We have a new granddaughter – Eliana Rose – and she is indeed a rose. Perfect. Beautiful. In her six short weeks on Earth, I have kissed her hundreds of times and told her almost as many times that she is "so pretty."
My daughter is strikingly beautiful. When she was little, I told her often "you're so pretty." After her bath, I would put lotion on her, rub her back and say "oh, Kimberly, you have such a pretty back." I realized one evening that perhaps I overdid it. When her aunt told her, "Kimberly, you look pretty tonight," her response was, "Well, you should see my back!"
How many times have I said the word "pretty" to my daughter and now my grand-daughter? What does pretty really even mean?
My mom suffered miserably for nearly two decades with fibromyalgia. Her pain was intense. It took years to get the diagnosis and even more years to find a doctor who believed in the reality of fibromyalgia as a disease – not just depression, it's all in your head, you're not trying hard enough, you should think more positively, blah, blah, blah.
In the last five years of her life, Mom was also dependent 24/7 on oxygen and she saw the doctor frequently. Invariably, his first words were "Dorothy, you look so good today! You must be feeling better."
Because she looked good – pretty – he immediately assumed she was better. He didn't know that she got up at 4:30 that morning, hours before her appointment, to get ready to see him. The shower alone was exhausting and recovery took nearly an hour. Add another hour to apply makeup and then rest. Sit for thirty minutes with the ice pack on top of her head and the heating pad on her neck. Put on her clothes. Sit down, catch her breath, put on her shoes. She couldn't raise her arms to fix her hair, but she tried. And tried. By the time she was done trying – and her hair looked decent – she was again exhausted. Rest again. Finally, she was ready to get in the car and go to the doctor.
And hear "Dorothy, you look so good today! You must be feeling better."
What does how we look have to do with how we feel? Admittedly, sometimes getting out of bed, taking a shower, putting on makeup (for us women), and making an effort to look presentable can increase our feeling of self-worth. We've been socialized to believe that a nice outward appearance can mean a good inside. We are often judged first by our appearance, and first impressions can last a long time.
But I refuse to believe that just because my mom took extra time and effort to look nice when she saw her doctor meant that she felt better. She still couldn't breathe. She was still in pain. And with that comment, she felt both complimented and minimized.
Words matter. Communicating with our healthcare providers can be difficult, especially when we talk about the subjective symptoms of fibromyalgia such as brain fog, pain, fatigue, and insomnia. What words do we use so that our doctor knows that while we might look nice on the outside, inside we are screaming and really need help?!
In her article Talking to Your Doctor About Fibromyalgia, Dr. Dawn Marcus makes the following suggestions:
Develop Good Communication Skills
Make a Written List
Prioritize Your Symptoms – Be Prepared
Ask Direct Questions and Say What You Mean
Speak Up and Share What's Really Bothering You
Be a Good Reflector – Restate What You Hear for Clarification.
Martine Ehrenclou, author of The Take-Charge Patient: How You Can Get the Best Medical Care, notes that "Your relationship with your doctor is really the cornerstone of good health care." Without good communication as the foundation, that cornerstone cannot be set.
So how did my mom and I handle the doctor telling her she “looked nice.” While Mom always beamed – she loved her doctor and even had a bit of a crush on him – I steamed. But I also knew better than to confront him while Mom sat there. My mom was born in 1940, and she was of the generation that believed in the superiority of men as a species, multiplied exponentially when they had a medical degree. He was the doctor and his word was gospel. So I made a plan:
- A spreadsheet recording all of her medications, their purpose and their interactions with other medicines;
- A journal of her most recent health experience, including both concerns and good times;
- A print-out of the most recent research I had found about her various symptoms; and
- A list of questions prioritized to make good use of the few minutes we had with him.
We walked out of his office with Mom beaming from the compliment and me steaming a little less with most of my questions answered.
A few years before her death, that doctor became a hospitalist and no longer saw patients in private practice. While visiting someone in the hospital about six months after Mom died, I saw him and he asked how she was, to which I replied, “She died in December.
Cindy Leyland is ProHealth's Fibromyalgia Editor. Cindy also serves as the Director of Program Operations at the Center for Practical Bioethics and the PAINS Project Director. She lives in Kansas City with her husband, enjoys hiking, reading, volunteering with Synergy Services and being Gramma Cindy.