Tannaz Motevalli

Tannaz Motevalli is the Exhibition Coordinator at the National Library of Medicine, an artist, a researcher, and a writer. She also lives with cystic fibrosis (CF).

Experiencing fewer pulmonary symptoms than most CF patients, Tannaz often felt she wasn’t “sick enough.” She struggled with the idea that she could skip her medication and be okay, while others had no option. She was consistently afraid of being yelled at for not being compliant. But her actions were simply her way with dealing with her illness. She knew that they weren’t rational decisions.

But Tannaz felt like her priorities as a patient were never heard, especially when she was a pediatric patient. Switching to an adult clinic gave her more of a voice, but also initially made her feel more alone in navigating her condition. Her mother (who was also a nurse) was no longer by her side and she had to learn how to adjust.

She found herself frequently wishing her doctors had more empathy, but as time progressed she realized this trait was something important for her to learn too.

A Job as An SP

SPs are “standardized patients,” or actors hired by medical schools to help their students learn how to interact with patients through simulation exercises. The SPs are trained on how to represent a patient’s character, what their priorities are, their medical history, and what their personality is like.

As Tannaz was transitioning from pediatric to adult care, she also took a job as a SP. It was through this position that she learned that empathy is not only important for providers to practice, but for patients as well. Tannaz also learned that self-advocacy is essential. As both a patient and a SP, she had to learn how to speak up for herself, her priorities, and the care she wanted. She had to learn how to have hard conversations.

At the adult clinic she clearly outlined some of her priorities and what specifically defined good care for her as an individual patient. Some of these priorities included-

• Collaborative decision-making
• Being treated not just as a patient, but as a person
• A safe space to share vulnerable information
• The opportunity to have gender-affirming conversations
• Not being looked down upon when she is not able to prioritize her diagnosis

Tannaz shares one story when she asked her nurse to call her to answer her lengthy MyChart messages instead of responding with a one word reply. While she was incredibly anxious to do so, it led to a much more comfortable and pleasant relationship with her provider and she was so grateful she had the courage to have that conversation with her.

“Any doctor’s office should be a safe environment for you to address all your concerns, big and small; but sometimes the burden is on us to make room for that to happen by making the first step.”

Tannaz wanted to be able to have the hard conversations with her providers about her social life and sexual life. As a queer immigrant and artist, she has a unique identity and perspective on life that she wanted to be able to communicate with her doctors. She was tired of the incorrect assumptions. She was also tired of limited explanations from her doctors. She wanted to know more about her illness and treatment. She wanted to feel more in control.

A New-Found Strength

Through these experiences, Tannaz was also able to come to realize that her strength as a patient was being one of the “healthier” individuals with CF. Instead of feeling insecure because she wasn’t “sick enough,” she could utilize her health to be a voice for the CF community. By traveling, writing, speaking, and making art about her experiences she could spread awareness about the struggle of thousands.

However the greatest thing that Tannaz learned, through both being a patient and a SP, is that empathy must be a constant practice on behalf of both patients and providers. It is an essential component to advocating for yourself as a patient. Empathy, along with strength and kindness, have the power to improve our entire health system.

You can read more about Tannaz’s take on the issue of communication in the healthcare system here.