Disclosure in the Workplace

When it comes to your rare disease, have you ever struggled in the workplace over who to tell anything to? I have, and still do.

Perhaps it's not necessary, but in past job interviews, when the interview was going well, and I could tell I was being offered the job, I gently let my potential new employer know that I have a health condition. One that doesn't prevent me from effectively completing the job responsibilities but would require taking time for medical appointments.

I wish I remembered exactly how I made this disclaimer so tactfully that it wasn't alarming to potential employers, but sadly, I do not.

We all deserve a supportive employer

However, it worked. And now that I am more comfortable with who I am as a rare disease patient, I can confidently say that if a potential employer wasn't accepting of me as an employee with a health condition, I would not want to work for that employer – especially not for a long period of time.

I want and deserve a supportive employer who wants me to thrive in my job and career. Every employee does.

An internal debate about divulging personal information

Because I've worked with my coworkers for such a long period of time, they've come to know a fair share about my health conditions, and it hasn't been an issue.

However, it's understandable to have the internal debate of who I can tell what to and who I should not say anything to. Yes, there have been individuals I mistakenly confided in under the guise of a friendship. And there have been others I carefully minded what I divulged. But even in these cases, I've been fortunate that my health conditions haven't been of concern.

Connection and support in numbers

My employer has a group of employees with chronic illness that meets regularly to share stories, workplace tips, and resources, and they are available to support one another. Even though this group is promoted throughout the company and is wholly comprised of employees with chronic illnesses, I debated about joining the group.

At the beginning of this group's development and rollout, I worried that by joining and especially actively participating, I would place unwanted attention on myself. However, I took the plunge, and not only did I join, but when there was an ask for speakers on a specific topic that was highly relevant to me, I volunteered and consented to a recording of my talk.

Taking a leap of faith, but keeping myself prepared

I share this because it's important to recognize that while some employers may need to know some details about your health conditions to allow for appropriate accommodations and support in the workplace, it's also important to be mindful of what we share and with whom.

I've found it helps to prepare myself for how I want to handle possible situations or interactions that may arise or involve my health conditions in the workplace. Sometimes, I dare say a lot of the time, our imagined worst-case scenario isn't typically what will happen and taking that leap of faith with that potential employer, that coworker, or that group can lead to greater things.

Disclosure on your terms

Ultimately, though, disclosure remains up to each person; there is no right or wrong answer. It's simply what is comfortable to you and when, if ever.

What experiences have you had with employers as someone with a chronic illness or rare disease? What questions do you have for others in our community?