Make your job work for you—even when your health is struggling

Career coach Phoebe Gavin on how to talk to your boss, lead a team and build a sustainable career with a congenital heart condition (or any chronic illness)

She’s had enough. Photo: RyanJLane

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Out of nowhere, my heart rate jumped to almost 200 beats per minute. I was standing on the subway platform near my apartment in Brooklyn, heading into the office. By March 2023, I’d been having these arrhythmias—supraventricular tachycardia, to be specific—for a couple of years. On the outside, I looked like an average commuter. Inside, my heart rate was trilling along at a breakneck staccato. I boarded the train, swallowed a pill, waited. As the train jostled into Manhattan, I struggled to steady my wrist and record an ECG on my watch. Waited. Eventually, when the SVT didn’t stop, I resigned myself to going to the emergency room. 

Amid all the alarm and hassle of that day, a series of mundane questions preoccupied me: What do I do about work? What will my boss think? How much do my coworkers need to know about what’s going on? Am I shirking my responsibilities for something silly? On the one hand, this was serious—serious enough that I was taken immediately to an ER bed and swarmed by nurses and doctors like something out of a TV hospital drama. On the other hand, I had done this before. I mostly knew I was going to be fine. (And I was.) I needed my coworkers to know that I wouldn’t be available for an undetermined number of hours (maybe longer), but I also didn’t want to freak them out. 

That balance of navigating health issues at work is tricky for anyone. People with congenital heart conditions experience a wide spectrum of impacts on the job: Some are disabled; others don’t need accommodations; still others fall into an area in the middle, with periods of illness or crises. How do you manage it all?

If anyone is qualified to answer this question, it’s career and leadership coach Phoebe Gavin. I first met Phoebe, who is based in Alexandria, Va., when she helped me find my current position after my supposed dream job proved taxing and isolating. Since then, I’ve seen her speak at several conferences and on podcasts (including

Anne Helen Petersen

’s “Work Appropriate”) about work-life balance, being a good manager, and what to do if you get laid off. She has an incredible talent for answering big, complicated questions with actionable, compassionate advice. (She also has a resume workshop coming up this month!)

I spoke with Phoebe about how to get the help you need from your boss, being a leader with chronic illness, how to deal with the part-time job of being sick, what to do when you feel like a burden, and much more. Our conversation is full of great advice, whether you’re looking to make a change to your work life in the new year or not. Read on!

Got more questions? Leave them in the comments! I might do a follow-up Q&A if this would be helpful. 

How much should you tell your employer or your boss about your chronic illness?

There are two things to keep in mind. First is the overall tone and tenor of the working relationship you have with your supervisor and the culture of the company. Is it one where you have a good relationship and the company generally has an inclusive, employee-centric, employee-positive posture? If the answer is yes, then you can be a bit more proactive and a bit more open about what your situation is, what kinds of challenges you anticipate or are going through, what kinds of needs you have. Because the likelihood of experiencing indirect or direct negative consequences for that are lower if you have a strong relationship and a constructive relationship with your supervisor and you're operating in a workplace cultural context that is supportive of employees.

Not all working relationships are constructive. Not all cultures are conducive to people taking care of their health. If you're not in a situation like that, I certainly would recommend focusing more on, what are the needs right now? Versus being proactive and trying to set up structures proactively the way that you would in a friendlier environment.

In other words, don't disclose more than you have to? Ask for more specific things?

If you're in a really good environment, you have a good relationship, then it's really worthwhile to be proactive. Once you get established in the role, what the demands are, you can predict if your condition allows you to do so. “These are the sorts of things that I can see being a challenge or needing accommodation or needing additional flexibility.” And then you can have a conversation about that with your boss proactively so that you have some support infrastructure built in before you need it versus needing it and having to ask for it and maybe having a lag or having to have that conversation at a time that feels more strained or when you're more drained from your condition. But that's only possible or only advantageous if you're in a context that allows for that.

If you're not in a context that allows for that, then it would be more advantageous to wait until you have a really clear need that you have to use your legal protections to access, because then you don't have that relationship and the context to rely on for safety, you have to rely on the law for safety. You want to make sure that you need that.

What happens with CHD folks sometimes is that everything's good and normal and then there's a crisis. You land in the ER or you have to get surgery or something like that. So that's a really useful framework for that kind of experience as well.

Another thing to keep in mind is that this is a situation where getting information from your employee handbook and your benefits package is absolutely essential. Especially if you're not really sure what the vibe is. At least doing that first initial pass of research on your own without engaging with HR so that, if you have to do that—engage with HR or with your direct supervisor—you already have a basis of knowledge of, this is the commitment that the company has made based on the benefits package and the employee handbook. And I'm calling upon that because I have needs. Versus you going to your supervisor and saying, “What's available?” Or going to your HR and saying, “What's available?” That puts all the power in their hands. If you have those assets—not all companies are developed enough to have those assets—then it is really in your interest that you be deeply knowledgeable about what's accessible.

