Make the most of your conversations
Welcome to Speaking of Lupus!Welcome back to Speaking of Lupus!
Thank you for joining us and choosing to take an important step in managing your lupus. This program was designed to help you boost your skills and confidence in communicating with the important people in your
life—including your healthcare team.
We invite you to explore and work through the activities in order, and at your own pace, as we guide you every step of the way. We hope you discover that you have the power to be a better communicator and ultimately, the power to face your lupus.
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MEET DR. BENNETT VIDEO TRANSCRIPT:
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Us in Lupus
We’re better together.
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Speaking of Lupus
Introduction
Meet Dr. Betsy Bennett
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Dr. Betsy Bennett
Clinical Health Psychologist
Dr. Betsy Bennett was compensated by GSK for participation.
DR. BETSY BENNETT
Hi, there. I'm Dr. Betsy Bennett and I'm a clinical health psychologist. That just means that I'm a psychologist who specializes in helping people with the emotional and social aspects of health.
Since getting my Ph.D. from Vanderbilt University, I've worked in many different disease states—everything from cancer to birth defects. And, I've worked for many years developing tools for lupus patients—just like you!
I know that living with lupus can be particularly challenging. But don't be discouraged.
There are so many things you can learn to make life with lupus more manageable.
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“There are so many things you can learn to make life with lupus more manageable.”
Us in Lupus
DR. BETSY BENNETT
And one of those is learning to communicate more effectively with the people around you.
Join me for Speaking of Lupus as we learn ways to make communicating about lupus with friends, loved ones—and your doctor and healthcare team—just a bit easier.
Across four chapters, we will focus on improving your self-confidence, how to communicate more clearly, and how to apply the skills you’re learning.
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4 CHAPTERS
DR. BETSY BENNETT
Each chapter builds on the one before it and consists of a video and activities to go along. So, as you begin each chapter, be sure to watch the video first before you start on the activities.
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UsinLupus.com/Speaking-of-Lupus
DR. BETSY BENNETT
And, of course, before we really get started, let’s take a moment to download the eight activity PDFs from your Speaking of Lupus web page. These are just the activities that are going to help you build your skills. Using the files, super easy! You can:
• Download them to your computer or smart phone and complete them online.
• Or you can print them out at home, at a friend’s house, at an office-supply store, or even the library. Then, you complete those by hand.
Whatever method you choose, completely fine. Just make sure that your activity PDFs are available and ready to go before moving on. And it's also a good idea to save these to a safe place. Throughout the program, you will be completing each activity in order. You'll also want to refer back to them along the way.
Okay, great! Now that your activities are handy, you are ready to watch the first video, “Chapter 1.”
I'm so glad you're here, and I can't wait to get started. I’ll see you soon!
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Us in Lupus
We’re better together.
Trademarks are owned by or licensed to the GSK group of companies.
©2021 GSK or licensor.
LPUVID210001 June 2021
Produced in USA.
Tip
Before you get started, download and save each chapter’s activities. We’ve made it easy for you to download all activity PDFs at once.
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CHAPTER 1 VIDEO TRANSCRIPT:
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Us in Lupus
We’re better together.
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Speaking of Lupus
Chapter 1
Appreciation & Confidence
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Dr. Betsy Bennett
Clinical Health Psychologist
Dr. Betsy Bennett was compensated by GSK for participation.
DR. BETSY BENNETT
Hi, there! And welcome to Speaking of Lupus! I’m your guide, Dr. Betsy Bennett, and I am so glad you’re here!
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Effective Communication Starts Here
DR. BETSY BENNETT
Are you hoping to find more effective, productive ways to talk about your lupus? If so, you’ve come to the right place.
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Lupus can present some unique communication challenges
DR. BETSY BENNETT
Lupus can present some unique communication challenges, so we designed Speaking of Lupus to help you build the skills you need to communicate clearly and confidently about your lupus with your family, friends, doctor, and healthcare team.
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Maybe you’re here because:
• You’d like help talking to others about lupus
• You’re realizing how hard it can be to help others understand what lupus is and how it affects you
• You’re not getting the most out of your doctor appointments and you want ways to improve the interaction
DR. BETSY BENNETT
So, let’s think about what brought you here. Maybe you’re here because:
• You’d like help talking to others about lupus
• Maybe you’re realizing how hard it can be to help others understand what lupus is and how it affects you
• Maybe you’re not getting the most out of your doctor appointments; maybe you find it difficult to describe to your doctor how lupus impacts your life, and you want ways to improve that interaction
Together, we can work to build and sharpen the communication skills that may help you with one—or even all—of these things.
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With Speaking of Lupus, we hope you’ll learn:
• To more fully appreciate yourself
• To feel more in control
• To communicate in some new ways
DR. BETSY BENNETT
With Speaking of Lupus, we hope you’ll learn:
• To more fully appreciate yourself
• To feel more in control
• And to communicate in some new ways
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Did You Know?
DR. BETSY BENNETT
So, let’s talk for a minute about how lupus may affect you.
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“Lupus may make you more likely to feel depressed, anxious, or even inadequate.”
