Patient Worthy was a media partner at this year’s NORD Living Rare, Living Stronger Patient and Family Forum. This is an annual event hosted by the National Organization for Rare Disorders (NORD) that centers on the rare disease patient experience and features a variety of speakers, patient stories, and educational sessions that are designed to help the rare disease community.
This year’s event was entirely virtual in light of the ongoing COVID-19 pandemic. We had the opportunity to attend several of the info sessions at the forum. One of the ones that we checked out was titled “Working While Rare.” The session focused on what it means to maintain a career while living with a chronic or rare disease.
Not all rare disease patients will be able to have careers due to the varying degrees of disability that the illness may cause. However, there are many patients that are still able to provide for themselves and find success in the workplace.
Speakers for this session included:
- Lisa Massey, Program Specialist, Member Education & Engagement, Value Based Care Models, Health Care Affairs, Association of Medical Colleges
- Brett Chinn, Founder, Brett Chinn Coaching & Consulting
- Ellyn Goodrich, Teacher
Brett and Ellyn are both rare patients, being diagnosed with Ehlers-Danlos syndrome and cholangiocarcinoma respectively. Outside of her career as a teacher, Ellyn also volunteers as a patient advocate for the Cholangiocarcinoma Foundation.
Finding work can be a challenge for anyone, but it’s even tougher for people living with rare disease. One big question for patients is simply how to address the subject of their diagnosis or disability, such as whether it’s more appropriate to mention it before or after an offer, for example.
Brett says that it can depend on the circumstances, but in most cases it can be a good idea to disclose during the application process so that you can receive legal protections. However, this doesn’t necessarily mean that it needs to be discussed during an interview.
Ellyn was not able to disclose because she was diagnosed two months after accepting her current position. She has relied on the generosity of fellow teachers to have the sick days that she needs while not losing pay.
Brett is very clear that being as transparent as possible can be essential for a healthy and successful relationship with your career and employer. Be explicit about your capabilities and don’t be afraid to say no to something if you know it’s not within your ability, while also clearly explaining why as much as you can.
Rare disease patients may also need to take time off for regular appointments or treatments, and this should also be discussed openly with coworkers and employers. This is easier said than done and it can make patients feel as if they are not contributing as much as they should; Ellyn, for example has struggled with this as she has needed to take time off for chemotherapy.
Many patients may need extra accommodations at work and this is another conversation that requires directness and transparency. If an employer isn’t willing to meet these needs, then it may be a sign to search for work elsewhere. The pandemic has also demonstrated that many office jobs can be done successfully from home, which would make things easier for many rare disease patients.
Often many of the practices and considerations can come down to one of the most important skills that rare disease patients must learn to be able to live the best lives they can and get access to the treatment they need: self-advocacy. This means being willing to ask for help and resources assertively.
“Something I would tell my younger self is that when you ask for help, do so with conviction.” – Brett
