Doctor and patient communication should be a two-way street, not one.

While your doctor has medical expertise and training in how to recognize and treat medical conditions, you are the expert on your body and your needs.

As a patient, it’s your responsibility to gather good information about yourself and your history and symptoms, and it is your doctor’s responsibility to interpret the information you share into hypotheses that are tested by data gathering(tests and examinations).

You can only be properly diagnosed and treated if both you and your doctor carry out your responsibilities well. The first step is to know when to see a doctor.

Knowing what to ask and tell the doctor

It’s also important to know what you need to tell the doctor and if there’s anything that you don’t need to mention. Sometimes this feels pretty simple and straightforward, but other times seemingly unrelated things actually are connected, and sometimes what seems like one problem actually has multiple causes. The better you can describe what you are managing, in ways your doctor can understand, the more likely it is that your doctor will be able to recognize your symptoms and either help you identify your condition, or know what sort of specialist to refer you to.

You do not need to know fully medical terms, or describe everything neutrally, but there are terms that can help you explain your symptoms clearly.

For example, when Al was injured in a car accident, his two biggest issues were emotional self-control and remembering things.

‘my head hurts’ and ‘the sharp pain is in my right temple’ are very different descriptors and the second can be much more helpful.

Before his appointments, we would write down a list of issues that he or I had noticed since the last appointment, and any improvements either of us had recognized. I went over this with him the day before, and sometimes took notes for myself about examples of things he forgot or emotional explosion points.

He and I would discuss what to talk about before the appointment, and I’d bring the list of issues with me. I went with him to all of these appointments so that I’d make sure everything that needed to was said and that I knew what the next steps were.

He could describe the headache he had from the brain injury(like the moment you start having brain freeze from eating ice cream or other frozen treats), how it felt, and how long it lasted(he had it all the time, but some things made it stronger and other times he barely noticed it.)

By describing how it felt and where the pain was located, he helped the neurologist recognize that the headache was a result of the brain injury, which helped the neurologist consider treatment options(mostly migraine medications).

It’s also important to give as many details as you can, as some things you don’t expect are related.

Al’s osteoporosis(very weak bones) was actually caused by his inability to absorb vitamin B-12. It was only through blood testing and an endoscopy that the doctors involved were able to put the pieces together and recognize that his bones were weak due to the lack of B-12 in his system and that the B-12 issue was about him being unable to absorb the B-12, rather than him not having enough B-12 in what he ate.

Communicating well with your doctor also includes any work you can do to put together cause and effect.

For example, I know that most of my Functional Neurological Disorder(FND) symptoms worsened when I was under stress or felt extremely burdened or anxious.

My neurologist was able to use that to help confirm my conversion/FND diagnosis, when combined with a lack of confirmatory test results for other possible conditions and the difference between my movement symptoms and the symptoms of more commonly recognized movement disorders.

Share the patterns you notice, and ask about patterns to look for, and you can be a more active partner in your diagnosis and treatment.

Being able to question the doctor’s ideas/suggestions/diagnosis

You also aren’t well-served by meekly accepting whatever your doctor tells you. If it sounds like your doctor misunderstood something you told them, you need to ask for clarification.

If your doctor suggests a treatment that feels wrong to you – either too mild or too extreme, you have every right to ask how they reached their conclusion, get a second opinion, or ask if there are alternative treatment options.

If you aren’t sure about any aspect of your diagnosis or treatment, you need to ask for clarification or for additional options!

When I was investigating hysterectomies in response to some troublesome symptoms I had, I read about the insanely large percentage of women who got unnecessary hysterectomies early in their lives, losing their fertility as a result of seeing doctors who suggested them even though that wasn’t the only(or sometimes best) treatment for their particular issues.

The idea of a woman losing her ability to have children without getting a second opinion feels insane to me, but apparently not only has it happened, but it’s happened often. Many of these women might not have had to have major surgery with life-altering consequences if they had been willing to question their doctor’s assumptions or statements.

Often when a doctor mentions a treatment, it’s the most common treatment or the most common option. Sometimes this isn’t the best option.

You always have the right to question your doctor’s opinion, ask for additional options, or look into a more radical or conservative treatment option.

Your doctor is responsible for giving you your options and your odds, but they don’t always think of all of the angles at once, so being your own advocate is vital, especially if your doctor is suggesting something with long-term consequences or that puts your life at risk.

Make sure that you understand what your doctor is saying

There are some words that have a very precise meaning for doctors, while we use them more casually. These may define lengths of time, levels of severity, or other details on our symptoms.

