Do You Tell Your Employers About Your Chronic Disease?

Hi, guys! Hope you’re enjoying your Tuesday!

Since my latest post was a tell-all about my diagnosis with ulcerative colitis (UC), I thought I’d keep that train rollin’ by answering a question that people ask me often:
“Do you tell your new employer that you have a disease?”

If you’re in remission and you have been for years, why mention it? This hasn’t been the case for me just yet. At the end of the day, it is YOUR business and ultimately your decision, but it’s a delicate decision that necessitates your attention.

My biggest motivation behind not telling employers:
-I did not want to be viewed or treated differently than my healthy, normal counterparts. I wanted the same expectations as my peers, no less. If people KNOW I’m missing work for treatment, they can have difficulty comprehending that. “She looks fine and acts fine. Is she just taking advantage of her situation?” Didn’t want that, either. But realistically, I do need special favors occasionally, and it’s difficult for me to be honest with myself about that. I do need employers to understand that I would LOVE to not leave early for an infusion, and being on time to work every day for years would just be the greatest. But instead, I have to juggle between symptoms and a commute; between feeling normal in exchange for a few hours of my time for a Remicade infusion. If they know me, then they know that I’m willing to work hard in spite of my health, and that’s what I really want my employer to understand.
-I didn’t want my employers to say, “No. We can’t afford you leaving early every six weeks for an infusion.” I guess in my eyes it was easier to ask forgiveness than permission. That sounds, bad. I know.
-I didn’t want to think of myself as requiring any sort of special attention or accommodation. It’s not legally a disability, but I didn’t want to think of myself as having limitations, especially in the workplace. For goodness sakes- I’m in my twenties!

I’m not going to lie. In my dream job I’m my own boss, but since I’m not there yet…here’s a few of my experiences:

Scenario 1:
I recently graduated from college, 22 years old, and just landed a job at a mega oil company in Houston. I didn’t tell anyone about having UC (diagnosis was “Crohn’s” at the time) until my Remicade treatments came up. My boss, who was amazing, kindly asked when he was approving my time-off request, “Why do you need off the Friday every six weeks for the rest of the year?” I told him in confidence. “I had no idea,” was his response (#InvisibleDisease). He never told a soul, and he was completely understanding. He even made a quick call to HR and offered me health benefits on the spot, rather than waiting the “trial time” of my employment that was per standard procedure. Once I got to know my coworkers, they found out about my diagnosis too. No one treated me differently, which was my biggest fear of all. This was completely ideal. Unfortunately, the oil industry wasn’t my thing, and I left all the amazing people at that
job for new opportunity.

Scenario 2:
I worked for a well-known jewelry retailer, and was desperate for a job when I found this one.(Lesson learned- DO NOT TAKE A JOB OUT OF DESPERATION). I didn’t tell anyone during my interview about UC. I didn’t think it would affect my schedule, so I just left it alone. Unfortunately, I had a small flare during this time that made me late for every morning shift (even though the shifts weren’t all that early). One morning the worst-case scenario happened: shitting in the car while stuck in traffic, turning around, throwing clothes away, taking a shower, changing clothes, and finally making it into work. I called ahead to let them know that I was running late. I didn’t know how to properly say, “I pooped my pants on I-10, and I’m having a tough little time! Coming soon!”. Didn’t matter anyway- I was too late too many times: “We’re removing your full-time status and eligibility for healthcare benefits.” Then, I broke down in tears (rough morning!) and told my boss about my diagnosis, and she felt that she had been blindsided- fair enough. She wished I would’ve told her during the interview, been more upfront with her. Okay, fair. fair. I left that job feeling small for taking a job out of desperation that I knew wasn’t a good fit; for not being upfront with my boss, and for being naive enough to think they’d wasp it all away. Real World: 1  Stacey: 0

Scenario 3:
This job required an intimidating, multi-step interview process, and I REALLY wanted to get to know my potential coworkers before taking the job, much less tell them that I’m a chronic hot mess (but I will work really hard!). We instantly hit it off, and they called me back for a second interview with even more staff members. This time, at the end of the interview, I told them that I would need off for half of Friday every six weeks for my infusion and briefly explained UC. They seemed concerned, but I reassured them that I felt I should be upfront and honest. “I don’t want to waist anyone’s time.” Their response, “Well I leave work early every six weeks for a hair appointment. At least your excuse is legitimate.” SIGH OF RELIEF. I took the job.

Should YOU tell your employer? I can’t answer that for you. But from my experience, the right people will understand and welcome your work ethic even if it comes with a hiccup here and there,  as long as  you’re upfront and a hard worker. People can be accommodating and surprisingly understanding, and not all of them like to feel blindsided. If you can successfully juggle symptoms and a 9-5 without telling anyone, then more power to ya! Maybe I’m the one who should be taking notes from you- do tell! 🙂

Yesterday was a big mess, but this morning started out with TWO messed up tires when I thought I had one. Thank God for Zack!!!


Treader Joe’s finds:


Hope your day has been a good one!


Question: Did you tell your employer about your chronic disease, or did you keep it a secret? What are your thoughts? 


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