Yikes! Today we are tackling the age-old question that healthy folks have never had to contemplate. Should you tell your boss about your disability? It would be great if this question came with a simple answer, but like all things chronic illness, it is COMPLICATED. Both disclosing and not disclosing can have consequences. Let's walk through the pros and cons of both.
Alright, disclaimer time! This is solely my opinion based on my own personal experience. This is not medical or legal advice, and I am not to be held responsible for the content or how you use it. Talk to a professional!
Now that that's out of the way, back to the good stuff. I have always disclosed my disabilities mainly because I can't keep my mouth shut for more than 5 minutes and my diagnoses tend to be my go-to fun facts. Typically, I do not disclose in a formal way and only after I have been hired for a position (this has always felt like the safest option to avoid blatant discrimination with no proof during the hiring process). Instead, I disclose when a situation comes up where I need an accommodation or my experience with chronic illness offers a valuable perspective. Often, I am more comfortable discussing my lupus rather than my narcolepsy with my coworkers and managers because there is less of a stigma associated with it. People doubt my abilities when narcolepsy is initially brought up. I like to surprise people with the narcolepsy disclosure after establishing my awesomeness and competence.
Here are two examples of when I have disclosed and how it has been helpful.
Early on in my new job: "Hi (insert manager's name here)! I have lupus which requires me to have a more flexible schedule due to doctor's appointments and my weakened immune system. Just wanted to give you a heads up. I am a really good communicator and will give you as much notice as possible."
This approach worked well as I was assertive but reassuring about my abilities.
Giving this information before needing accommodation caused less stress.
When I flared and needed to leave work urgently or call in sick last minute she was more understanding.
I made a point to communicate when I was in a flare or when my health was doing great. Again, this gave some insight before I needed accomadating. They tended to be more understanding when issues arose.
When I needed accommodation: "Hi, I am not sure if I have shared this with you or not but I have narcolepsy and I am really struggling with sitting in this quiet alcove facing the wall by myself. I am afraid I will accidentally fall asleep."
In this situation, a co-worker had complained that I wasn't sitting where I was supposed to and my manager approached me about it.
Not only did my explanation provide reasoning for what I was doing, but my awesome manager went above and beyond by ordering me a rolling desk so that I could stand or sit in a more populated part of the office.
Under different circumstances working for someone else, without disclosing my disability this could have resulted in being written up. Don't forget the ADA protects you!
Disclosing my disabilities hasn't always been sunshine and roses though. It has resulted in some major discrimination in my academic career. While interviewing for a competitive health program in high school I shared my diagnosis with the interviewer explaining why I had such a passion for the program and a future in health care. I did not get into the program despite over 100 hours volunteering in our hospital, a high GPA, and previous leadership roles. When I asked why I didn't get accepted, I was told that due to my conditions I would likely miss too much of the program. S
imilar circumstances occurred in middle school and grade school due to my health conditions.
I have had positive experiences disclosing my conditions with employers, but I also have worked for some really amazing employers. When searching for a job, I think it's crucial to feel out the vibes of the organization. Find a culture of accommodation and inclusion. Most importantly know your worth and stand up for yourself. As you begin searching for a job take some time to reflect. Identify your strengths and ways you bring value to a company (this helps your confidence and helps you feel less guilty when asking for accommodation), reflect on your values and what you are looking for in a company or job, and of course identify your green, yellow, and red flags (helps you stay 'woke' during the process and anxiety). Whether you choose to disclose or not disclose it's important to remember that the choice is yours and you have rights!
Check out the reflection guide I made to help you brainstorm!