Us in Lupus
DR. BETSY BENNETT
Lupus may make you more likely to feel:
• Depressed
• Anxious
• Or even inadequate
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None of the time
Some of the time
All of the time
DR. BETSY BENNETT
And you might feel this way:
• None of the time
• Some of the time
• Or all of the time
Feeling depressed, anxious, or just not good enough is so tiring! Many people with lupus feel physically and emotionally worn out. Plus, they often lack the energy and know-how to really manage it.
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Many people with lupus feel physically and emotionally worn out.
DR. BETSY BENNETT
So, what can you do?
There’s really good news! There are ways to move forward that you can learn, starting today!
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Chapter 1 Activities
DR. BETSY BENNETT
With the help of Speaking of Lupus, you’ll work on simple activities that will show you new ways to look at yourself, new ways to look at your lupus, and—our main goal—new ways to communicate with others.
Starting with two simple activities, you can learn to more fully appreciate yourself and how to feel more in control.
So, when you have five minutes to spare, try the activity called “Start with You.”
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Chapter 1 | Activity 1
Start With YOU
DR. BETSY BENNETT
Then, practice it a few more times in the days ahead. When you’re ready, try the activity called “You’re in Control.”
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Chapter 1 | Activity 2
You’re in Control
DR. BETSY BENNETT
And practice that a few times. Then, come back here to your Speaking of Lupus web page and watch Chapter 2, where we’ll talk about even more tips and ideas for better communication.
Don’t worry if your progress feels slow; that’s totally fine! Just keep practicing and remember that even small steps forward can help you get where you want to go.
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“Remember that even small steps forward can help you get where you want to go.”
DR. BETSY BENNETT
So . . . let’s get started! When you’re ready, begin work on Start with You. And I’ll see you back here soon. Take care.
ON-SCREEN TEXT:
Us in Lupus
We’re better together.
Trademarks are owned by or licensed to the GSK group of companies.
©2021 GSK or licensor.
LPUVID210002 June 2021
Produced in USA.
Chapter 1:
Appreciation & Confidence
Starting with two simple activities, learn how to more fully appreciate yourself and feel more in control. Find new ways to look at yourself, your lupus, and—our main goal—new ways to communicate.
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CHAPTER 2 VIDEO TRANSCRIPT:
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Us in Lupus
We’re better together.
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Speaking of Lupus
Chapter 2
Overcoming Challenges
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Dr. Betsy Bennett
Clinical Health Psychologist
Dr. Betsy Bennett was compensated by GSK for participation.
DR. BETSY BENNETT
Hi, there. Welcome back! We hope you enjoyed working through the activities in Speaking of Lupus Chapter 1.
Improving your skills, learning some new techniques, and feeling more in control definitely takes practice. But a little of your time can make a huge difference in how well you communicate and share with the important people in your life.
It’s perfectly okay if your progress feels slow, because even the tiniest of steps will get you where you want to go.
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“Keep trying and just be sure to celebrate all of your successes, the big ones and the small ones, all along the way!”
Us in Lupus
DR. BETSY BENNETT
Keep trying and just be sure to celebrate all of your successes—the big ones and the small ones—all along the way!
If this is your first time watching our Chapter 2 video, keep watching for a brief introduction on what’s ahead.
If it isn’t your first time watching, you can jump ahead by clicking on one of these buttons.
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Select a button on the side to jump ahead or wait a few seconds to continue watching Chapter 2 in order.
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What’s Ahead in Chapter 2
DR. BETSY BENNETT
So, let’s take a minute to talk about what’s ahead in Chapter 2.
Did you know that there are three main communication challenges that lupus patients face?
In Speaking of Lupus Chapter 2, we’re going to explore each of these. And then, we’re going to help you develop and rehearse some phrases to use when you find yourself in a sticky situation!
Plus, we’ll help you distinguish between your wants and your needs.
Clearly understanding the difference between them can help you decide how to communicate them more clearly.
So, Chapter 2 actually includes two activities that will help you build your communication skills. But remember, you don’t have to complete the activities all at once!
Just read the information, try the activities, and practice your skills at your own pace—over a few days or even over the next week.
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These are lifelong skills that you’re building. You don’t need to be in a hurry.
DR. BETSY BENNETT
After all, these are lifelong skills that you’re building. You don’t need to be in a hurry. Take all the time you need to work toward your goals.
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Communicating May Be Tough
DR. BETSY BENNETT
Are you ready to keep learning? Awesome! Before we start the activities, let’s learn a few basics about communication.
So, let’s start with this. Why is communication sometimes hard for people living with lupus?
Turns out there are three reasons:
One is that lupus symptoms can be unpredictable, ever-changing, and just confusing.
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1) Lupus symptoms can be unpredictable, ever-changing, and confusing.
DR. BETSY BENNETT
Think about it: If you’re not sure what your lupus is doing to you day to day, how can you expect yourself to explain it to other people?
The second reason is that lupus symptoms are often invisible to others.
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2) Lupus symptoms are often invisible to others. When people can’t “see” or “hear” your illness, it’s hard to explain exactly what’s wrong to them.
