In this episode of Fine, But Not Fine, we dive into one of the biggest dilemmas for people with rare and chronic illnesses: Should you tell your employer about your diagnosis?

I share my personal experience with disclosure—why I chose to be open about my rare disease, how my work culture made that decision easier, and the benefits and challenges I faced. But this decision isn’t one-size-fits-all. We explore the pros and cons of disclosure, from gaining workplace accommodations and reducing stress to the risks of stigma and privacy concerns.

Should You Disclose Your Rare Disease at Work – Ep. 3 – The Fine, But Not Fine Podcast

In this episode of Fine, But Not Fine, we dive into one of the biggest dilemmas for people with rare and chronic illnesses: Should you tell your employer about your diagnosis?   I share my personal experience with disclosure—why I chose to be open about my rare disease, how my work culture made that decision easier, and the benefits and challenges I faced. But this decision isn’t one-size-fits-all. We explore the pros and cons of disclosure, from gaining workplace accommodations and reducing stress to the risks of stigma and privacy concerns.

Transcript

You look fine, but you’re not fine, and that’s exactly what we’re here to talk about. Welcome to Fine, But Not Fine, the podcast about navigating rare disease healthcare battles and the messy reality of chronic illness.

I’m Kelly Paul, and I’ve been living with Mycosis Fungoides since 2015. This is a space for real talk, real experiences, and practical advice. Because surviving is one thing, but figuring out how to actually live, that’s the hard part.

Hey everyone, and welcome back to Fine, But Not Fine. Today we’re talking about one of the biggest questions people with chronic or rare diseases face, should you tell your employer about your diagnosis? It’s a tough decision, and I’m telling you, there is no one size fits all answer.

Some people feel much safer keeping it private because they’re worried about how it might impact their career. Others like me choose to be really, really open about it, either because they have to, because they may need time off for treatment, or because they work in a culture that makes disclosure feel safe. I would also like to throw in that another possibility here is they don’t have to be concerned about losing their job.

My Personal Experience with Disclosing my Rare Disease at Work

Now in this episode, I’m going to share my experience with disclosing my rare disease at work, why I did it, and what factors you might want to consider when making this decision for yourself.

Now, why I chose to disclose my disease at work, for me, disclosure wasn’t something I had to wrestle with too much because honestly, I really didn’t have a choice. At one point in my treatment, I had to go to the doctor’s office three times a week at inconsistent hours for Narrow Band UVB light therapy. So it wasn’t exactly something I could hide. My schedule alone made it clear that something was going on.

But beyond the logistics, I was also really, really lucky. I worked someplace where I had a trusting leader, and the culture was one where people supported each other through whatever life threw at them. It wasn’t just about my rare disease, it was about the kind of place where if someone was going through something hard, people rallied around them, and that made it easier for me to be open about my diagnosis.

I did not have to fear being treated differently or being seen as less capable because of my diagnosis. I knew my work spoke for itself, and I knew my team had my back, but I also know that not everyone has this kind of work environment, which is why this decision is so incredibly personal, and I want to talk about the factors that might help you decide whether to disclose or To keep it private.

Pros of Disclosing Your Rare Disease at Work

So I’m going to approach this as pros and cons, and I’m going to start with the pros of disclosing your rare disease at work.

Now for me, the biggest benefits of being open about my diagnosis for lymphoma was access to workplace accommodations, so once your employer knows, for cancer, because that’s legally protected. They can’t discriminate against you for your condition, and you may be eligible for accommodations under the Americans with Disabilities Act, the ADA.

So in my instance, that meant the flexibility for doctors appointments without feeling like I was sneaking around or making excuses. There’s also workplace support and understanding. You know, being up front about my health meant my colleagues knew why I had to step out for appointments, and I never felt like I had to justify it. It also meant they could step in and help when I needed and but that has to be collective. You have to have that culture where that’s okay.

And the other pro, for me was about reducing stress and anxiety. Let’s be real. Hiding a major part of your life is exhausting, and it can also kind of, you know, create a little bit of office gossip. I didn’t have to worry about keeping up a facade or feeling guilty for prioritizing my health. You know that mental weight was lifted, and that alone was worth it, because I was trying to learn what this disease, this cancer, the lymphoma that I have, was.

You know, when you’re told, oh, it’s indolent and it’s likely not, you know, going to result in death, and you hear that on one hand, but you hear the cancer word, right? And that just that can instill a certain amount of fear.

Cons of Disclosing Your Rare Disease at Work

There are also cons to disclosing your disease at work. And you know disclosure is not the right choice for everyone in any way, shape or form. And here are some reasons why people choose to keep their diagnosis private.

One is the fear of being treated differently. Even though workplace discrimination is illegal, it happens, and some people worry their employer will see them as less capable or pass them over for promotions or key projects. And I have to tell you, I have seen this in places. The fear of disclosure is real.

