By Claire Sachs, CDC Ambassador
It’s the end of Chronic Disease Month, and in honor of that, I wanted to talk about how, if we have to be labeled as disabled, as many of us are, that we understand it’s not just a label. It is also a form of protection. I don’t play the disabled card often – I could have had a handicapped license plate when I first developed neuropathy 27 years ago – but it is a tool. Like all tools, it serves a purpose, and all of us should know that purpose and how to use it when we need to.
One of the organizations I work with, The Chronic Disease Coalition, recently commissioned a survey of our communities. Shocker, the data revealed that about half of those surveyed said their condition impacts their ability to work. Even more striking, 25% felt strongly that their ability to work is or has been significantly affected. Despite the presence of state and federal protection laws, 22% of respondents—nearly 30 million Americans—have experienced discrimination at work due to their medical needs. Because of this, or even just the anticipation or the stigma attached, less than 65% have disclosed their condition to their employers.
This is heartbreaking — and sheds light on the unfortunate education gap when it comes to the legal rights we have as chronic disease patients. I understand these struggles all too well, seeing as how I almost sued my Fortune 500 employer because they violated reasonable accommodation law. (Back then, I didn’t know when I would get out of that job, so I didn’t want to burn bridges in my industry.)
Those of us identified in the survey who feel our conditions’ impact on our ability to work are literally the ones equal opportunity laws were codified to protect.
Federal laws, such as the Americans with Disabilities Act (ADA) and the Family and Medical Leave Act (FMLA), provide essential protections for individuals with chronic diseases. The ADA prohibits discrimination against employees with disabilities and requires employers to provide reasonable accommodations. The FMLA allows eligible employees to take unpaid, job-protected leave for specified family and medical reasons, including managing a chronic health condition. And it all falls together under the provision of the Equal Employment Opportunity Commission (EEOC).
The federal definition of disabled is very, very broad. In 1995, after the passage of the ADA, the EEOC revised its definition to cover anyone with “a (one) physical or mental impairment that substantially limits a major life activity, has a record of such an impairment, or is regarded as having such an impairment.”
In a nutshell, there has to be some record of your condition, but it doesn’t have to be a diagnosis. People just have to know that something gets in the way of a (one) “major life activity”, which was updated at that same time to add difficulty thinking or concentrating to the more obvious impacts including, but not limited to difficulty walking, hearing, or seeing.
All you need to invoke legal protections a letter from a doctor stating that you have a condition that impacts a life activity, but that you are still capable of performing your job (with reasonable accommodation for your condition). The letter does not have to state what your condition is or what the impact is. For government jobs, there is actually a whole category for us: the Schedule A Hiring Authority.
Once you have that letter in hand for your employer, they are required to provide what you need to perform your duties, from a standing desk to a flexible schedule.
Despite all these protections, I know there is still a considerable fear of discrimination. Discrimination cases are notoriously hard to prove, so that 65% from the CDC survey who haven’t disclosed have a legitimate reason for not doing so. What if you disclose and things change despite the law? Will your employer find subtle ways to eventually herd you out the door?
But disclosure can open the door to getting you what you need to do your job, which should alleviate the enormous amount of stress keeping everything quiet can impose on you. It also educates those around you and fosters a more inclusive environment. And telling a select few, like the ones who share your workspace, can provide a safer environment if you have a medical incident. At one job, a colleague who hadn’t disclosed found themselves in the midst of a dangerous medical situation, and only got the pre-ambulance care they needed because our boss had been an Army medic.
If you ever do feel like your employer is discriminating against you, make sure you document related encounters with as much information as possible – time, date, what was said, by whom, and who was there to overhear, or even anyone you may have told afterward. If you are comfortable reporting these circumstances to your Human Resources Department, do that. If not, seek counsel from an employment attorney, or you can contact the EEOC hotline for guidance at: 1-800-669-4000, 1-800-669-6820 (TTY for Deaf/Hard of Hearing callers only), 1-844-234-5122 (ASL Video Phone for Deaf/Hard of Hearing callers only), or info@eeoc.gov.
Additionally, organizations like the Chronic Disease Coalitions and the non-profits that advocate for your condition(s) can help. They can also empower you to affect change if you want to find ways to advocate for yourself and others in similar situations. By sharing our experiences and raising awareness, we can push for stronger enforcement of existing laws and the development of new policies that better protect chronic disease patients in the workplace.
Living with a chronic disease should not limit your professional aspirations or compromise your workplace dignity. By using your legal protections as they were meant to be used, and advocating for your rights, you can better manage both your career and your health. You are not alone — there is an established community and legal framework there to support you.
For more information and resources, visit the Chronic Disease Coalition’s website and connect with our community.