DR. BETSY BENNETT
When people can’t “see” or “hear” your illness, it’s hard to explain exactly what’s wrong to them.
And then the third is that lupus can cause varying amounts of memory loss or difficult concentrating—making people feel a bit slowed down and forgetful.
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3) Lupus can cause varying amounts of memory loss or difficulty concentrating—making people feel a bit slowed down and forgetful.
DR. BETSY BENNETT
All of these challenges can make it hard to come up with just the right thing to say at a given moment.
And with these challenges, is there anything you can do? Absolutely! And even better, we’re going to learn to overcome these three challenges in three steps.
First, you’re going to learn ways to address all three of the lupus challenges: unpredictability, invisibility, and memory loss.
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Unpredictability Invisibility Memory loss
DR. BETSY BENNETT
Second, you’re going to have empathy for yourself every step of the way. You do not have to be perfect!
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Empathy
The action of understanding, being aware of, and being sensitive to the feelings and thoughts of another.
DR. BETSY BENNETT
And finally, you’ll learn to craft an easy-to-deliver message for each type of situation. Then, it’s just practicing.
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Tackling the Challenges
DR. BETSY BENNETT
Let’s start to address and try to overcome the three lupus challenges with some dos and don’ts. Challenge #1 is “Unpredictability.” Let’s talk about what you should do.
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Unpredictability
Due to lupus symptoms that can be ever-changing and confusing.
DR. BETSY BENNETT
DO explain that lupus is unpredictable BY DEFINITION. We'll give you examples of how to
do this in the activities you'll be working through.
DR. BETSY BENNETT
DO show empathy for your listener. You know how frustrating it is . . . you’re living it! Let your listener know that you understand, but you can’t control the ever-changing effects of lupus.
DO rehearse responses that you can say quickly and easily to explain the ever-changing effects of lupus. We’ll work on these in the activities, too.
DON’T apologize for or feel bad about what you can’t control.
And DON’T interpret others’ confusion as disapproval or judgment.
Also, DON’T interpret others’ frustration with lupus as frustration with YOU.
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DO
Do explain that lupus is unpredictable
Do show empathy for your listener
Do rehearse responses that you can say quickly and easily to explain the ever-changing effects of lupus
DON’T
Don’t apologize for or feel bad about what you can’t control
Don’t interpret others’ confusion as disapproval or judgment
Don’t interpret others’ frustration with lupus as frustration with you
DR. BETSY BENNETT
Let’s take a look at “Invisibility.” What are the dos and don’ts there?
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Invisibility
Due to lupus symptoms that others
can’t see or hear
DR. BETSY BENNETT
DO explain that most lupus symptoms are invisible to others because the damage is happening inside your body.
DO show empathy for your listener. They might want to help, but they don’t have anything “concrete” to respond to.
DO rehearse responses to explain why you can’t always see the effects of lupus. Remember we’re going to work on this in the activities!
So, what shouldn’t you do?
DO NOT start to wonder if it’s all in your head. It absolutely is not.
DON’T apologize for being sick. You can’t help it, and you don’t want to be sick!
And DON’T feel like you have to “prove” you’re sick.
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DO
Do explain that most lupus symptoms are invisible
Do show empathy for your listener
Do rehearse responses to explain why you can’t always see the effects of lupus
DON’T
Don’t start to wonder if it’s all in your head. It’s not
Don’t apologize for being sick. You can’t help it
Don’t feel like you have to “prove” you’re sick
DR. BETSY BENNETT
Challenge #3 is memory loss. What are some of the dos and don’ts there?
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Memory loss
A slowing down or forgetfulness that may be attributed to lupus
DR. BETSY BENNETT
DO explain that you may have trouble describing what’s going on with you. Ask your listener for patience.
DO take your time. It’s okay to provide a slower response than usual. There’s no hurry.
DO embrace your willingness to try, even when it’s hard.
Now you DON’T want to be embarrassed. If you stumble with your words a bit or forget something important, that’s fine. You’ll get there eventually. You don’t have to be perfect and you don’t have to be a perfect communicator. Being genuine and trying your best—that’s what counts.
DON’T let frustration get the better of you. Just take a deep breath. Let yourself be calm.
And DON’T let others’ ignorance or impatience make you feel bad about yourself.
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DO
Do explain you may have trouble describing what’s going on with you
Do take your time. It’s okay to provide a slower response than usual
Do embrace your willingness to try, even when it’s hard
DON’T
Don’t be embarrassed if you stumble with your words or forget something important
Don’t let frustration get the better of you
Don’t let others’ ignorance or impatience make you feel bad about yourself
DR. BETSY BENNETT
So, those were some big dos and don’ts. What can you do when you’re facing these challenges?
Let’s begin by creating a tool you’ll want to always keep close at hand. We call it the hip-pocket phrase. Go into your Hip Pocket PDF now and we’ll show you do to that. I’ll see you back here soon.
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Pause the video while you complete
Chapter 2 | Activity 1
In Your Hip Pocket
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Going Forward
DR. BETSY BENNETT
Congratulations on completing In Your Hip Pocket!
