enter a doctor's office, your job is to tell your story. So prepare like a storyteller. In the days before your doctor's visit, imagine you're preparing to tell a story on The Moth or another storytelling venue. Take notes, and use that framework to tell your story of your disease. There are basically two ways to tell your story. First, start at the beginning, and move forward through time. Depending on how long you've been having symptoms, this can take a long time. But by going through your story play-by-play, you may find patterns in the symptoms that you hadn't seen before. This is also a good way to get down on paper what treatments have, and have not, helped each of your symptoms. That is an important piece for doctors because it helps them understand the underlying reasons for your symptoms.
Second, you can focus on the current symptoms. What is everything that is bothering you right now? What interferes with your ability to function normally the most? To do this, it can be helpful to keep a record over a time frame that makes sense for your symptoms, like a day, a month, or three months.
2. Keep a record: For headache disorders, it is common for people to use "headache diaries" or "logs" to record their headache symptoms prior to their first visit. Note that most of the logs available online are made for migraine, so if you don't have migraine, it may not be asking all the relevant questions. The same is true for pain logs, and logs for other conditions. If you have symptoms and you're not sure what is going on, keep very close track for a month. Try to understand when the symptoms are happening, and if there are any patterns you can see. Note the quality of the symptoms and their intensity. Pay attention to other things happening beyond just your most bothersome symptom. For example, if you're in pain, you may not necessarily think that the tinnitus (ringing in your ears), dizziness, or runny nose that you get at the same time are all that problematic. But these types of symptoms can help providers nail down exactly what is happening with you, which can inform treatment.
3. Standardize it: When doctors give you standardized assessments, that is a good thing. This makes sure they do not forget to ask questions that may not seem important in the moment, but that could be crucial for diagnosing your disease. So before your first visit, ask about standardized assessments. Are there any measures that you could complete that would be useful in helping the doctor understand what is happening to you?
4. Ask, then tell: When your doctor asks you a question that you didn't expect, ask what they are trying to understand before you begin your explanation. That way, you're both on the same page and it lessens the likelihood of misunderstanding. For example, doctors often ask, "How severe was the pain?" to patients with migraine. That question doesn't make a lot of sense, because the pain of migraine attacks often start off less intense, and worsen as they go on. So you may have a migraine attack that started at a 2/10, worsened to a 4/10 at which point you took medication, and got to a 6/10 before the medication started to work. So you may answer "4" because that was the average. But if the doctor thinks your "4" is the maximum pain intensity, they have misunderstood how intense your migraine pain is. Similarly, if you answer "6," they may think that a 6 is the most painful your migraine attacks get, not realizing that pain of 6 occurred during a treated attack. If you had not treated the migraine attack, the pain intensity could have gotten much worse. So when a doctor asks a question, try to clarify what they are looking for first, then give them an explanation that fully encompasses the question so that they do not misunderstand the symptoms you are having.
5. Keep your goal in mind: You have multiple goals you want to get out of an encounter with a provider. You want to receive an accurate diagnosis. You want to be heard and understood. But most of all, you want to feel better. You came into the visit with symptoms, and you want to find a treatment that will reduce those symptoms and help you improve your functioning in daily life. So as you're preparing for your encounter with your provider, keep in mind your major goals and reiterate them frequently. By continually highlighting how your symptoms are impacting your ability to live your life normally, you will be refocusing the doctor's attention on what matters the most to you.
