To Disclose or Not to Disclose?
“You have a brilliant mind,” my professor whispered.
Her words tore through the soft tissue of my chest. I felt like a kite whose string had been cut. The agony of being told that I was unable to pursue a Ph.D. program due to the severity of my narcolepsy symptoms knocked the breath from me.
I miss the life I had before narcolepsy
The words were intended to be a mercy, a balm to soothe my wounds. However, knowing my potential and still being barred from my dream just made the pain more exquisite. I still remember this phrase, like it was spoken yesterday. It has been over a year since I’ve set foot on University grounds after spending 5 years of my life there. I miss the work I was doing there. I also miss the abilities I had before my narcolepsy symptoms onset.
Many people who suffer from narcolepsy find that it interferes with their ability to work. Narcolepsy is a neurological disorder. Symptoms can be reduced with medication and other strategies. However, these symptoms will still be experienced at varying degrees. Many people with narcolepsy find that it can be helpful to receive accommodations from their employers.
What is the Americans with Disabilities Act?
The Americans with Disabilities Act “requires employers to provide reasonable accommodations for all employees with disabilities.” The Americans with Disabilities Act states that a disability is a condition that limits one or more life activities.1
These laws are in place to protect people with disabilities from workplace discrimination in the US. However, many people with disabilities still face various forms of discrimination in the workplace.
Discrimination in the workplace complaints
According to the Washington Post, more than 1 million employment discrimination complaints have been filed with the US federal government since 2010. Only 21 percent of these cases received relief, either in the form of better workplace accommodations or monetary compensation.2
Less than 2 percent of total cases were determined by agencies to have had discrimination occur, and the workers in half of those cases did not receive relief of any kind.2
In other words, federal laws prohibiting employment discrimination of disabled individuals rarely favor the very people they are intended to protect.
What does this mean for people with narcolepsy?
It is for reasons such as these, and various others, that people with narcolepsy may struggle to decide whether to disclose their disability to their employers. They might question themselves about when the right time would be to tell their employer, if at all. Fortunately, there are federal laws in place that protect this right. As such, it is completely up to the worker to decide.
What to know about job interviews
It is important to note that employers can indeed question an interviewee about their ability to complete their essential job duties. Essential duties are commonly listed in the job description. It may be beneficial to review these duties before participating in an interview. Doing so could help a person with narcolepsy brainstorm on the type of accommodations that would serve them best.
Employers cannot ask questions about a worker’s medical history or disability status during a job interview. Additionally, employers cannot require a medical physical until after a job offer is extended.3
While knowing your rights as a disabled worker may protect you to some degree, it is not a guarantee that you will never experience workplace disability discrimination. Workplace disability discrimination can happen to anyone with a disability.
Healing from discrimination experiences
I know many people with narcolepsy who have experienced workplace discrimination due to their condition. One of the hardest parts of healing from these experiences is the sense of deep shame that they can induce.
If you have experienced discrimination of any kind due to your disability, it is important to remember it is not your fault. The shame you feel is not yours to carry. It belongs upon the shoulders of those that discriminate and the justice system that does little to protect victims of discrimination. It may help to open up about these experiences with a trusted friend, family member, or therapist.
People with narcolepsy can benefit from disclosing their condition by receiving accommodations from their employer. If you are interested in learning about workplace accommodations commonly made for people with narcolepsy, stay tuned for an upcoming article!
Where are you in your narcolepsy diagnosis journey?