Most people may find your new ways of communicating about lupus information helpful. But how do you communicate with someone who doesn’t accept your efforts to explain how lupus is affecting you?
It could be:
• A healthcare provider who doubts your experience
• A family member who thinks you just need a “better attitude”
• A stranger or acquaintance who seems skeptical after you try to explain
• A friend who seems to be avoiding you
What can you do in those situations? First, step back and remember three important rules of relationships:
Rule No. 1: You can’t make anyone understand lupus who doesn’t want to understand it.
Rule No. 2: You can’t make someone be there for you “in sickness and in health.”
And Rule No. 3: You CAN love yourself and have gratitude for those who love you no matter what.
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Three Rules of Relationships
Rule No. 1: You can’t make anyone understand lupus who doesn’t want to understand it.
Rule No. 2: You can’t make someone be there for you “in sickness and in health.”
Rule No. 3: You CAN love yourself and have gratitude for those who love you no matter what.
DR. BETSY BENNETT
And remember: You can’t always get what you want. But more than likely, you can get the things you absolutely need.
Do you sometimes have trouble knowing the difference? When you’re ready, turn to your Wants and Needs activity PDF for a little help. And I’ll see you back here whenever you’re ready.
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Pause the video while you complete
Chapter 2 Activity 2
Wants and Needs
DR. BETSY BENNETT
Congratulations on completing Wants and Needs! We hope you’ve learned some new ways to look at the things you want and the things you need.
Before we finish Chapter 2, here are a couple of things to think about and a couple of things to notice. Think about:
• In cases where you can step away from a relationship that’s unsupportive, by all means step away. Use your energy (which is a precious resource when you have lupus!) to build relationships with people who love you as you are.
• Ask for help from a friend or family member as you work through this activity, especially as you seek ways to get your needs met. Sometimes someone else can help you find solutions that we just wouldn’t think of on our own.
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Things to Notice
DR. BETSY BENNETT
And a couple of things to notice:
• We live in an interdependent world. It’s not always easy or even possible to “break up with” people who make life with lupus more challenging.
• So, an important way to take control back from lupus is to understand what you want and what you need.
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“An important way to take control back from lupus is to understand what you want and what you need.”
Us in Lupus
DR. BETSY BENNETT
You understand that there’s nothing wrong with your wants, but you can get by without having them met by your doctor, a certain friend, or a particular family member.
Once you’ve determined whether your problem is an unmet want or an unmet need, how do you follow through?
Clearly communicating a need is just a three-step process. It’s easy to try. And it gets better with practice. It’s kind of like a recipe. We will use certain “ingredients,” added together in a certain order, to get a clearly stated need.
So here’s how it’s done:
You’ve got ingredient 1 + ingredient 2 + ingredient 3 and you get a clearly stated need.
DR. BETSY BENNETT
So, what is that first ingredient?
Start with an introduction that acknowledges the fact that your listener already knows you have lupus. So, you can say something like, “As you know, I have lupus ...”
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1. “As you know, I have lupus …”
DR. BETSY BENNETT
There it is. That’s ingredient number one. What’s number two?
Add your favorite hip-pocket phrase. So, you can say, “As you know, I have lupus. So, I actually feel pretty terrible, but my symptoms are internal, and you can’t see them.”
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2. “As you know, I have lupus. So I actually feel pretty terrible, but my symptoms are internal and you can’t see them.”
DR. BETSY BENNETT
So now we’ve added one and two. Now, we’re going to add three.
Finish with asking for what you need. “As you know, I have lupus. So, I actually feel pretty terrible, but my symptoms are internal, and you can’t see them. I need help finding another way to track Brandon’s homework.” There you have it, a clearly stated need.
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3. “As you know, I have lupus. So I actually feel pretty terrible, but my symptoms are internal, and you can’t see them. I need help finding another way to track Brandon’s homework.”
DR. BETSY BENNETT
So that’s the three-step process. That’s all it is.
• Acknowledge your lupus
• Add your favorite hip-pocket phrase
• And finish by asking for what you need.
Try to apply this process to your own daily conversations. If it's easy, that’s awesome. If you need more time to put your clearly stated need into your own words, that’s okay, too. It all takes practice.
Remember—these are lifelong skills and it’s okay if your progress feels slow. Your pace—whatever it is—is absolutely fine.
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Closing the Loop
DR. BETSY BENNETT:
Wow, that was a lot that we learned. Let’s close the loop on Chapter 2 with a few final thoughts.
When the person you’re speaking with provides what you need, give them a heartfelt thank-you. And if you can, tell them that you look forward to feeling well enough to return the favor sometime.
If the person doesn’t provide what you need, just move on to your next plan.
• Even if you feel angry or hurt at this point, it usually helps to just refocus on your goal: getting your needs met.
• Remember, when you respond by focusing on your needs, you are in control. Not lupus. Not anyone else. Just you.
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“When you respond by focusing on your needs, you are in control. Not lupus. Not anyone else. Just you.”
