It's my secret: Disclosing neurodiversity and invisible illness at work

By Roxanne Bellamy, The Diversity Movement

Business leaders should remember that an inclusive culture respects andembraces all people, abilities, identities, and perspectives — including onesthat are not visible.

Although there is no standardized definition, neurodiversity generally refers to the full range of natural variations in human brain functions, especially around learning, thinking or processing information. Autism is perhaps the most frequently cited example of neurodiversity, but the term also encompasses Asperger’s, dyslexia, ADHD/ADD, dysgraphia, dyscalculia and more. Since many forms of neurodiversity go undiagnosed, there is no single statistic regarding the number of American workers who are neurodiverse. Still, experts indicate these conditions might apply to 12-17% of people.

On the other hand, an invisible illness is any medical condition that impacts a person’s life but is not immediately apparent to others. This includes chronic or recurrent conditions like sickle cell disease, diabetes, depression, arthritis, cancer, infertility, sleep disorders, Crohn’s disease, epilepsy and more. About 10% of Americans have a non-visible medical condition that qualifies as an invisible disability (meaning that their illness significantly impacts their life). Yet, these conditions are often belittled, ignored or trivialized in the absence of visible evidence.

There is no clear division between invisible illness and neurodiversity, and many times, these two categories will overlap, especially when considering mental health conditions like anxiety or depression. What neurodiversity and invisible illness have in common is that they are both non-visible and often kept secret for fear of stigmatization, misjudgment or discrimination. To hear the personal side of this topic, we asked our partners, friends, and The Diversity Movement colleagues these two questions:

1. Do you share your condition openly with your employer? If so, have you always felt comfortable disclosing?

2. What advice would you give to employers to help them support you?

Here's what they said:

Phil Anthony: “I don’t share my diagnosis with employers because in my mind, I shouldn’t make it a concern, since I haven’t let it affect my work responsibilities during my professional career. I do share the fact with friends and coworkers outside of work hours, because I see the Inspire commercials that show happy sleepers. Then, I explain and show people the implant in my chest that has internal wires connecting to my ribcage and tongue muscle and that, in my case, actually prevented me from sleeping soundly. I haven’t turned it on in years and need to have another surgery to take it out.”

Paul Silver: “I do not feel comfortable letting my employer know about my disability until after two weeks of being hired by a company. However, my resume does say that I have volunteered my time with Autism Support Groups. The advice I would give to employers is to know that people with disabilities will be an asset to your company and not a liability. I have worked for companies where I felt like an asset, and I have worked for companies where I felt like a liability.”

Jackie Ferguson: “In my 25-year professional career, I have never shared that I have dyslexia with any employer because of a fear of being put in the disability box or viewed as less than capable, when in fact, my dyslexia creates a way of non-linear thinking that is an asset. As advice to employers, I would say: speak openly about the advantages of dyslexic thinking in the workplace when it comes to problem-solving and innovation. Make inclusion education a part of your overall strategy for organizational success.”

Mike DeMauro: “I never shared it with my teachers because I wasn’t diagnosed until midway through my college education. I do share it when I’m comfortable or if there is some reason I need to share about it. I say it in my job interviews and on the job because I feel that they need to know. I sometimes think that it could backfire and that they could use the information to take advantage of me. I think that if employers would understand me more, then we could work together to get the job done. There are also going to be good days and bad days, and I know that they might not understand ...why I might have a meltdown and go outside to cry. They might not see that when I am under a lot of pressure and can’t deal with it anymore. They might not get why I do things a certain way even though the job gets done correctly.”

Susie Silver: “I generally have shared my invisible illness (autoimmune disease) with my employer and team. I was very sick for many months before ever receiving a diagnosis and it was hard to explain what was going on, but I have the feeling that people truly believed I was sick. The discomfort of disclosing my illness is that I usually look fine on the outside, and it is hard for many people to rationalize that. My advice to employers is to get to know your team and ask what support people need. Ask about the illness or condition in a genuine way to become more empathetic and compassionate.”

A workplace environment that emphasizes neurodiversity as an asset to the team, shows empathy and awareness about invisible illness, and incorporates both inclusive language and best practices for disability inclusion can help employees feel safe and comfortable disclosing their conditions or diagnoses and requesting the accommodations they need.

Roxanne Bellamy is a Certified Diversity Executive and Managing Editor at The Diversity Movement. She has a bachelor’s degree in English and linguistics from UNC- Chapel Hill and a master’s of philosophy from Cambridge University in England.