Navigating Neuropathy: Caro Reyes Shares Story to Spur Respectful Conversations

This story is part of a series to raise the visibility of people living with a disability at UCSF and to share resources available at UCSF to serve and support this community. Join us as we share their stories.

Coming out has been a big part of Caro Reyes’s life but disclosing that she has a disability is different.

“I’ve come out so many times as a queer person to my parents, my family, my friends and my workplace,” says Reyes, who designed and was featured in a “Faces of Pride” campaign while on staff at the UC Office of the President. “But I’ve always had trouble coming out with my disability.”

That discomfort is understandable given that her permanent disability changed her life 15 years ago. Reyes, a project coordinator in the Office of Communications, has been managing chronic neuropathy, musculoskeletal pain and mobility issues ever since.

“I think anyone can relate to how hard it is to make a lifestyle change whether that’s to change your body, diet or habits. With my chronic condition, it’s important for me to try out different regimens, but it requires a huge investment of time and courage to try out new research, interventions and providers that may not make an impact.”

Since getting her disability diagnosis, the most surprising adjustment has been managing microaggressions and prejudice. “Since I was 4 years old, I’ve experienced in so many ways how people can think differently of me because my intersectional identities disrupt a variety of biases. And then having a permanent disability turned it into a whole other ballgame.”

“My disability, like all my other identities, is not immediately obvious. When people find out about it, they crave salacious details and ask a lot of questions about the past. But what they don’t realize is I’m not a one-way newsfeed, these lived experiences are mine, and this line of questioning gets dehumanizing.”

Reyes decided to share her experiences to help others better understand ways to talk with people with disabilities. “I felt like it was time,” she says. “I want to own and share my story to break down more stigmas and biases and try to provide guidance on how we can better communicate and connect with one another.”

Her advice for communicating with someone with a disability is to practice what she calls “respectful curiosity.”

“One of the most important things that I have found is that practicing respectful curiosity can unearth biases and lead to insights that can create a beautiful rippling affect that can benefit everyone. It takes a lot of practice to shift the habit from feeding the desire to know ‘a story’ to learning how to connect with a person and an experience that is very different from your own. Try to pause and ask people, ‘Would it be okay to talk to you about this?”

In addition to navigating difficult conversations, Reyes says her biggest challenge is managing her neuropathy. “It really does take a lot of planning and management. With neuropathy, stress can turn into an unexpected physically painful flare up. Holistic stress management is very important because no stress is worth that level of pain.”

The ability to work remotely makes it easier to manage her neuropathy. She appreciates that UCSF has adopted a hybrid work environment and that her team has accommodated her requests for equipment to enable her to work comfortably and productively at home and in the office where all “hoteling” stations are equipped with sit-stand desks.

Looking toward the future, Reyes has high expectations for UCSF – as a leading health sciences university – as it continues to foster an environment that is inclusive and respectful of all. “All people benefit when we set up work environments in ways that support people with disabilities.”