It’s important, therefore, to make sure that when you say terms like ‘occasionally’ or ‘frequently’ or ‘severe’ that you and your doctor both understand what those terms mean for you.

For example, your ‘severe’ headache may be ‘so bad that you’re in a dark room with an ice pack on your head’, while another person’s ‘severe’ headache may be ‘I started vomiting’ or ‘I had to stop watching TV’.

Also, many doctors have medical vocabulary that you might not be completely familiar with. If you don’t fully understand what they say, or what they need you to do, you may need to ask them to explain further. While I understand that CBC is related to blood testing, I’m not going to understand all the acronyms on the blood panel, so I’d need my doctor to go over that information in more detail with me.

If you don’t know what an NSID(non-steroidal anti-inflammatory drug) is, how can you pick it up(or avoid it) when your doctor instructs you to?

Some treatments call for dietary adjustments or for trying(or avoiding) certain classes of medications. You need to understand what they’re suggesting – and why – in order to follow(or question) their instructions. So if you don’t fully understand something your doctor tells you – do everybody a favor and ask them to explain it ‘in plain English’ or to elaborate on what you need to do.

Studies have shown that low health literacy(understanding of written instructions) leads to poor results – and while there hasn’t been research directly on oral communication, I’m sure the findings would be similar.

Misunderstanding your doctor can be deadly, so you need to make sure that you and your doctor are communicating clearly about your treatment, diagnosis process, and next steps.

Developing a treatment plan

If you have a diagnosis you are confident in, you and your doctor should have created a treatment plan.

A good treatment plan includes when and why you have appointments and testing with your doctor(s), and what you need to do at home to improve your quality of life.

Conclusion

It’s important to be able to communicate well with your doctor.

You need to work on describing your symptoms, understanding how any condition you have works, and listening to your own body so you are more in tune with your own health. 

Before you go to your appointment, have a list of symptoms you are experiencing and be able to describe things in as detailed a way as possible. ‘My head hurts’ is pretty vague, but ‘I feel like I have brain freeze from eating too much ice cream’ will get your doctor on the same page as you as far as the location and nature of your pain.  

You also need to make sure that you can stand up to your doctor and question their recommendations.  Your doctor can’t read your mind, and for the most part there are ‘standard’ treatments that help the average person. 

You aren’t the average person. You have your own set of needs and symptoms, and deserve to be treated accordingly.

You won’t know unless you ask, so make sure that if what the doctor suggests sounds wrong to you, you can ask the doctor to explain their logic, give a more detailed explanation of why the treatment must be done that way, or share additional treatment options with you. 

Being able to question their suggestions and request a more detailed explanation is an essential practice for you to be able to work with your doctor.

It’s also important to have a treatment plan, which is a combination of what doctors(including specialists) you need to see, why you need to see them, and how often you need to check-in.

Your treatment plan also includes the things that you need to focus on at home to keep yourself healthy. That may include a dietary plan, encouragement to exercise more, medications to take, or other habits you need to develop or strengthen.

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6 Comments

  1. O’ yes, treatment plans are so important. Many times I’ve seen and noticed others experiencing this too that they’re given a diagnosis, a prescription of meds but there is no conversation about what those meds are for, what should you feel because of them, what side-effects should you watch out for or even what the plan is in general. Most people choose not to ask because they’re not sure how to, or they think they’re taking away the doctor’s precious time. It’s in these moments, I feel it’s the doctor’s responsibility to ease anxieties and explain what they’re prescribing and the plans ahead – these explanations should be a default. A doctor should not wait for a patient to ask.

    Really good post because it builds awareness of such basic things which people may not realise they have the control to do.

    1. Shruti – yes, exactly! It’s so important to understand the intent behind the treatment , the purpose of your medications, and if there are other specialists to see.

      Much of my FND treatment is about my state of mind combined with treating symptoms, but my partner Al needs regular blood tests and scans to track his B-12 levels, his bone density, and moniter other indicators of possible imbalances or side effects. Understanding that was essential for his treatment and long-term health.

      Thank you for your kind words!

  2. A brilliant spot on post as always Alison! I was nodding along in fierce agreement to so many of the points here. Things i had to learn the hard way with long term consequences and hope others don’t have to as well.

  3. Thank you Sheryl!
    That’s why I do this, to have others learn from my mistakes and experiences, and not make the same ones I did!
    It’s so important to have a good understanding with your doctor(s), and to ensure that your treatment is the best one for you!

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