Clients and other spoonies I meet frequently ask, “how much should I say about my chronic illness at work?” I always say, be as open as you’re willing to be without sharing the juicy details or your bathroom visits and doctor's’ appointments. That said, being open about your health challenges, even just a little, can bring up a lot of what-ifs.  What if I lose my job? What if people don’t understand and give me unsolicited advice I don’t want to hear? What if my boss and coworkers look down on me or stop giving me meaningful work? What if people think that it’s all in my head because I look fine?

Experiencing worry about these things is totally normal. It is true that sometimes people don’t get it and sometimes workplace discrimination occurs. But, being willing to be courageous and open up about your challenges can have huge upsides. I’ve helped a ton of my clients overcome the fear and reap the benefits of being open.

Based on my experience and those of my clients, here are just some of the possible effects of being open about your health challenges. Being open can help you:  

  • Be more honest with yourself about how you’re feeling and what you can and can’t do.
  • Get accommodations so you can work, or keep working with a new sense of ease.
  • Connect with others who have your same challenge(s) and can help you find doctors, support groups, etc.
  • Be yourself so it doesn’t feel like you’re hiding or wearing a mask all day.
  • Save energy because you’re not always pretending or worrying that people will learn your secret, or trying to do things that are really hard for you physically.
  • Ask for and receive support from people who love you and want to make your life easier.
  • Build more meaningful relationships because you’re being vulnerable and courageous and people feel comfortable being those things in your presence.

Not too shabby, eh? If all that sounds good and you’re still scared to be open at work, know that that is normal and consider that, while it’s possible to get a bad response, it’s also just as possible that your employer could be understanding, supportive, and accommodating. And would it be okay with you to work in any other kind of environment?  Think about how much of your time you spend working. If you do not feel safe and supported at work, it can have a huge impact on your physical and mental health. Toxic and unsatisfying work environments can even be the cause of chronic health conditions. Still, people frequently stay in positions that don’t work for them out of fear of losing health insurance, income, etc.  This pattern is so prevalent that another chronic illness coach named Rosalind Joffe specializes in helping folks get out of toxic work environments.  It can be scary to jump ship but it can also be an extremely effective step in regaining your health.

So what does being open about your health challenges at work really entail? It’s entirely up to you. You get to decide how much you want to share and when you want to share it. By law, you don’t have to disclose anything, but even saying that you have something, without being specific, can support you in getting accommodations that might make your work a million times more pleasant.

It might seem like a stretch at first, especially if you’re undiagnosed, but it is useful to see your health challenge(s) as a disability. Under the Americans with Disabilities Act (ADA), which protects individuals with disabilities from discrimination in their place of employment (and elsewhere), you have a disability if you have a physical or mental impairment that substantially limits one or more major life activities. More here on what constitutes a disability under ADA.

And when do you tell an employer that you have a health challenge?  When starting a new job, I’ve both been upfront about my limitations and accessibility needs in the interview, and have waited until receiving a job offer to reveal that I may need special accommodations. It has worked well for me both ways. When I was first diagnosed, I waited until I said I was leaving to tell my boss but I wish I had told her much earlier. She was incredibly supportive and has since offered me part-time positions and connected me with other employers.

If you see that you desperately want to be open with people but you’re having trouble actually doing it, you may want to hire a coach to get you over the hump. It’s totally worth it.