Everyone worries about how much sick and vacation time they get each year – after all, what happens if you suddenly catch a flu or want to take a flight out of town for a few days of R&R?
For a minority of people, sick days and vacation days are one and the same thanks to their chronic illness. And, for women who are navigating their professional lives and a chronic illness, things can get a little complicated.
I’ll come out and say it: I have a chronic stomach condition. The kind that makes other people uncomfortable when I discuss the details. And, because I look able-bodied, it’s also the kind of condition that can create a lot of suspicion and second-guessing within the workplace.
For people who are differently-abled, our careers are marked by a constant balancing act of taking care of our health, living with pain and random flare-ups, and simultaneously trying to fly under the radar at work.
It’s exhausting – but there are a few things that women can do to stay vocal, raise awareness, and advocate for equal treatment within the workplace if they are living with a chronic illness.
Modern Workplaces, the ADA, and Working with a Chronic Illness
Time and time again, I have heard about the problems that can arise for those who are living, and maintaining a professional life, with a chronic illness.
In the past, I was let go from a position because they “needed someone who wasn’t sick so often.” Despite having a position that was completely based online, where I maintained my schedule and outputs, my illness was weaponized and could have ended my career. Later, my previous managers openly repeated their reasoning during a company-wide meeting that afternoon – despite the fact that the Americans with Disabilities Act specifically outlines that workers cannot be terminated for health-related reasons as long as they maintain their responsibilities.
Worse yet, I was directly told:
“Your illness will hold you back – if you can’t get better.”
This situation, to be frank, sucked – a lot. Every single person with a chronic illness can attest that prejudice and judgment play a big role in job termination resulting from the accommodations that you require.
The EEOC and ADA were set up to support people living with disabilities and prevent employers from unjustly terminating employees in 1990 and 1965, respectively. But that doesn’t mean a support system is ready and waiting to help professionals with chronic diseases; my own case against my employers still hasn’t been reviewed three years later.
Whether or not you pursue, or have access to, legal representation, the fact remains that people with chronic illnesses need a good support system, an understanding workplace, and a plan for how to make things work.
Honesty is the Best Policy: How to Advocate for Yourself
It isn’t fair that people with chronic illnesses need to make additional accommodations for the comfort of other people. However, practically speaking, it’s essential to take extra steps to justify your accommodations, like working from home. Despite it all, it’s possible to advocate for yourself and set up reasonable expectations while not downplaying your illness.
Since my illness surfaced when I was young, I’ve gone through the entire spectrum of how to approach social situations, like school and work, to seem as “normal” as possible. At school, downplaying my condition was the name of the game. However, once I started working, I tried to allude to my “stomach problem” and pretend I wasn’t living with pain day-in and day-out. If I had a flare and was stuck in the bathroom for 20+ minutes, I blamed it on last night’s takeout.
It took me a long time to realize that my accommodations were under suspicion. It wasn’t until a friend who co-managed my position mentioned that my direct supervisor would laugh and roll their eyes at my “Nancy excuses.”
So what did I learn?
Honesty is the best policy. Blunt. Honesty.
Everyone has different comfort levels with how openly they discuss their struggles and needs. Because I appear able-bodied and often do have normal energy-levels, it can be difficult for people to believe that I have an illness that comes with unpredictable flares that require me to work from home. That’s where self-advocating comes into play.
When you are going through the interview process, be honest. Mention that you have a medical condition that requires whatever accommodations work best for you. Reiterate it again and provide medical documentation prior to officially putting in your notice at your previous job.
If you’re having a rough day, say something. I’m not talking about a ten-minute rant about your health, but it’s helpful to say something that can help people understand and, hopefully, empathize. It’s not uncommon for coworkers to ask each other how they’re doing — so take that opportunity to be honest.
Not only will coworkers begin to understand your condition, they may also become more aware about the toll that invisible illnesses can take on a person. Sure, maybe I had a flare early in the morning and still came into work – but I can still laugh when someone makes a joke.
The more honesty you promote in your workspace, the better. Now, some people still may not understand, or they may try to truth police you (more on that below). The goal of the honesty policy is to educate people and advocate for yourself, not necessarily to change them.
Document Everything You Can
One of the biggest lessons I’ve learned as a woman working in the marketing industry with a chronic illness is that documentation is king.
When I handed my medical documentation to the employer I previously mentioned, I saw her immediately throw it into the trash. What I should have done was send over an email with a scanned copy and asked for confirmation that it was received. Instead, I felt too uncomfortable to document the situation.
Whether you need the day to work from home, or want to meet one-on-one with your managers to discuss the accommodations you need: document it!
Following a meeting where your illness or work outputs are discussed, send over a follow-up email to thank them for their time and understanding — while also outlining what was discussed.
While you’re completing projects, whether you’re at home or in the office, make sure to document the time you took to complete the work. Similarly, any time you must work from home or otherwise use your special accommodations, be sure to document when this happened so you can ultimately prove that you maintained your responsibilities even on those days.
With the right process in place, you can make sure that you can successfully defend your professionalism, even if it is called into question because of your illness.
Fighting the Truth Police
Introduced to me by a writer friend who is battling Crohn’s disease while trying to rebuild her career from a hospital bed, the ‘truth police’ are something every professional woman will have to deal with at some point. If you also happen to have a chronic illness, you may find yourself dealing with these police more often than not.
These are the people within your workplace who are actively trying to find a gap in your story. The ones who think that your outward appearance doesn’t match up to their idea of a chronically ill person. They’ll be watching what you get for lunch and asking, “Isn’t that supposed to be something your stomach can’t handle?” They’ll be the ones who see a smiling selfie on your social media and take that as evidence that you aren’t really sick. Even if they’re aware of your circumstances, they’ll angle your work-from-home days as a vacation or PTO to make it seem like you’re simply playing hooky.
Ultimately, the truth police can call your professionalism, accommodations, and illness into question.
Whether this is done through public comments during meetings, or privately with a manager, it can be difficult to fight the seeds of doubt they plant.
In the face of accusations or snide comments, speak up. I, like many other women in the workplace, feel a wave of discomfort when it comes to being direct. However, when you are living with an illness, it’s important to advocate for the realness and seriousness of what’s going on.
As a professional woman, it’s key to remember that you should have the professional autonomy to work and thrive even with a chronic illness. Be open and honest with your condition and needs – you may just find that other strong women coworkers are also managing with invisible illnesses.