Talk With Your Doctor

Talking to your doctor, especially about your lupus symptoms, is a special kind of communication. With some preparation and a little practice, you can make discussions with your healthcare team the best they can be.

I worry that there’s not enough time to get everything covered at my appointments. But I also know that this time is valuable—so I’m going to use it right!

What’s in your way?

Getting the best possible care is easier when you can communicate well with your medical team. But sometimes that’s harder than it seems. You may have barriers you need to break through when talking to your rheumatologist or other team members.

Fear or intimidation

Your doctor’s education and expertise may make you nervous about asking questions or making suggestions. But only you know how you’re feeling. Be confident that you’re the expert about you!
Lack of common vocabulary

You may not understand all the medical terms your doctor is using. Use this site and other resources to learn as much as you can about lupus. At your visit, be sure to ask your healthcare team to explain anything you’re not clear about. You might even want to take along our Lupus Dictionary to help.
Embarrassment

It can be tough to admit when you haven’t followed your doctor’s instructions. It’s important to be honest and candid about everything—including your medication usage, exercise, lupus symptoms, and habits. There's likely nothing you can say that they haven’t heard before, and the only way your doctor can truly help is if they have the full picture.
Lack of time with doctor

You may not think there’s enough time in your appointment to talk through your concerns. Appointments may last only 15 minutes. But, when you’re prepared with a list of symptoms, concerns, and questions, you may be surprised at how much you can get done.

View Dr. Jackie’s Transcript

ON-SCREEN TEXT:

Us in Lupus

We’re better together.

ON-SCREEN TEXT:

Dr. Jacqueline Walters

Board-Certified OB/GYN

DR. JACQUELINE WALTERS:

It’s important that you share with your OB/GYN that you have lupus, and all of the symptoms that you’re experiencing, because there are certain medications in OB/GYN that we don’t give to a lady who has lupus.

It is important as a woman that you share with me: Are your periods normal? Are you in pain? Is there something growing in some part of your body that you may be slightly embarrassed to share with us?

Because in itself, lupus is complicated, frustrating, and debilitating.

ON-SCREEN TEXT:

“LUPUS IS COMPLICATED, FRUSTRATING, AND DEBILITATING.”

DR. JACQUELINE WALTERS:

But if we don’t have all of your symptoms, if you’re not sharing your emotions, if you’re sad, if you’re depressed, we want to know that.

Because it is my job to make sure you’re healthy, but I sure want to make sure that you’re happy.

ON-SCREEN TEXT:

“It is my job to make sure you’re healthy, but I sure want to make sure that you’re happy.”

DR. JACQUELINE WALTERS:

It is important that we have somebody as your support system who has a relationship with your doctors.

You want your best care? Bring your family.

ON-SCREEN TEXT:

“YOU WANT YOUR BEST CARE? BRING YOUR FAMILY.”

DR. JACQUELINE WALTERS:

They can ask those questions that you’ve been asking them and forgetting to ask me. They can take notes for you while we’re talking so that you’re not distracted by trying to take notes.

A family support system is as vitally important as your doctor.

ON-SCREEN TEXT:

“A family support system is as vitally important as your doctor.”

DR. JACQUELINE WALTERS:

So make sure you include your family.

ON-SCREEN TEXT:

Us in Lupus

We’re better together.

Be open with your doctor. It can make a difference!

The more you tell your doctor about what’s happening with your body, the better they may be able to help you. It’s normal to feel embarrassed or unsure how to explain something, but your doctor understands that! Speak up, ask questions, and get the care you deserve.

Take a buddy

Invite a friend or family member to join you at your next appointment. They can help you with important tasks during your appointment. For example, they can take notes so you can be free to talk with your doctor.

Having someone you trust by your side may help ease any nervousness you may be feeling. Plus, they can help you remember important questions or offer another point of view about how lupus is affecting your life.

Want to be extra prepared? Ask your buddy to practice with you. Role-play your conversation with your doctor, especially if you have something sensitive to bring up. Work on being direct and to the point.

Set realistic expectations

What are your goals for your relationship with each of your doctors? Start by looking at your wants versus your needs. When working with a doctor, all you really need is someone who provides you with good care.

But you may want a friendly doctor, one who asks about your family and your job. Others may want a doctor who brings them the latest scientific research. Either can work for a healthy doctor-patient relationship—as can anything in between!

Take a look at your own expectations. You may want to work to find a healthcare provider who aligns with them. Or you may simply accept that your current doctor meets your needs, even if all your wants don’t match.

Try the PART method

To better communicate with your doctor, you may want to think about the PART method:

Prepare

for your visit ahead of time. Track your symptoms and triggers, record how lupus is affecting your life, and make a list of questions.

Ask questions

Ask any questions you brought with you, along with any others that may come up during your visit. Before you leave, be sure you understand new diagnoses, tests, treatments, and other instructions.

Repeat

To help you with your understanding, replay the key points of your visit back to your doctor.

Take action

It’s very likely that your doctor has instructions and other next steps for you. Make sure you’re clear about them—and then follow through!

Remember that signs and symptomssigns and symptoms: signs of lupus can be seen by others, such as a rash or an abnormal lab result. Symptoms of lupus can be felt by you, but can’t be seen by others, such as headache or fatigue. mean that your lupus is active. Active disease may be causing long-term damage to your organs. Anytime you’re feeling something new (or a flareflare: a sudden increase in disease activity. of something you’ve felt before), take note of it. Even if you aren’t sure it’s related to your lupus, write it down and talk about it with your doctor. Lupus can affect your whole body in ways you may not even recognize.

Remember, feedback is important.

Even the most seasoned pro appreciates hearing a kind word. When things go well, let your medical team know.

Or, if you’re unhappy with any part of your care, let them know that, too. Politely share any feedback, focusing on the facts, such as wait times, length of time to get an appointment, etc.

Bottom line

Remember that both you and your medical team want the same thing: your best health. Knowing that, you can be honest and candid in every conversation, creating a true partnership along the way.

Looking for ways to better prepare for your appointments?

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