Us in Lupus
DR. BETSY BENNETT:
But then you might be wondering what about the wants? Staying focused on your needs is a great way to help you face many of the tough situations that you face with lupus. But what about trying to also get what you want?
First of all, acknowledge that whatever it is you want, it is okay to want it. Wanting in and of itself doesn’t make you selfish, or anything else. It makes you a human being!
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1) Acknowledge that whatever it is you want, it’s okay to want it.
DR. BETSY BENNETT:
Secondthing is, look around you. Identify the people in your life who are willing to give you the support you want because they genuinely care about you.
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2) Look around you.
DR. BETSY BENNETT:
And number three, remember that you are not alone in wanting something from someone who’s unable or unwilling to give it. A core challenge for all people—young or old, rich/poor, healthy or sick—is coping with wanting something that you just can’t have. It is okay to struggle with this! You are not alone.
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3) Remember that you are not alone.
DR. BETSY BENNETT:
And then number four, focus on the things you want that you are getting. And be sure to take time to be grateful for those people and those things in your life.
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4) Focus on the things you want that you are getting.
DR. BETSY BENNETT:
Last, re-evaluate those people in your life who are giving you very little of what you want or need. It just might be time to reinvest in other relationships.
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5) Re-evaluate those people in your life.
DR. BETSY BENNETT:
We have given you a lot to think about in Chapter 2. Take your time to digest it and practice your new skills, and we’ll see you back here for Chapter 3 whenever you’re ready. Take care and I look forward to seeing you soon.
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Us in Lupus
We’re better together.
Trademarks are owned by or licensed to the GSK group of companies.
©2021 GSK or licensor.
LPUVID210003 June 2021
Produced in USA.
Chapter 2:
Overcoming Challenges
Communication is sometimes hard for people living with lupus. Learn how to overcome these challenges in just three steps. Plus, develop your own key phrases to help you communicate with confidence. Then, take more control by understanding your wants and needs and how they differ.
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CHAPTER 3 VIDEO TRANSCRIPT:
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Us in Lupus
We’re better together.
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Speaking of Lupus
Chapter 3
The Doctor-Patient Relationship
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DR. BETSY BENNETT
Clinical Health Psychologist
Dr. Betsy Bennett was compensated by GSK for participation.
DR. BETSY BENNETT
Hi there and welcome to Speaking of Lupus, Chapter 3! It’s good to see you again. With the activities from the last two chapters, you’ve been practicing communication basics.
And if this is your first time watching our Chapter 3 video, just keep watching.
If you’ve returned to continue watching Chapter 3, you can jump ahead by clicking on one of the buttons on the side of your screen.
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Select a button on the side to jump ahead or wait a few seconds to continue watching Chapter 3 in order.
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Communicating With Your Doctor
DR. BETSY BENNETT
Now, let’s look at some of the most important communicating you do as a lupus patient:
Communicating with your doctor.
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Did You Know?
DR. BETSY BENNETT
Did you know that doctor-patient communication is actually a special type of communicating?
• It’s different from communicating with friends, loved ones, or acquaintances.
• It also requires skills that may be new to you.
• And learning and practicing these skills can lead to an improved relationship with your doctor that can help your doctor better manage your lupus.
Many lupus patients report very productive relationships with their physicians. But many do not for lots of different reasons.
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Many lupus patients report very productive relationships with their physicians.
DR. BETSY BENNETT
Many patients report less-than-satisfying relationships with their doctors. Working through the activities in this chapter may help you improve your relationship with your doctor.
• So, if you already work well with your doctor, you may see your relationship grow even stronger.
• And if you struggle to connect with your doctor, you might find that these techniques lead to significant improvements.
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“If you struggle to connect with your doctor, you might find that these techniques lead to significant improvements.”
Us in Lupus
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Remember, you don’t have to do it all at once.
DR. BETSY BENNETT
And one more thing: don’t be intimidated by what’s ahead in this chapter. It’s doable, and remember that you don’t have to do it all at once.
If you can learn even a few of these skills, you may just see your relationship with your doctor change for the better.
And like any relationship, your relationship with your doctor requires empathy: empathy for yourself, and empathy for your doctor.
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Your relationship with your doctor requires empathy: empathy for yourself, and empathy for your doctor.
DR. BETSY BENNETT
So, let’s review some facts to keep in mind about your doctor.
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Fact #1
Some doctors have as little as 10 minutes to spend with a patient they already know.
DR. BETSY BENNETT
Fact #1: Your doctor has only limited time to spend with you. Some doctors have as little as 10 minutes to spend with a patient they already know.
• So, it’s absolutely critical that you be organized and prepared for your appointment. (But don’t worry—we’re going to show you how to do this!)
• Don’t be too concerned about the limited time you have with your doctor. When you’re prepared, you are going to be surprised at how much you can accomplish in just 10 minutes.
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Fact #2
Doctors are people.
DR. BETSY BENNETT
FACT #2: It’s important to remember that doctors are people. They have good days and not-so-good days. They get headaches. Sometimes they miss lunch.
