UCSF research scientist reveals disability after decades of sleeplessness

Imagine being sleep deprived for almost 40 years.

That’s the nightmare Mindy Hebert-DeRouen lived until she received treatment for Willis Ekbom Disease, otherwise known as Primary Restless Leg Syndrome, which causes severe sleep disorder.

“My first 39 years were characterized by increasing chronic sleep deprivation and excessive daytime sleepiness which caused increasing strain on my mental and physical health,” she said. “I worked part-time for 10 years until I finally received a definitive diagnosis in 2019.”

Today, Hebert-DeRouen works as a research scientist for the Department of Epidemiology and Biostatistics and co-investigator for the Greater Bay Area Cancer Registry.

She said the hardest part about living with this disease is that people don’t understand that she will never get better.

That lack of understanding has resulted in her being turned away for care or for providers attributing her symptoms to an inability to handle stress or her workload. She also has been perceived as not having sufficient coping skills or sleep hygiene, which is not the case for the busy mother of two.

“I’m now in a phase of chronic disease management – there is no cure – and, even though I can handle a full-time work schedule, my symptoms wax and wane, so I needed to learn how to communicate my needs and the boundaries necessary to attend to my health.”

Hebert-DeRoen has disclosed that she has a disability to her manager and a few other colleagues. “I know this is important given that my disability is not apparent to others,” she said. “It’s difficult for others to understand, and even calling it a disability has been a learning process given that it is not listed by the ADA [Americans with Disabilities Act].”

Overall, Hebert-DeRoen said that UCSF has been a supportive place to work in large part due to colleagues on her team. Since starting in 2017, she has worked a hybrid schedule working from her home in Fremont. Since returning to the office she has been able to split her two in-office days between San Francisco and the cancer registry offices in Fremont. “It’s made a huge difference not having to commute as often,” she said.

Besides spending less time in transit, working from home enables her to take a nap, something she cannot do in her cubicle at Mission Hall. She was glad to find a focus room equipped with a futon where she could rest, but one day it disappeared. Hebert-DeRouen asked for a futon to return, and it eventually came back.

“There were couches in two alcoves that were not private and I was able to sleep on a chair. But that’s not ideal because when people see you there is an element of judgment that you are sleeping on the job. One day, the department chair walked past me.”

Now that she has a private office working with the cancer registry in Fremont, she can shut the door and turn off the lights.

Hebert-DeRouen hopes telling her story will help UCSF to continue to foster a culture of belonging and so that others appreciate the importance of work-life balance.

It has taken some time to learn how to advocate for herself on account of her disability, but Hebert-DeRouen is able to set and hold her own boundaries. And it helps that she can finally sleep three to six solid hours a night. “It’s easy to feel like I must be on and engaged all the time. My experience is about committing to a healthy balance that protects my well-being.”