An invisible illness is one that you can’t see from the outside. Someone may not “look” or “seem” sick, but, in fact, every day is a struggle.
Inspired by her own myasthenia gravis journey, Michele Lee Niec began researching the experience of others with invisible illness. She eventually wrote the book A Leadership Guide to Normalizing the Discussion of Invisible Illness in the Workplace (second edition out this year).
This reference guide defines invisible disability and offers initial steps employers and employees can take to create dialogue, foster understanding, and help ensure staff members with an invisible disability are comfortable and effective at work.
In honor of Disability Employment Awareness Month, Michele shared some best practices to ensure that people with invisible illness feel seen and heard at work.
How does an invisible illness like MG impact your ability to work?
The challenge is going to be that no two myasthenics are the same. Some might not be able to stare at a monitor all day because of their double vision. Some may need a certain temperature regulation. Some, depending on how they react to their treatment, may need flexible sick time. Some may struggle to communicate effectively if their voice muscles get fatigued. Some may need a certain chair that lets them rest their arms, even if no one else has a chair with armrests.
With any chronic illness, the experience will be unique to each person, but especially so with MG – there’s a reason it’s called the snowflake disease.
What advice do you have for requesting accommodations at work?
Meet with your employer and let them know it’s ok to talk about your MG. Tell them what you need today and what you may need down the road. Accommodations can be ongoing or episodic -- who I am today and who I might be, what I might need later. Having that conversation up front makes a difference.
You have to advocate for yourself and know what’s going to work best for you. There are myasthenics in wheelchairs, and they’ll need different accommodations than I would need. Use the My MG mobile app to track your good and bad times. When you start noticing trends, you have data to back up your requests.
Legally, what are people with an invisible disability entitled to per the Americans with Disabilities Act?
The ADA exists to protect employer and employee. Your employer doesn’t have to provide accommodation that would put them in financial hardship, but they do need to provide “reasonable” accommodation. Employers also cannot discriminate in the hiring process (MG qualifies as a disability, as it’s a physical impairment for most people). Of note, the ADA applies to companies with more than 15 employees.
When you onboard, you have the option to self-disclose that you have a disability, and you will have a legal right to workplace accommodations. If you are diagnosed after you’re hired or decide that your symptoms are worse and you need support at work, you can still ask for ADA-mandated accommodation if you disclose to your employer at that time.
What advice do you have for self-advocacy in these situations?
For me, I’ve taken upon myself to be an educator for MG. I’m sure everyone’s had that experience of, “Why are you parked in the handicapped spot? You look great.” You need to become your own champion. You need to say, “I want you to know about this.” By educating, you’re not asking for sympathy, you’re asking for empathy. We could all use more empathy. Starting with that educational approach really helps open up a conversation. Be self-aware of your needs and don’t be afraid to advocate for yourself.
What can employers do to better support employees with MG?
I do think employers should be proactive. In their handbooks they can share that if you have the need, we’re here to support you. I think they have to speak as a global unit – “We as an organization believe in diversity, equity, and inclusion, and part of being inclusive and accessible is knowing that you have a place here and we want to work with you.”
Then live it – don’t just put it in the handbook and forget about it. Share stories with your employees about people going through invisible illness, then let them know, if you have challenges, my door is open. Leaders need to show they’re open to two-way conversations.
What advice do you have for coworkers who want to support their colleagues with MG?
Support them by listening and not judging. That’s the hardest part. Those who don’t disclose their invisible illness feel they’re lying, but when they do disclose, they feel judged. How do you live in that grey area between those two? As a coworker, peer, friend, you just have to ask questions, not make assumptions. “Hey, you look tired today, are you ok?” I guarantee that the person with a chronic illness will feel a weight lifted off their chest just to be asked that question.