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Fact #3
Doctors can be frustrated, too!
DR. BETSY BENNETT
Fact #3: Doctors often feel frustrated when they can’t help their patients. Doctors get frustrated with lupus . . . just like you do. But don’t let this keep you from telling your doctor the truth about how you’re really feeling.
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Fact #4
Doctors appreciate patients who are partners.
DR. BETSY BENNETT
FACT #4: Doctors appreciate patients who are partners: patients who take an active role in managing lupus. (And don’t worry, we’re going to help you with that, too!)
There are concrete things you can do to improve your relationship with your doctor TODAY, so let’s get started!
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First, reframe
DR. BETSY BENNETT
The first thing to do to improve your relationship with your doctor is to reframe your doctor-patient relationship. What does that mean? Reframe?
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Reframe
It means thinking about your relationship with your doctor in a whole new way.
DR. BETSY BENNETT
It means thinking about your relationship with your doctor in a whole new way.
Turns out that many skilled patients with chronic diseases find it helpful to think of their doctor as a business partner or consultant. That means:
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• Your doctor is usually not your friend.
• Your doctor has a job, and you have a job.
• Your doctor is here to help you.
• By working together, you can succeed at the “business” of keeping your lupus managed.
DR. BETSY BENNETT
• Your doctor is usually not your friend.
• Your doctor has a job, and you have a job.
• Your doctor is here to help you.
• And by working together, you can succeed at the “business” of keeping your lupus managed.
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Know Your Job As A Lupus Patient
DR. BETSY BENNETT
Now you might be thinking, “Wait. I have a job?!” Yes. Both you and your doctor have a job. It’s natural to think about the doctor’s job. But have you thought about your job in this partnership?
The next activity will help you reframe your doctor-patient relationship by first taking a look at your role in this important partnership.
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Chapter 3 | Activity 1
What’s My Job?
DR. BETSY BENNETT
You’re also going to use some of the skills you built in Chapter 2 to determine your wants and needs when it comes to your physician. These wants and needs may be different than those in your other relationships. I’ll see you back here soon.
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Pause the video while you complete
Chapter 3 | Activity 1
What’s My Job?
DR. BETSY BENNETT
How did you do completing the "What's My Job?" activity? Did you ace the job description quiz? If you did, that’s awesome! But you'll still want to continue working through all of the activities. And if some of the aspects of your job as a lupus patient came as a surprise to you, that's okay, too!
We’re going to cover them all in more detail later in the chapter. Simply being aware of the parts of the doctor-patient relationship that you control is a such a great start to reframing your relationship.
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Chapter 3 | Activity 2
Preparing for an Appointment
DR. BETSY BENNETT
Next, we're going to focus on preparing for a doctor's appointment. We'll explain everything you need to know to effectively prepare for your next appointment in the second activity of this chapter.
By the time you’re finished, you’ll know a whole lot more about how to do your job as a lupus patient and prepare for every appointment. I’ll see you back here soon.
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Pause the video while you complete
Chapter 3 | Activity 2
Preparing for an Appointment
DR. BETSY BENNETT
Welcome back! How was preparing for the appointment? Did you learn anything new? I hope so. How about when it came to documenting how lupus is affecting your life?
Even if it may seem as though your doctor is interested in just your symptoms and lab results, they do need to know more than that. It's also important that they hear how lupus may be preventing you from doing the things that you enjoy.
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“It's also important that they hear how lupus may be preventing you from doing the things you enjoy.”
Us in Lupus
DR. BETSY BENNETT
Knowing if your symptoms are causing you to miss out on activities or interrupting your daily life will help you both determine if your treatment plan needs to be adjusted.
So, as we close out on Chapter 3, I'd like to leave you with just a few more thoughts.
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Practicing your communication skills may be the most valuable part of preparing for your doctor's appointment.
DR. BETSY BENNETT
It may seem hard to believe, but practicing your communication skills may be the most valuable part of preparing for your doctor's appointment. Even if practicing out loud feels kind of funny or strange, just give it a try and keep trying! You'll notice right away how much more effective you are as a communicator when you practice. So don't be shy. Head over to the mirror and go at it.
We will see you back here for Chapter 4! Thanks, and take care.
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Us in Lupus
We’re better together.
ON-SCREEN TEXT:
Us in Lupus
We’re better together.
Trademarks are owned by or licensed to the GSK group of companies.
©2021 GSK or licensor.
LPUVID210004 June 2021
Produced in USA.
Chapter 3:
The Doctor-Patient Relationship
Take a look at some of the most important communicating you do as a lupus patient. See your relationship with your doctor in a whole new light and prepare for your time together. It’s time to apply the skills you’ve been learning and put them into action in talking to your doctor.
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View Transcript
CHAPTER 4 VIDEO TRANSCRIPT:
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Us in Lupus
We’re better together.
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Speaking of Lupus
Chapter 4
Going Forward – Things to Think About
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DR. BETSY BENNETT
Clinical Health Psychologist
Dr. Betsy Bennett was compensated by GSK for participation.
DR. BETSY BENNETT
Hi there and welcome back to Speaking of Lupus!
