Whether you are in the midst of your career or just starting the job hunt, young adults with bleeding disorders have the added responsibility of understanding their rights in the workplace.
Defining workplace accommodations
As part of Title I of the Americans with Disabilities Act of 1990 (ADA), all qualified individuals with a disability are entitled to reasonable accommodations. It defines these accommodations as: “any modification or adjustment to a job or the work environment that will enable a qualified applicant or employee with a disability to participate in the application process or to perform essential job functions.”
Common modifications include physical changes, such as installing a ramp or modifying a workspace or restroom, and being given time off for treatment. For people in the bleeding disorders community, appropriate accommodations may be harder to define, given the need for unique treatments that can be hard to explain or justify.
Different needs for different workplaces
Kevin Young, 22, a senior at Kent State University in Ohio, has had a breadth of work experience, ranging from office work to more physically demanding tasks.
In his senior year of high school, Young worked in the school’s administration office. “I wasn’t even thinking about hemophilia at the time I applied for the job,” he says, referring to his severe hemophilia A diagnosis. In contrast to the sedentary nature of that job, Young also worked at a gravestone restoration company and delivered pizza throughout college.
Understanding the additional stress on his joints that these manual labor jobs can have, Young diligently follows his prophylactic treatment regimen and takes breaks to rest or self-infuse. “If I start feeling pain or have reached my limit, I just take it easy and try not to do anything too strenuous,” he says.
Young’s schedule allowed him to head home and self-infuse at the onset of a bleed, but some jobs simply don’t allow for that flexibility. Michelle Finnerty, 26, from Redford, Michigan, has type III von Willebrand disease (VWD). She remembers asking for a refrigerator to store her medication at the restaurant where she worked as a waitress for several years. Her employer offered her the main refrigerator, which contained raw meat and other open ingredients. Finnerty declined the offer, refusing to have her medication stored with food for safety concerns.
Additionally, Finnerty asked not to be assigned to a section on the upper floor, which required multiple trips up and down a set of stairs. Her employer ignored her request, though. One day, after working a double shift in that section, Finnerty began experiencing back and stomach pain. Her pain became so severe that she checked herself into the emergency room, where she was hospitalized for a spontaneous stomach bleed for three days.
Finnerty realized the importance of placing her personal and medical needs first in the workplace, and she left that waitressing job. “You need to find people who understand that your bleeding disorder is a hidden disability,” says Finnerty. “Investing time in educating somebody is a lot to take on sometimes.” Because it can be unnerving to share this information at work, Finnerty advises finding one person high enough in the corporate ladder to accommodate you. “You have to have that one go-to person who has your back,” she adds.
Negotiating workplace accommodations
To be eligible for workplace accommodations under the ADA, individuals must disclose their condition or disorder to their employer. For young adults with a bleeding disorder who are starting off in the workforce—especially those who are effectively managing their condition—it can be hard to identify themselves as having a so-called “disability.”
The best way to approach the issue is by considering both your needs and your employer’s perspective. Creating a mutually beneficial relationship helps empower you and makes it easier for your employer to say “yes” to your requested workplace accommodations. Young and Finnerty emphasize the importance of seeing it as a two-way dialogue with your employer. “You want to find an employer who’s in business with you,” says Finnerty.
Having these conversations may feel awkward and uncomfortable at first, but they’re critical. Young adults with bleeding disorders need to advocate for themselves from the start of their employment. “If you approach people the right way, they will be accommodating,” Young says.