Learning from Others Who Live with MG

For both Tommy* and Julia,* the decisions they made when choosing careers and employers were very much influenced by living with myasthenia gravis.

Tommy was diagnosed with MG when he was 12 years old. As a kid who was involved in school sports, his dream was to be a star athlete, until his MG symptoms no longer allowed him to run up and down the basketball court. As he got older and it came time to decide on a career path, Tommy had to compromise. “If I couldn’t play sports, I was going to write about sports. So, I chose a path in sports journalism,” he said.

Julia was in college, heading down the path of becoming an occupational therapist, when she was diagnosed with myasthenia gravis in 2011. Because of her symptoms, primarily fatigue, she decided to narrow her focus to hand therapy. "I had to rethink my plans and make sure they would still be achievable with this disease,” Julia recalled. “I’ve always had a lot of quad weakness, so some areas of occupational therapy wouldn’t have been a good match for me.”

Building a Career with MG

Things you may want to consider before applying for a job

If you’re considering taking on a role with a new company, here are some questions you may want to consider before applying:

• Would there be an option to work from home?
• If not, what would your commute look like?
• Would you need any additional education or training?
• Is there any heavy lifting or physical labor that may be difficult with your MG symptoms?
• Do you think you’d be passionate about this job and love doing it?

Considerations while preparing for a job interview

During interviews, Julia has a strategy for what to ask. “I always ask what my schedule would be and if there’s dedicated break time,” she said.

In addition, the questions below may help provide clarity as to whether you’d be happy in the role. It’s possible to ask these with or without sharing that you live with MG.

• Does the health insurance the company offers support your MG treatment and current physicians?
• If fatigue is common for you, are flexible work hours an option so you can make time to rest?
• What does a typical day in this position look like?

Choosing whether to disclose to a potential employer that you live with MG is a personal choice. If you decide to share this information, think about how you would do so and consider these points:

• How much speaking and/or reading would you need to do?
• Are there many repetitive and/or strenuous tasks that may aggravate your symptoms?
• During the interview itself, how can you emphasize to a potential employer what you can do versus what may be difficult for you?
• If you have gaps in your work history because of MG, think about how you want to address that and know that it’s okay to be honest.
• What accommodations would you need to work efficiently? Think about things like screen-reading software, lighting, etc.

Tommy feels that it’s important for people living with MG to focus on their strengths rather than weaknesses when it comes time for an interview. “Yes, I have this disease, but I am the most resilient employee you are ever going to have because I have this disease,” he said. Living with MG has taught him to overcome pressure and limitations, so that’s the message he tries to share when meeting with potential employers.

How to Communicate About MG While Maintaining a Career

Though he felt differently when he first started job hunting as a young adult right out of college, Tommy now uses workplace relationships as an opportunity to spread MG awareness and educate others. “When I had my very first job interview out of college, I didn’t disclose that I had MG. I was afraid of how people would react. But I’ve learned a lot since then, and in more recent interviews, I absolutely shared that I live with MG,” Tommy said.

Julia agrees with Tommy that disclosing an MG diagnosis may be useful so coworkers can understand what she’s going through. “If I’m having a lot of weakness, I ask if they can help me, but if you don’t have those conversations about MG, then you don’t give your coworkers an opportunity to help.”

Effective communication may be helpful when it comes to managing expectations in the workplace. If you decide to let your boss and coworkers know that you live with MG, here are some considerations:

• Can you use this opportunity to educate others about MG? You may use this guide to help explain MG in an understandable way. 
• How can you effectively explain your limitations?

Resources for Additional Support

MG in the workplace may be a tricky topic to navigate but there are organizations and policies that can provide additional support, including the Job Accommodation Network, Americans with Disabilities Act and the Office of Disability Employment Policy. Learn more about each of these below.

• Job Accommodation Network (JAN)

  This network is a free consulting service that provides information about job accommodations, the Americans with Disabilities Act and the employability of people with disabilities. It even has a list of potential MG-specific workplace accommodations.

• Americans with Disabilities Act (ADA)

  This is a federal civil rights law that says people with disabilities cannot be discriminated against in everyday activities. If you have technical questions surrounding this act, confidential calls can be made to ADA specialists at 800-514-0301.

• Office of Disability Employment Policy

  This agency is part of the U.S. Department of Labor and provides support to increase employment opportunities for people living with disabilities. It strives to develop and influence policies to support this initiative.

As you navigate evolving myasthenia gravis symptoms, your career plans may need to evolve too. Like Tommy and Julia, you can try to find a way to adapt your interests to fit roles within your abilities and strengths.