You’ve made it all the way to the end, but remember—this is just the start of your journey to more confident and clear communication.
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“Learning to more fully appreciate yourself, to feel more confident, and to communicate in new ways is a process. It’s not an event.”
Us in Lupus
DR. BETSY BENNETT
Learning to more fully appreciate yourself, to feel more confident, and to communicate in new ways is a process. It’s not an event.
So, in that spirit, Chapter 4 has two activities to help you refine and refresh the skills you've been working on.
Before we begin, here are a few suggestions to help you get the most from Chapter 4.
First of all, if you haven’t worked through the rest of the Speaking of Lupus series, do that first. And just take your time. When you’re finished, come back to this chapter.
Number 2, if it’s been a while since you worked through the series, it’s probably a good idea to take a couple of days to refresh your memory and review the activities. It will take a little bit of time, but it’s also valuable practice that will make your skills just that much stronger.
Now, if you’re ready, let’s get started with the first activity of this final chapter.
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Chapter 4 | Activity 1
Sorting Out Wants and Needs
DR. BETSY BENNETT
You probably recall in Chapter 2 when you spent time sorting out your wants and needs and thinking about how they are different. Here’s a quick refresher on how they are different.
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You may want your doctor to show an interest in your personal life, but you need him or her to provide expert and up-to-date care.
DR. BETSY BENNETT
You may want your doctor to show an interest in your personal life, but you need him or her to provide expert and up-to-date care.
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You probably want the check-in staff at the office to show you some compassion, but you really only need them to check you in quickly and accurately.
DR. BETSY BENNETT
You probably want the check-in staff at the office to show you some compassion, but you really only need them to check you in quickly and accurately.
Remember the difference? Distinguishing between wants and needs isn’t usually hard, but it can be tricky, especially in healthcare situations.
DR. BETSY BENNETT:
Begin your Sorting Out Wants and Needs activity now, where we will take a look at some of these tricky situations.
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Pause the video while you complete
Chapter 4 | Activity 1
Sorting Out Wants and Needs
DR. BETSY BENNETT:
Now that you’ve completed Chapter 4’s first activity, Sorting Out Wants and Needs, how are you feeling about that? Here are some things to think about. First of all:
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1. Don’t feel bad about having wants.
2. Problem-solving is important in healthcare.
3. Problem-solving skills keep you in control.
DR. BETSY BENNETT:
1. Don’t feel bad about having wants. Wanting something isn’t bad—and it certainly isn’t selfish.
2. Problem-solving is so important in healthcare. You won’t find a rheumatologist on every street corner, and you can’t always choose a medical office or ER staff. It may not be easy, or even the best idea, to step away from some healthcare relationships. To really make these relationships work, you need strong problem-solving skills.
3. Third thing to know is that problem-solving skills keep you in control. There may be many times that you can’t change the situation, but you can absolutely change the way you think about it.
So, let’s move on to the second activity in Chapter 4. You might want to take a break and that’s okay. Just pause for a few minutes—or even a few days if that feels better for you—and then come on back here for Activity 2.
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Chapter 4 | Activity 2
Communicating Your Needs Clearly
DR. BETSY BENNETT:
In this activity, called Communicating Your Needs Clearly, you’ll explore doing just that. It’s another way to stay in control. After all, once you identify something as a real need, it’s especially important to be able to express it clearly and confidently.
Earlier in the series, we shared with you a three-step process for clearly communicating your needs. In that activity, you practiced conveying your needs to people who don’t understand lupus or how it affects your everyday life.
This time, we’re going to practice communicating needs in a healthcare setting—talking to people who already know a lot about lupus. As a professional in their field, your doctor doesn’t need to be educated on the effects of lupus, but they do need to be informed on what’s going on with you. Why don’t you go ahead and try Activity 2 now?
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Pause the video while you complete
Chapter 4 | Activity 2
Communicating Your Needs Clearly
DR. BETSY BENNETT:
Welcome back! How was Activity 2? I hope you learned something. Before we finish that out, let’s just add a few pointers to the skills you just practiced in the last two activities … Sorting Out Wants and Needs and Communicating Your Needs Clearly.
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Going Forward
DR. BETSY BENNETT:
Pointer number one is this: Acknowledge best intentions. Try to remember that you can’t really know what’s going on in someone else’s head.
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Acknowledge Best Intentions
DR. BETSY BENNETT:
For example, if a staff member is rude, you may not feel like they’re trying to help you at all.
And it might feel really dishonest to say, “I know you’re trying to help me.” But the truth is, you don’t really know what that person’s intentions are. For all you know, she could be irritated by her slow computer—she’s genuinely trying to help you and the computer is getting in the way!
Taking her bad day out on you, totally not okay. But chances are she’s in a healthcare job because she wants to help people.
And when you thank her, you’ll remind her of why she’s doing the work she’s doing. You remind her of her values. And that may help her find a way to listen to you and become more helpful.
