Meet Amy—a 27 year old adult with cystic fibrosis. She is just one of many adults with who has answered the call to the work force. A full time architectural designer, she enjoys the challenge of using her computer skills to create architectural drawing to be included with construction permits. “I love my job,” she says. Rendering, which is creating color drawing by hand “is my absolute favorite thing.”
Like other adults who have to find a way to combine their creative passions and pursuits with the ever-present need to maintain good health. Amy’s work ethic and how she manages her workload stems largely from the skills she has utilized for managing life with cystic fibrosis. “With CF you must be very diligent and pay attention to the details” she explains. She recognizes that this is important not only for keeping on top of her health, but “with my job as well.”
Initially Amy was concerned about how to inform her employer about her disability. To her relief, she found her employer to be very accommodating to her needs as a CF patient. Her schedule isn’t very physically demanding, but the projects that land on her desk often have sensitive deadlines that must be met. Nonetheless, “I’ve not had any problems with taking time off,” she explains. “We can come and go” for necessary doctor appointments. Her employer only requests that she adjust her schedule to make up any time missed for such things.
Some cystic fibrosis patients worry about their job security, especially if they must be hospitalized for a lengthy period. Time spent away from the office while on sick leave or disability cause a lot of worry and anxiety. Fortunately for Amy, her employer and her coworkers were supportive when she hit a rough patch with her health during the winter.
“I became sick and needed to go inpatient. I told my employer then [that I have cystic fibrosis]. They were very supportive and when I went back in less than 2 months later there were no issues [about job security].”
What does the future hold for Amy? She admits that her health isn’t as strong as she’d like it to be. When asked about how hard she plans to work in the future, she candidly shares “I am considering going part time this year.” She is hopeful that her health will improve once she takes a lighter schedule at work, and that she can work awhile longer before needing to leave work permanently.
Amy sets a positive example for younger patients who may be struggling with their disease. She keeps from focusing too much on herself by doing things to reach out to other members of the community who have chronic conditions. For example, she recently donated her beautiful, long hair to “Locks of Love” a charity that uses donated hair to make lovely wigs for cancer patients who have lot their hair from chemotherapy.Her advice for others who may be interested in working in the field of architectural design? "Take some drafting classes and design classes at a local community college." She also recommends looking through design books, and encourages future architectural designers to "be prepared to work very hard in school."