Tips for Communicating With Your Lupus Doctor

When you have lupus, your rheumatologist is one of the most important people in your life. If you and your rheumatologist aren't communicating well, it's important to examine what's going on between you two and figure out what can be done to improve the situation.

To be fair, communication goes both ways. It is not solely your responsibility to make sure that you and your doctor are communicating well. But the only person's communication skills you have control over are your own. Therefore, it's important to develop and practice these skills.

Communicating well with your doctor also has everything to do with you being your own best advocate. You are the only one who experiences your body. If a doctor doesn't quite grasp the severity of your pain or other symptoms, this lack of understanding could influence your treatment plan and, ultimately, your health.

Plus, doctors are people too, and some communicate and listen better than others. Some have warmer personalities than others. Some are easier to get along with than others. The dynamics of the relationship influence your experience as a patient.

You and your doctor are in a special relationship. And the foundation of all good relationships is good communication.

“Your job is to do everything in your power to help your doctor help you.” -Kobrin Pitzele

Engage in Good Communication

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If we lived in a perfect world, everyone would communicate well. Everything that people say would be clear and easy to understand. People would never misinterpret another person's words. When people talk, others would listen carefully.

For example, you'd say you were in pain and others would respond with empathy, expressing sincere concern. They'd ask you to describe the pain so they could get a better understanding of what it might be like for you. And then you'd explain in a way that helped them understand. Because they have a new understanding of your experience, this motivates them to comfort and support you in any way they could.

When it comes to your doctors, they would never "listen" to you while in a hurry, while thinking about other things, or while brushing off words like pain and fatigue. They would never confuse being fatigued as being tired or stressed. They would never assume that just because fatigue and pain are extremely common for people with lupus, that this means that the symptoms aren't serious. They would truly hear you when you explain that these common symptoms have a big impact on your life.

They'd explain that their main concern is protecting your organs and preventing you from a life-threatening flare. You'd thank them and express utter appreciation. You would say that you know you both have different priorities: You want to also address your daily discomfort because it impacts your quality of life and ability to do things like go to work and care for your children.

Because you and your doctor have communicated well, you can now work together to figure out how to move forward with your treatment, addressing both of your concerns.

This type of relationship between a doctor and a patient is possible with good communication.

Use "I" Statements

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When there's a conflict, no matter how big or small, it's helpful to frame your concerns in terms of how you feel by using "I" statements.

We tend to communicate using "you" statements, but these statements can feel more blaming and accusatory than "I" statements. Dealing with conflict can be awkward and uncomfortable. The person being confronted might feel embarrassed, might disagree and might become defensive. "You" statements are like verbal finger pointing.

"I" statements are a less aggressive way to confront a person and explain your feelings. The person being confronted might still feel embarrassed and become defensive, but the hope is that using "I"statements will ease the tension a bit and lower the person's level of defensiveness.

Becoming defensive is a barrier to listening well to what the other person has to say because when you're the target of "you" statements, all you can think about is how to defend yourself. This is not helpful for communication.

"I" statements help you own your emotions as your personal response to a situation. Your feelings belong to you and no one else. However, what you are saying is that your feelings were caused by a certain behavior that the other person displayed toward you, and you would like them to change that behavior. Minimizing the other person's defensiveness with "I" statements will hopefully help them hear you and take your concerns seriously, opening the doors for effective communication.

An example of a "you" statement is, "You dismissed my symptoms and complaints because you assume they're caused by my weight. You're fat phobic.They're not caused by my weight, and you should listen to me when I tell you to look more deeply into this."

And example of an "I" statement is, "The last time I saw you, I brought up a concern about pain in my knees, and you mentioned that you thought it was related to my weight since I am overweight. I feel that sometimes my concerns are blamed on my weight when they should be examined more deeply. While weight could be a factor, I don't think it should always be assumed to be the cause."

Be Assertive, Not Aggressive or Passive

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Using "I" statements is a way of being assertive. Being assertive is far from different than being aggressive. Aggression - like being mean, yelling, pointing fingers, threatening another person, or making unreasonable demands - is not a form of good communication. No one likes to be on the receiving end of this type of behavior.

Often, people mistake aggression for assertiveness. They see aggression as them standing up for themselves or putting another person in their place. But just like "you" statements convey blame and put the other person on the defensive, so does aggression. It can also be threatening and abusive. And when someone is on the defensive, especially if they truly need to protect themselves from aggressive behavior, the last thing they are thinking about is how to listen well. They are thinking of what they are going to say or do to defend themselves.

At the same time, being too accommodating and passive isn't helpful either. For example, some people think that being a "good patient" will get the doctor to like them more, and if the doctor likes them more, they will get better care. This is understandable. The doctor holds a lot of power. They have access to medical knowledge and treatment that a patient usually does not. However, being a "good patient" doesn't necessarily lead to better care. It's important to be able to speak up for yourself in a productive, honest, and assertive way. If you have a concern, speak up. If you don't agree with something the doctor is suggesting, speak up. If you are unhappy with your medical care for any reason, speak up. Respectfully speaking up and using I-Statements are ways to be assertive and advocate for yourself.

Prepare for Your Appointments

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Preparing for your appointments might not seem like it is part of good communication, but it is. When you visit with your doctor, being prepared helps streamline communication. You're clear, to the point, and organized. Can you see how being the opposite of these things would hinder communication? Being scattered can garble what you are trying to say and make it hard for your doctor to follow you. If your doctor can't follow what you are saying, then they might miss something important.

Between appointments, keep a list of questions that you think of. Write them down right away, or you will forget them. Before your appointment, look at the questions and write the most important ones at the top of your list. You might not have time for them all and will want to get the most important questions answered.

Maybe you don't have questions but a list of things you want to update your doctor with - a new doctor you're seeing for another condition, another diagnosis, new symptoms or an improvement in symptoms. Let your doctor know these things. They are important and could impact your care. Write them down so you don't forget.

Similarly, keep a list of any new symptoms you experience between appointments. It's important to let your doctor know about these. Your doctor needs to monitor them and might provide treatment for them. Keep track of any medication side effects, as well. (However, if you experience serious or life-threatening side effects, you need to go to the emergency room!).

At the appointment, to help make sure that you understand and remember what your doctor is communicating to you, take notes. And then review those notes with your doctor to make sure they are accurate.

Find Out How to Reach Your Doctor Outside of Appointments

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Your appointments might be where the bulk of communicating with your doctor will take place, but there will be times when you need to speak with your doctor outside of your scheduled appointments. Such times could include if you are in a flare, are having medication side effects, or if you end up in an emergency room. You have to know how to get in touch with your doctor. Speak with them about this. They might have a cell phone number or a number they give to their patients for urgent and emergency situations.

Don't Forget About the Office Staff

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A major part of your experience at your doctor's office is related to their staff. Having good communication skills with your doctor but communicating poorly with office staff - like being aggressive or unfairly demanding with them - is not helpful to you. People who work with your doctor are important, too. Yet, they often go overlooked because they are not doctors.

They are the ones who help squeeze you in for appointments, are often the go-between with you and your insurance company, get your copies of medical paperwork, and so on. Be sure to treat them well and practice good communication with them, too.

Practice Makes Perfect

Good communication is a skill that can be developed with practice. It's a skill with many benefits, and in this case, the benefit is that it will help improve your relationship with your doctor. Even if you get along well with your doctor, these skills can only help to make your relationship better. And that, in turn, can only help improve the type of medical care you receive. Yes, it takes practice, which means you might not get it right the first several times. But it's worth the effort because you and your health are worth the effort.

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