Ask a Caregiver

This post was written by a chronic disease survivor with many years under her belt.

Hello all,

I've received a handful of messages requesting that I write up a post on my tips for dealing with doctors.

For those reading this for the first time, I am a 34 female with decades of chronic pain treatment under my belt. I’ve had a lot of success communicating with doctors because I’ve spent quite a few years learning how they make decisions and take in information.

Interacting with doctors can be frustrating and intimidating — but it doesn't have to be. If you are reading this, then you deserve the best possible care that any doctor you see has to offer. You deserve to be believed and treated with respect.

When a doctor doesn't believe a patient, it usually comes down to one of the following reasons:

They don't have enough information to make sense of what's going on (doctors love data because it helps them figure out the right answers).

They are overwhelmed by a patient's emotional state (this applies more in a routine than emergency care setting - routine care doctors are not "battle trained" like emergency care ones).

They feel that the patient is being argumentative.

They feel that the patient is being deceptive or non-compliant in their treatment.

Fortunately, all of these reasons are avoidable. Here is my short guide on interacting with doctors to create a collaborative treatment experience — one in which you feel understood and are well served by your doctor. Please feel free to chime in with your thoughts or other tips that have worked well for you.

1. Get yourself a folder and notepad to bring to your appointment (or an app if you prefer).

Use these to prepare for your appointment. By bringing them along, you will be able to easily share your medical records, notes on potential treatment options, your talking points, and questions for the doctor. More on what materials and notes to include in the following tips.

2. Research what treatment options are available for your conditions (or symptoms if undiagnosed).

It's always helpful to know your options. Using online resources such as Mayo Clinic, WebMD, and Drugs.com can help you to understand the entire spectrum of treatment options that exist. By taking the time to learn about them, you’ll feel better prepared and able to ask more informed questions.

Plus, if you come across a newer treatment that your doctor hasn't considered, you will be able to ask "What are your thoughts on X? Could that be a good direction for my case?"

Take notes on any treatment options that stand out to you, making note of their potential side effects and any drug interactions with your current therapies in case you have questions for your doctor. You can find a free drug interaction checker at Drugs.com, as well as patient reviews on any given medication.

If you are seeing a new doctor for the first time, consider looking them up online to read reviews by their patients. Look for phrases like "did not feel rushed" and "has good bedside manner". If you can, try to avoid doctors who have a significant amount of negative reviews (or if not possible, mentally prepare yourself based on what other patients experienced).

3. If the appointment is with a new doctor, prepare a comprehensive medical history to bring with you.

When it comes to offering treatment options, you generally want your doctor to act quickly. But, before they can do anything, they need to feel confident that they have all the right information.

Start by calling the office or checking the provider’s website to see if you’re able to download the new patient forms in advance. You want to complete them on your own time, not while you’re feeling rushed in a waiting room, prone to forgetting things.

Your doctor sees a ton of patients each day — sometimes 50 or more. You will only have so much time for your appointment, so it is imperative that you make the most of it. That means, you should focus your effort on items that move the appointment forward. Your medical history will be the first item of value that your doctor can use. It paints a picture of who you are as a patient and what you have been through so far.

Focus on delivering the “cliff notes” of your medical history. Prepare the following to bring with you:

Any blood work, imaging, or other test results

A list of your diagnoses, when you received them, and the names of the doctors who made them. A diagnosis is like medical currency — if you have one, then your pain is instantly legitimized in the eyes of the medical community. If you don't yet have one, then your primary focus should be on testing and clinical assessment to get one. Once you have a diagnosis, treatment gets way easier.

Any past surgical records

The names of any other doctors you have seen for this condition and what outcomes resulted

A list of all past medications you have tried to treat your symptoms and why they failed (you'll be more likely to obtain a better prescription treatment if you can communicate everything you've already ruled out and why)

It might sound stupid, but it helps to practice delivering your medical history in a brief and concise manner. By rehearsing it to yourself or someone else, you're likely to feel better prepared and not leave out anything important.

4. Write down your questions and talking points beforehand and bring them with you.

It's much easier to fit in everything you'd like to get across when you plan it out beforehand. You can try taking notes in your notepad on how you plan to describe your pain to your doctor, or use your phone if that's easier.

Make sure to include:

When the pain started

Where the pain is located

What it feels like

How frequently it happens (i.e. is it constant or intermittent?)

What makes it feel worse or better

Most Important: What daily activities are affected by the pain and what impact it's had on your life. Be specific (For example: "I used to be able to work out 4x/week, but now I have a hard time even walking on the treadmill for more than 5 minutes. The throbbing pain in my feet becomes overbearing and my legs turn weak until I can't keep going anymore. Do you have any ideas as to what might be going on here?")

Also very important: What is your goal for your treatment? Are you looking to restore physical activity? Obtain a diagnosis? Try a new treatment because the current one is not working? If your doctor understands what you're looking to achieve, then they can take the right steps to help you.

Just like your medical history, it can help to practice delivering these talking points. Even long appointments can fly by and you'll want to make sure that the doctor gets the most complete picture.

5. Use a lot of "because" statements

This is probably the single most important tip in this post. Remember this if you take away nothing else.

Doctors believe what they can measure and observe. That includes:

Symptoms

Treatment

Medical history

To get a doctor to listen you you, you should ALWAYS present your concerns as "because" statements.

For example, rather than saying: "I'm afraid that the pain is going to cause me to collapse and have a heart attack!"

...you should instead say: "I'm concerned about the potential effect that my sustained pain level might be having on my heart BECAUSE I have a history of cardiac issues and was evaluated last year for arrhythmia."

