You Don't Have to Disclose Your Illness at Work

            For the past year and a half since I started graduate school, I’ve debated disclosing my chronic illnesses to my advisor. When I interviewed, I explained that I’d had a chronic illness in the past (since we discussed my leave of absence from college), but I didn’t say anything about current conditions. I planned to do it when I started the program, but then I started virtually so I told myself I’d do it when I met him in person. And once we met in person, I wanted to wait until the field season had started because I wanted him to see me as a person before he learned about my illnesses. I realize that this is a major privilege of having my invisible illnesses, that I can choose if/when to discuss them.

            Then, a few months ago, I started to become really sick again in a way that frequently interfered with my work. I stopped going to classes in person (luckily they all had a virtual option), and I found myself canceling meetings frequently and falling behind on work. When it first started, I assumed it was a virus or temporary illness, so I didn’t even consider telling my boss anything besides the fact that I “was sick”.

            However, after a few weeks I started to recognize symptoms that I’d had with previous illnesses, and some symptoms weren’t going away. I still don’t know what’s causing them, but at this point it’s most likely a combination of chronic illnesses I’ve dealt with before and possibly new conditions.

            During the summer, instead of taking classes I work full-time as a research assistant to my advisor. The first few weeks of this summer were hard- I found myself struggling through every work day, still calling in sick several days a week, and too sick to do anything on the weekends. Every time I told him that I was too sick to work I debated if I should tell him anything else or talk with him more about what was going on.

            I spent hours reading articles on The Mighty, blogs, and other websites about discussing chronic illnesses with your boss. Every article had a different suggestion: some said never ever disclose your diagnosis with your boss, and only talk generally about it when you need accommodations. Others advised being up front about your diagnosis and how it could affect your work in the future. Out of everything I read, there seemed to be two conclusions: 1) it depends on you, the specifics of your medical and work situations, and your relationship with your boss and 2) you legally don’t have to disclose anything, so you should only do it if you’re comfortable with it.

            Eventually, I decided that I would tell him some of what was going on, as an explanation for why I’ve missed so much work and to ask for more flexible hours in the future. I didn’t particularly care if he knew about my medical conditions, but it did feel sort of strange because he doesn’t know much about my personal life.

            The next day, when our plans for the day got cancelled, I asked if I could meet with him. When we sat down, he asked if we could talk about my health, and I said yes. When he asked how I was doing, I said okay. Even though I’d planned to, I didn’t say anything more specific, and he didn’t ask.

            Instead, he told me that I could take as much time off as I thought would be helpful. He said I could work half days, or take a few days or even a week off if that would help. And he explained that it was okay if we missed some of my research plans for the summer, that it didn’t matter compared to my health. Finally, he asked if there was anything else he could do to help me.

            I’m so grateful of his response. I’m grateful that he was so supportive of me. That even though I felt like I was asking a lot by asking to shorten my work day, he never made it feel like I was causing a problem.

            I was shocked that he could be so supportive and offer so many helpful suggestions even though I didn’t disclose my illness.

            In everything I read, it seemed like the only way to be supported by your employer was to disclose your illness. Even if you didn’t name your conditions, it seemed like you had to describe somewhat how it affects you and your work. And I’m sure that can be extremely helpful, especially if your boss is unsure how to support you. However, in this moment, I wasn’t ready to do that.

            In the future, I might decide to talk more about my health conditions with my boss. If symptoms change how they affect me at work, maybe that will be a conversation. Or maybe I’ll just decide that I would like to talk to him about it.

            But I now realize that the choice to disclose your illness should not affect how you’re treated and if you’re supported. You should not disclose it because you feel like you owe someone an explanation, or because you feel pressured into it.

            I’m glad I didn’t discuss it in more detail with him, because I clearly wasn’t ready. I thought I had to be ready, and I thought the fact that I had read about it, thought about how I’d bring it up, and planned what to say meant that I was ready. But it didn’t: I still felt uncomfortable about it, and I realized that it wasn’t just because I was nervous about having the conversation, it was because I was still sort of uncomfortable about how it would affect our relationship.

            I hope you find people who are as supportive as I did. If your boss isn’t, talk to Human Resources or find someone else at your work to help you. And I hope that if you decide to talk about your illness, you do it because you want to, not because you feel as if you owe anybody an explanation.  

The Strengths of Living With Chronic Illnesses

 

“Courage doesn’t always roar. Sometimes it’s the quiet voice in the night saying we’ll try again tomorrow.” ~Mary Anne Radmacher

 This week has been challenging. A year ago, I would never have imagined that I could handle such a thing. But honestly, it hasn’t been the hardest week this year.

I keep seeing posts on Instagram about strength: about building mental strength to focus better and push yourself at work. About people building physical strength with big lifting goals or by training for longer road races.

And obviously, those are incredible strengths. But there are other types of strength that we don’t talk about. Those are the strengths I’ve used this week. The strength to ask for time off work even though I’ve missed a lot of work recently. The strength to give yourself time to rest. The strength to do a painful medical test that you know will make you sick because you need the answers it might give. The strength to get up every morning, even though you’re exhausted and in pain. The strength to decide that even if today was miserable, I will go to bed hoping that tomorrow is a new day.

I had two tests done yesterday: a colonoscopy and endoscopy. I was terrified for both of them: the endoscopy because I was traumatized by the same test when I was seven years old, and the colonoscopy because I’ve heard that it’s terrible. My whole life, I’ve been terrified of vomiting, and during the preparation I vomited 12 times.

But there were other parts of this week that were challenging. I had to talk to my boss over the long weekend to ask him if I could miss half of the work week to do these procedures that needed to be done this week. I had to ask a new coworker to drive me to these appointments because my other friends can’t drive. I had to manage the scheduling, pre-op, and post-op care for myself since I live alone and my family couldn’t come to help me.

These aren’t the types of challenges and skills that you can post about on social media. These aren’t things I can tell my friends about. But they’re my reality. And I’m proud of myself for being strong enough to do them.  

When we think about invisible illnesses, we often think about the challenges, the struggles that people don’t see. But that’s not the only thing people don’t see: they don’t see the strength that keeps us going everyday. They don’t see the determination that lets us put up with the many challenges. They don’t see the skills of self-advocacy we are forced to develop. They don’t see the strength it takes to resist the endless pressures of hustle culture.

 It’s not easy to talk about, most people who haven’t experienced chronic pain or illness can’t imagine what it’s like. When you think about a ‘typical’ sick day, it doesn’t seem like it’s about strength, it’s mostly about resting and recovering for the next day when you’re better. But with chronic illness, you never know if/when you’ll be better. Instead, you have to be strong enough to keep going anyway.

I first read this quote in Jessie Diggins’ “Brave Enough” (an incredible book that everyone should read). To me, it perfectly captures the strength we must have to live with chronic illness. Sometimes, we forget how strong we have to be. Sometimes, just choosing to keep living our lives is the hardest thing in the world. Even on my hardest days, this quote reminds me to keep going, and that sometimes, just that decision is everything.