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Lupus Coping Corner

Strategies for Speaking with Your Lupus Doctor

Jessica Rowshandel, M.S.W.
Amy Caron
Project Director
Lupus Research Institute

Dear Jessica,

I tell the doctors how I feel and they look at me like I am lying, and it’s so depressing. I need to find a doctor who knows about lupus.

-APL

Dear Jessica,

I am under a doctor’s care, but some times I don't think he understands what I'm trying to say about what is happening with me.

-AMW


Getting to “Got It!” with Your Doc

Open communication is critical, especially with diseases like lupus that can change spontaneously and give you unexpected (and often unwelcome) surprises.

If you feel that your doctor doesn’t believe you or doesn’t understand you, there’s a communication roadblock.

Finding the Two-Way Street

In a perfect world, the relationship between you would be a partnership in which you felt that all of your questions were answered in clear and easy-to-understand language, and all of your medical needs met with patience and empathy.

The reality is that the communication channels between doctors and patients are sometimes not even remotely picturesque.

There are many reasons why—including how things are communicated.

Use “I” Statements

It’s important for you to become your own advocate in an attempt to improve the flow of communication As Sefra Kobrin Pitzele says in her book, We Are Not Alone: Learning to Live with Chronic Illness, “Your job is to do everything in your power to help your doctor help you.”

Be assertive, yet diplomatic. Let the doctor know that you understand how busy she must be, and include the ways that you appreciate her. That said, continue to explain the needs that you still have.

For example, “Doc, I know you really care about my health and want the best for me, but sometimes when I come in here and tell you what’s going on with me, I don’t feel that you believe me or really try to imagine what I’m going through. I end up feeling worse.”

Or maybe, “Doc, I know you have a million patients you’re trying to take care of at once, but I need to let you know about these new symptoms…and I need to feel that you are taking in what I am saying.”

The use of “I” statements such as these comes across very differently than “you” statements such as “You don’t understand me and I can’t take it!”

“I” statements, in contrast, avoid putting the other person on the defensive and placing blame—but still send a message loud and clear.

Take It Another Step

To learn more on communicating assertively yet diplomatically, check out the University of Buffalo’s tip sheet “The Language of Assertiveness.”

Another resources is the the University of San Francisco Medical Center’s practical and comprehensive guide called “Communicating with Your Doctor,” which includes some of my personal favorites: keeping a diary of new symptoms and keeping a list of questions you think of between visits.

Time To Fire Your Doctor?

From my experience, doctors are not purposely trying to upset you. Between hectic schedules, time constraints, and the intermingling of a wide variety of personality traits, someone is bound to make someone else unhappy, even if unintentionally.

Often doctors appreciate knowing if there is something that you are unhappy with so that they can be careful not to repeat the same behavior, which is why it’s vital for you to open up about your feelings. The doctor will likely respond positively and communication will begin flowing again.

I wouldn’t suggest firing your doctor unless you have made valid attempts at expressing your concerns. If she dismisses them or takes offense to what you are saying, well, maybe it’s time to consider finding someone who can better meet your needs.

Sometimes relationships don’t work out and it’s time to break up.

Practice, Practice, Practice

Being assertive and diplomatic can be easier said than done. It takes practice and, at first, can be scary. 

Don’t be shy. Practice what you would like to say with a friend, or write it down in a journal. Work through the fear and eventually you will get the hang of it. It’s worth it in the end if it means that your relationship with your doctor grows into the partnership you need it to be.


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Lupus Coping Corner

Disclaimer: The information provided by the S.L.E Lupus Foundation is for educational purposes only and should not be used for diagnosing or treating a medical or mental illness, nor be a substitute for professional care. Consult your healthcare provider if you have or suspect you may have a medical or mental health problem.

Amy Caron, MPH is a lupus patient and Project Director of the Lupus Research Institute provider education initiative.  She is not a physician or counselor.  The suggestions shared in this column are strictly opinions from the perspective of a lay person with lupus. Lupus is a very individualized illness; consult a healthcare professional before making any decisions about your care.

The S.L.E. Lupus Foundation does not provide any direct medical or psychological services nor recommend or endorse any particular treatment or therapy. The S.L.E. Lupus Foundation employees, consultants, and agents shall not be liable for any claims or damages, and expressly disclaim all liability of any nature for any action or non-action taken as a result of the information generated by the S.L.E. Lupus Foundation programs and its website, as well as the S.L.E. Lupus Foundation Facebook and Twitter pages.