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Peaceful Does Not Equal Passive
DR. BETSY BENNETT:
It’s also true that peaceful is not passive. You may notice that the three-step process you practiced creates a message that is not angry. It’s not demanding. But it’s also not passive. It’s a style of communicating that will help you get what you need without creating hostility.
In fact, this process can sometimes help us get our needs met and make our interactions more rewarding.
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“Own” Your Feelings
DR. BETSY BENNETT:
Another pointer is this. Be sure to “own” your feelings. It can be so easy to say things like, “You’re making me feel . . .” or “I can’t do this because you’re doing that.” But when you clearly identify your feelings or actions as belonging to YOU, it’s actually a way of regaining control. Your thoughts, your feelings, your actions, they’re driven by you—not anybody else.
And, as a bonus, stating your feelings as belonging to you helps minimize conflict, and that makes getting your problem solved much more likely.
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“Stating your feelings as belonging to you helps minimize conflict, and that makes getting your problem solved much more likely.
DR. BETSY BENNETT:
Sometimes what you really need is a chance to talk about the problem. That’s another pointer.
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Talk About The Problem
DR. BETSY BENNETT:
For example, maybe your doctor is using his or her computer during your appointment to maybe take notes or look up information that’s important for your care.
DR. BETSY BENNETT:
But you still need to be reassured that your doctor is listening to you and listening to you carefully. So, instead of asking them to put the computer aside, maybe the better idea is to ask them to talk about it. Asking for a discussion often leads to better understanding and joint problem solving.
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Asking for a discussion often leads to better understanding and joint problem solving.
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It Gets Easier With Practice
DR. BETSY BENNETT:
It gets easier with practice. Remember that learning to communicate confidently is a skill that might require letting go of some old habits.
We all have our go-to ways of communicating in times of stress. Some people get really angry. Others become quiet and passive. But to communicate your needs well, your go-to style, it’s probably not going to work.
If you take the time to practice clear and confident communication, you’ll find that it’s eventually going to come much more naturally to you.
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If you take the time to practice clear and confident communication, you’ll find that it’s eventually going to come much more naturally to you.
Us in Lupus
DR. BETSY BENNETT:
And practicing with a trusted friend or family member can help you find the words to make your new skills truly yours.
When the person you’re dealing with provides you with what you need, be sure to thank them sincerely. Remember, you’re in a “long-term relationship” with your doctor’s office staff, so it is important to try to make it work!
But, if the person can’t or won’t provide what you need, move on to your next solution. (That’s why we had you write out at least three ideas!)
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• Don’t let emotions get the best of you.
• Save energy for getting what you need!
• Ask for help creating more solutions.
DR. BETSY BENNETT:
And even if you feel angry or hurt at this point, don’t let it get the best of you. Save your energy and keep laser-focused on getting what you need!
Also, don’t be afraid to ask a friend or loved one to help you create even more potential solutions. Just keep at it and you eventually are going to get there!
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“When you focus on your needs, you are the one who’s in control. Not lupus. Not anyone else. JUST YOU.”
Us in Lupus
DR. BETSY BENNETT:
Always remember that when you focus on your needs, you are the one who’s in control. Not lupus. Not anyone else.
Just YOU.
DR. BETSY BENNETT:
As always, we have so enjoyed bringing you information and activities for navigating life with lupus.
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Learning to more fully appreciate yourself, to be more confident, and to communicate in new ways is a process, not an event
DR. BETSY BENNETT:
As we mentioned at the start, learning to more fully appreciate yourself, to be more confident, and to communicate in new ways, it’s a process. It’s not a one-time event. And the best way to move forward on that journey is to practice!
DR. BETSY BENNETT:
Anytime you practice, you move forward, even if things don’t go exactly the way you had planned.
Forget about perfect. When you try something new, chances are it’s just not going to be perfect. So don’t expect it to be. Let go of that.
But practicing should always make you proud! Thanks for putting in the time and effort to work with us. We hope that every skill you acquire will help you build better relationships with friends, family members, and your doctor.
We’re so proud of you, and we hope you’re proud of yourself, too!
And whenever you need to feel supported along your journey, remember, you’re not alone in this. Others living with lupus are going through similar things and it can be so helpful to share your experiences.
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@UsinLupus
Instagram Facebook
#SpeakingofLupus
DR. BETSY BENNETT:
You can always visit our UsinLupus social communities and connect with other lupus warriors just like you. Consider sharing your #SpeakingofLupus thoughts, challenges and “Aha!” moments to stay motivated and encourage others.
Thank you again for joining us! Take care.
ON-SCREEN TEXT:
Us in Lupus
We’re better together.
ON-SCREEN TEXT:
Us in Lupus
We’re better together.
Trademarks are owned by or licensed to the GSK group of companies.
©2021 GSK or licensor.
LPUVID210005 June 2021
Produced in USA.
Chapter 4:
Going Forward
Congratulations on working through the entire Speaking of Lupus program! Now, we’ll bring together all the skills you’ve been building and put them into practice. If it’s been a while, take a couple of days to refresh your memory and review each chapter’s completed activities.
Sorting Out Wants and Needs.pdf
Communicating Your Needs Clearly.pdf