There is also the loss of privacy. Once you disclose it. You can’t take it back. The genie does not go back in the bottle, and some people prefer to keep their medical history private and don’t want to be known as that sick person at work.

And there’s also the uncertainty about company culture. If you do not fully trust your leadership or HR department disclosure might feel really risky. Some workplaces might claim to be supportive, but when push comes to shove, they don’t actually follow through.

Now I say all of this in the sense of pros and cons from me. I am not a lawyer. If you are in a situation where you need a legal opinion about workplace discrimination and ADA and covered disability, please consult with someone who knows the law and knows the law where you are located.

Making the Decision That’s Right for You

So if you are trying to decide whether to tell your employer, here Here are some questions you may want to ask yourself.

One, what do I need from my workplace? Are you looking for formal accommodations, schedule flexibility, or just understanding from your boss and coworkers?

Two, do you trust your employer to handle this information appropriately? Think about company culture, leadership, attitudes and how similar situations have been handled in the past.

Three do you feel comfortable setting boundaries? If you disclose you need to be ready to communicate what you do and do not want to discuss. I happen to be someone who’s very open, because I would like to educate people that cancer isn’t always a death sentence, and that it’s so tainted by what we’ve experienced in our past, we often don’t see what the present or future is. So I already know what I’m willing to talk about with people, and I also know and am comfortable telling people, yeah, no, we’re not going to talk about that. So that’s something you need to be able to do.

And lastly, will keeping it a secret cause more stress than its worth? Like I mentioned earlier, if you’re going to be worried about hiding appointments or explaining symptoms, if you have no poker face, disclosure might actually be a relief.

So if you decide to disclose, here are some things you might want to consider or different ways to approach the conversation.
You need to choose the right person. Is it your direct supervisor? HR, a trusted colleague? Think about who needs to know and who will be the most supportive based on your goals for disclosing, right.

You need to decide how much you want to share, because you do not have to give all the details. I have a chronic health condition that requires ongoing treatment meets the minimum requirements for letting someone know. You don’t have to go into what you were diagnosed with or how, how you were diagnosed, or you don’t have to, you know, pull up your sleeve and show someone what’s on your arm or any of those things. You get to make that decision, and you need to be clear about what you need.

If you need an accommodation, you need to be direct. I may need flexible scheduling on these treatment days. If you just want them to be aware, say so, and know your rights.

As I mentioned earlier, familiarize yourself with disability laws and your company policies before the conversation, and I’ll go and share this. From my experience, I worked for an organization that, with a different leader, I would have had to do paperwork for FMLA for every single one of my appointments three times a week, whereas my leader said, you get the work done. You do good work. Just go. If you need real more mass time off in the sense of thinking about days at a time, then let’s talk FMLA.

Now that’s skirting the policies at the workplace. And you know, some people are okay with that, and some are not. And depending on whether you’re in a salaried position or an hourly position, if your job requires you to be physically present and then you aren’t. That’s not an option a supervisor is likely going to make with you.

Final Thoughts

There, you know, some final thoughts. There is no right answer and there is no wrong answer. For me, it was the best choice because of my work culture and the realities of my treatment schedule. But for others, keeping it private might be the better path, and the key is knowing your rights, evaluating your environment and deciding what will make your work life less stressful, not more.

And I want to mention this, this approach. I want to drive home the culture of where you are, but I also want to point out the culture of where you think you might be going in the future.

I had a situation where I’d been with this employer for a long time. It was really great and and obviously it worked out very well for when I was to receive my diagnosis and my treatment. But when it came time to change jobs, if you looked at all of my digital assets for me personally, they would say something along the lines of quilter, crafter, car enthusiast living with the big C, right? Cancer, the big C.

When it came time for me to start looking for a job, I was a little concerned about that, that people would not interview me because I had cancer, and their experience would associate it differently than what I knew I could deliver. So I stripped that out of all of my digital profiles so that it was not present. And I did do some interviewing, and I did get a job that I wanted, and I got a job that I wanted with a place that that wouldn’t have mattered. But before I secured that, I realized I didn’t want to work for a company that would discriminate against someone because they were living with cancer.

I also understand I was in a position where I could make that choice. So that is something else to keep in mind.

Now, if you found this episode helpful, please make sure to subscribe to Fine, But Not Fine so you don’t miss future episodes.

In the next episode, we’re going to talk about finding the right doctor and building a medical team that listens, because let’s get real. Not all doctors are created equal, and when you have a rare disease, it can feel like half the battle is just getting someone to take you seriously. I’ll share what’s worked for me, what red flags to look out for and how to advocate for yourself in medical settings. Thanks for being here, and I’ll see you next time on Fine. But Not Fine.

Thanks for listening to Fine., But Not Fine. If this episode resonated with you, subscribe so you don’t miss what’s next. And if you’ve got a story, question, or just need to vent, reach out. I’d love to hear from you. Until next time, take care and keep on going.