Managing a chronic condition can feel like a full-time job. Navigating projects, meetings and deadlines while prioritizing doctor’s appointments and treatments can be mentally and physically exhausting.

For more than 20 years, Jessie Kohler of Santa Monica, California, balanced her job as an attorney with managing her pulmonary hypertension. Kohler was diagnosed in 2004, a year after making partner at her law firm.

Kohler initially shifted to part-time work while starting treatment. Now, she works full-time but cut her hours from 60 or 70 per week to 40. She also transitioned from being a trial attorney to managing overall operations at her firm.

When Dorothy Watts of Seattle was initially diagnosed with PH in March 2020, she grappled with what her condition meant for her life ahead.

Physically, she could continue her work as a technical product leader at Amazon. But the uncertainty of her diagnosis, combined with the isolation of the pandemic, took a toll on her mental health. Work tasks that once seemed urgent became less of a priority.

“My productivity and attention suffered, and the hardest, but most important lesson I learned was how to redefine success and productivity,” Watts said. “I had to accept that rest is not only necessary, but a critical part of maintaining my health.”

When Amazon transitioned employees back into the office, she faced new challenges — less flexibility for medical appointments, managing medications during back-to-back meetings and traveling for work events.

Watts and Kohler know how overwhelming it can be to work with a chronic illness. They share tips that have made managing PH and their job easier.

Build a routine

Through trial and error, Watts learned how to use her energy more intentionally by listening to her body.

“I had to accept my energy and fatigue levels, shortness of breath and recovery time varied day by day,” she said.

Her biggest tip is to create a routine that works with your body. For example, Watts feels better later in the day, so she schedules most meetings in the afternoon and blocks mornings for a slower start.

Kohler also optimizes her schedule. She schedules multiple appointments on “high energy” days to take advantage of her good health. On days when she feels exhausted or her PH symptoms worsen, she gives herself space to recover without guilt over completing assignments.

Rest is key

Kohler and Watts recommend prioritizing recovery time.

Kohler protects her personal time by not responding to late-night emails or calls. On days off and weekends, she focuses on restful activities and time with her husband and two kids.

During the workday, Watts recharges by finding a quiet place to rest and eat during lunch or by adding short breathing and meditation breaks to reset before meetings.

Rest is key to balancing overall stress.

Set sustainable boundaries

For Kohler, the hardest boundary to set has been saying no.

“It’s so important to learn to say, ‘I can’t take on that extra task right now, but I can revisit it later,’” she said. “It protects your space to ensure you don’t overload your plate and cause your body extra stress.”

To stay organized, Kohler recommends having a detailed calendar, not just of meeting and assignment deadlines, but of doctor’s appointments and rest periods. On days she has a doctor’s appointment or treatment scheduled, she works from home to avoid commuting stress and to allow herself to recover in a comfortable environment. She also blocks off rest time on her calendar so colleagues know not to contact her.

Kohler also recommends having an out-of-office message ready for days when you feel depleted. This will make communicating with colleagues easier while limiting your stress.

Sharing your diagnosis

One of the biggest decisions Watts faced when returning to the office was whether to share her PH diagnosis.

If you’re seeking accommodations, some disclosure is often necessary. But that doesn’t mean you have to share everything. Watts said you can be general and still get the support you need.

Human Resources can be a helpful partner when it comes to understanding your rights, workplace protections and available health or disability benefits.
“Choose your people. You don’t have to tell everyone,” Watts said. “Sometimes starting with one trusted colleague or manager can make the process feel more manageable.”

To ease anxiety, she recommends writing a short statement when sharing your condition with others.

“I would say something like: ‘I have a rare lung condition that affects my breathing and energy levels. I’m managing it well, but I many need occasional flexibility.’”

To maximize her health and performance, Kohler shares all her work and career goals with her care team. She recommends asking your doctors about medications, nutrition or therapy options that may improve fatigue, daily function and your ability to achieve your goals.

Build a network

PH can feel isolating, especially around healthy coworkers. Watts and Kohler emphasize the importance of finding support.

Watts found support through her family, friends and doctors. Kohler recommends leaning on trusted coworkers or friends for moral support. Both recommend joining a local or national support group to gain practical tips and connect with others who understand life with PH.

If you prefer one-on-one support, Kohler suggests working with a therapist familiar with chronic illness to develop strategies for managing stress and staying out of survival mode.

“Working while managing a chronic illness can feel frustrating and dauting at times,” Watts said. “But the most important thing is to advocate for yourself in a way that feels safe, and to know that you’re not alone in figuring it out.”