Doctor I Don’t Understand! Pt 1

A Guide to Asking Your Doctor Questions to Understand Your Diagnosis

Part 1

by Dr Makini McGuire-Brown

This is article 2 of our Patient Tips series! In article 1 we learnt about the devastating effects of Diagnosis Denial! In this episode we pick back up on one of the suggested solutions to diagnosis denial, that of asking questions! The number one way to help yourself begin to accept your diagnosis is to understand it. Understanding your illness empowers you to make decisions about your health, helps with medication/treatment compliance and generally better outcomes. Motivation to continue going even after years of illness often comes from a deep understanding of the natural course of the illness; a preparedness for what is generally expected and a plan for how to deal with it.

The problem of course is how to get to this place of understanding. You may want to know more about your illness but you don’t know what you don’t know! So what questions should you ask? How would you know if you are asking the right questions to get the right information? This guide is designed to help you with that! Now each illness will have its own unique questions and answers and so this list can never be exhaustive! But it’s a start!

Here are 10 questions to ask your doctor to gain a preliminary understanding of your diagnosis:

1. What is the name of my diagnosis?
2. What made you come to this diagnosis?
3. How will it affect my body?
4. How will it affect my mind?
5. How will is affect my job?
6. How will it affect my social circumstances (family, friends, relationships, hobbies)
7. What is the natural course of the illness?
8. How can it be treated?
9. How does treatment affect the course of the illness?
10. What can I do to help myself?

Good explanations to each of these questions can make you feel a lot more confident about your ability to cope with and manage your illness. And like we said in episode one if you don’t trust your healthcare professional and this is causing diagnosis denial then please take these ten questions to another physician.

So let’s explore the importance of each:

1. What is the name of my diagnosis?

If you say you know a person, you likely know his/her name. A name is a central part of one’s identity. The same goes for an illness. You can’t say that you know the illness that you have unless you know its name. Just as a name is an important identifying feature in a human so it is in a disease. In medicine, many disease names tell you exactly the characteristics of the illness. Therefore starting off with an explanation of the name of the illness is very important. It also has the bonus feature of allowing you to go anywhere in the world and be able to help the health professionals attending to you with pertinent health preserving information.

If we think of an illness like arthritis as an example, starting with the name sparks the entire explanation. The word arthritis literally means joint (arth) inflammation (itis). From here your doctor can easily explain to you what a joint is, what the medical explanation of inflammation is and you will understand why in arthritis joints get swollen, red, warm and painful.

Additionally, there are many types of arthritis for example osteoarthritis versus rheumatoid arthritis. Understanding the names gives you an opportunity to hear the explanation between the two because they have very different ways that they each can progress. Now an important point to note here is the importance of not becoming your own Google doctor. The word osteo means bone and rheumatoid diseases have to do with bones, joints, muscles. But these added names alone are not enough to help you understand the very important differences between the two conditions. So while names are a start, one must please allow trained professionals to give the explanations.

Starting with names will lead to an entire explanation of the illness and right into question number two.

2. What made you come to this diagnosis?

Every doctor’s primary job is to diagnose. It is very hard to treat properly without a diagnosis. Although this situation does arise, it remains non-ideal, and exhausting all attempts to achieve a diagnosis is still best practice. Diagnoses can be made by using historical facts as told by the patient, physical examination findings, laboratory tests such as blood or urine, radiographic tests such as x-rays or ultrasounds and other special tests. A diagnosis can be made with 1, several or all of these. It is important to note that not every diagnosis needs to be made with a blood test or X-ray! Some diagnosis are made purely on history and physical examination, some diagnoses have very specific “diagnostic tests” that will tell you “for sure” while others don’t and can only give you a “very likely” response to whether you have a certain disease. Such is the nature of medicine and science.

However, by asking your doctor how the diagnosis was arrived at, you get more details, and are able to connect the symptoms that you were experiencing with the explanation of the disease and the route to diagnosis. It also helps you understand why other diagnoses were excluded. For example, you could present with a lump in your breast. The list of possibilities for a lump in your breast are enough to fill an entire episode just by listing them! Your doctor can tell you that you have been diagnosed with a breast abscess. You then think, “But what about cancer?”, so then you ask “How did you come to that diagnosis?”

To come to such a diagnosis a doctor may take a few steps. History- Was the lump painful? When did it appear? Is the size increasing? Does it feel warm?, Are you breastfeeding? Examination – Breast and Lump exam as well as lymph node exam and general exam. Tests- Ultrasound of the breast and lump, blood tests. This is only an example, more or less than this could also be done. The point is however that if you are a breastfeeding mother that came in with a red, painful, squishy, warm lump, showed an increase in white blood cells in your blood, and had an ultrasound showing a fluid collection, a breast abscess would be number one on the list. Your doctor can go through this with you and compare and contrast these symptoms and tests with those that are more indicative of cancer. There are also follow up tests that can be done once treatment is instituted for the diagnosis that can actually further help confirm that the diagnosis is correct.

The point is that while there are exceptions to every rule and there is always a margin of error, being guided through the logical path to a diagnosis is extremely helpful in building your confidence in understanding your illness.

This is part 1 of our guide to know what questions to ask to understand your illness. I’ll let you soak this in and pick it back up with questions 3-6 next week when we will focus on the direct effect of illnesses on various parts of you and your life. Feel free to send in comments or questions!

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