Notice how in the latter example, a reason is given for the concern. That allows the doctor to connect the dots in a way that makes sense to them. It may help to write out your concerns as "because" statements beforehand to ensure that all of them are listened to and nothing gets brushed aside. Each "because" statement should tie to a symptom, treatment, or medical history.

Here are a few more examples:

"I'm concerned that I might end up having a bad fall because I've been experiencing generalized weakness and muscle spasms." (symptom)

"I'm concerned that amitriptyline may not be the right fit for me because I sometimes take diazepam." (treatment)

"I'm concerned that I might contract an infection in the hospital because I'm diagnosed with an immune deficiency." (medical history)

"I'm concerned about the numbness and weakness I've been feeling because my recent neck MRI showed foraminal stenosis." (medical history)

"I'm concerned about symptoms potentially indicating an autoimmune cause because I have a family history of lupus." (medical history)

When you explain your concerns, try to convey concern without desperation. I know that's much easier said than done, but some doctors will leap to the wrong conclusion if they sense a desperate patient (they may wrongly decide that there is either an addiction or mental health issue, which will cause them to focus on that in their treatment decision). As long as you voice your concerns with "because" statements, any reasonable doctor should hear you out (if they don't, it's a sign to drop them and find a more capable provider).

6. Remember that doctors can't always show the right amount of empathy (but that doesn't necessarily mean they don't care).

Doctors are trained to separate fact from emotion because if they didn’t, they would not be able to do their job.

Imagine yourself in a doctor’s position — you’re swamped with dozens of patients each day, all of whom are suffering immensely. Many of them cry, break down, or lash out at you when they feel that you don’t understand their agony. How will you be able to help all of them, let alone not implode from emotional overload?

That is precisely the position your doctor is in. They deal with heightened emotions from patients all day and it can be overwhelming. When your doctor seems unempathetic to your situation, it’s generally not because they don’t care. Rather, they try to set their personal feelings aside in order to do their job without clouding their clinical judgment.

Now, does this mean that it's cool for a doctor to act like an asshole? Of course not. But consider that if you're struggling a bit emotionally (which is perfectly reasonable) and they fail to console you, it doesn't mean they don't care. Sometimes it just means that they've spent their emotional energy for the day and are all tapped out. We can all relate to that.

So, if you end up breaking down in your appointment, it's ok. Just take a deep breath and allow yourself to push forward when you're ready. Try to avoid yelling at the doctor or escalating things in a way that might make them feel triggered.

(This tip does NOT apply if you are in a state of mental health crisis or engaged in self-harm. In that situation, you should focus immediately on the emotional turmoil that you are experiencing and inform your doctor so that they can help you.)

7. If you disagree with something that your doctor suggests, try asking questions to understand it.

Doctors can become exhausted when they think that a patient is not hearing them. It makes them feel as if the patient does not trust them or want to collaborate. This is absolutely not to suggest that you should just accept everything your doctor says. But if something doesn't seem to make sense, try asking questions before you dismiss it. Asking questions keeps the two-way dialogue open and keeps the discussion collaborative.

Example phrases include:

“Can you help me understand X?"

"How would that work?"

"How does option X compare to option Y?"

"What might the side effects be like?"

"How long does this treatment typically take to start helping?"

When an appointment ends badly, it's usually because either the doctor or the patient is acting closed-minded (sometimes both). If the doctor is acting closed-minded, you have the right to end the appointment and leave. If the doctor thinks you're acting closed-minded, it can make the appointment an upsetting waste of time where nothing gets accomplished.

If you're certain that a doctor's suggestion is wrong, try using a "because" statement to explain why. For example, "Cymbalta might not be a good option for me because I had a bad experience taking Prozac in the past."

Most doctors are open to being proven wrong (if not, that's an obvious red flag). Asking questions allows you to keep the two-way dialogue open so that they hear you out and you learn more about why they are recommending certain treatments.

8. If your doctor is stressing you out, take a moment to breathe and then communicate what you need.

Doctors are trained to operate efficiently, which does not always coincide with a good bedside manner. If you feel like your doctor is rushing or gaslighting you, you have the right to slow things down. Always be polite, but clear and direct.

Example phrases include:

“I’m sorry, but this is a lot of information for me to take in. Can we please take a step back?"

"I think I may not be getting this information across clearly. Can I try to explain it again?"

"I think there may be more to the problem that we haven't discussed. Can I explain?"

If you have a bad experience with a doctor, keep in mind that they don't represent all doctors any more than you represent all patients. There are plenty of other providers out there who can be a better mach. When you feel ready, consider getting another opinion. Not to mention, most doctors love to hear things like, "Thank you for being so helpful. This has been nothing like my last appointment where the doctor did X and Y." It's validating for them to realize that they've done right by someone.

9. Stick to treatment plans when possible.

If you commit to trying a treatment, try to keep with it unless you run into issues.

If you do run into issues, call your doctor's office and tell them what happened so that they can help — don't suffer in silence or rely solely on the internet for advice. It's your doctor's job to help you navigate your treatment plan — make them do it.

In summary,

We all know that the medical system sucks and things aren't designed in an ideal way to help us. But that does not make it hopeless... far from it. There is SO much within your control, starting with everything on this list. The more you can control, the more you can drive your own outcomes. Don't rely on doctors to take the initiative in moving things forward because they won't. Should it be that way? Hell, no. But knowledge, as they say, is power. Once you know how to navigate the system, you can work it to your advantage. Because ultimately, getting the treatment you need is all that really matters.

This article was a contribution of CopyUnicorn on r/ChronicPain

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