Another thing that's really helpful if you have access to is an employee assistance program. Sometimes it's not just medical or mental health, sometimes an EAP program is going to also have some legal support, so you can get some actual legal counsel about how to approach that conversation. 

Your doctor is probably also going to be in a place to help you understand what kinds of materials they can provide so that if you need to engage with HR, with some sort of corroborating evidence from a medical professional, your doctor is going to be able to tell you what they can provide. Getting all of that information upfront before you need it is really helpful. If you already have a diagnosis where you know something like this could happen, it's in your interest to be proactive. At a place where you are more balanced, where you have more energy, where you have more mental, emotional and financial assets to put toward setting up success infrastructure for yourself, be proactive in doing that.

Phoebe Gavin is a career and leadership coach.

What about the conversation itself? When you're sitting across the table from your boss, do you have any tips for how that could go?

It's going to be different for everyone, but a handful of things that I would encourage you to keep in mind is to be clear about the necessity. The person on the other side of that conversation is probably not someone who also has a similar level of knowledge in chronic illness and in particular your level of chronic illness. And so you do have to play a little bit of the role of educator to help them understand that the situation is serious enough to where the requests that you're making are necessary. It's easy to feel resentful of needing to do that, but the goal is to have a person on the other side of that conversation be a collaborator with you to find a solution that works for everyone—versus you fighting against each other to try to get something that works for you or try to get something that works for the company.

The clearer you can be about it being real and it being necessary and describing it in a way that a lay person would understand, the easier it's going to be for them to summon empathy and to really be in the space of trying to be collaborative. The other thing to talk about is how giving you the accommodations that you need allows you to do your work better, where you can really emphasize the abilities that you have and the results that you're able to drive when you are back to whatever capacity makes the most sense for you after you receive those accommodations. And how it is worthwhile for the person across the table and for the company in general to give you the things that you need without a whole lot of fuss. Focusing on the abilities and your commitment to the job and your willingness and investment in managing your condition in partnership with them.

Anytime you're asking anyone for anything—you've probably heard me say this—you are in a negotiation. In this situation, even though you have legal protections, even if you are working in a friendly context, you're still engaging in a negotiation when you're asking for accommodations. It is always useful to try to make the relationship that you have with the person that you're negotiating with collaborative versus adversarial. If it feels like a zero sum game where you're asking for something and they have to give something up, then you're going to be less successful in that negotiation than if it feels like a collaborative effort to solve a problem you care about.

That totally makes sense. What about with coworkers? Sometimes if we're running up a couple flights of stairs, that's going to be harder for me, for example. Should someone say something in situations like that?

It really does come down to the day-to-day of the job. If you need an accommodation for the day-to-day of the job, and you do that work in collaboration with others, it may be useful—depending on the context you're operating in, the kind of work that you're doing—for them to have some level of awareness of what your accommodations are, some level of awareness of why, so that they know how to work with you in a way that helps you both get the work done well.

It's going to be different for every single person. And it can even be different from situation to situation. It could be that this aspect of the job with this particular set of collaborators, I need to do some disclosure, but with these it doesn't matter. It's okay for you to not have a one-size-fits-all answer. I hate to give people the impression that they have to hide it, but I also hate to give people the impression that they have to tell everyone. It's your comfort level and what you need in order to do your job well and to access the care that you need in a way that you need it. It's going to be different for everyone.

That makes sense.

It comes back to necessity and context. Do they need to know, and is it a workplace context or a working relationship where it seems friendly? If they don't need to know or if the context doesn't seem friendly, then you are going to want to be a bit more conservative with information. If the opposite is true, then you're going to want to be a bit more forthcoming. Still strategic, but a bit more forthcoming.

A lot of people with chronic illness have a second part-time job, which is doctor's appointments, dealing with insurance companies, anxiety, fatigue, all of that. I know you think a lot about work-life balance and boundaries. I'd love to get your take on how to navigate the work of your job with the work of being sick.

The most important thing is that, when you're sick, be sick. When you're at an appointment, be at an appointment. When you need some sort of rest or replenishment or care activities because that's what your body needs, do everything that you can to unplug from work so that you can focus on what your body needs. What that looks like, or how possible that is, is going to depend on individual people and their individual circumstances.

But we are conditioned to give everything to our jobs. That's difficult for everyone, and it's even more difficult for folks who have chronic illness. Whether that is mental or physical, emotional, whatever, it is so much harder to resist this idea that I'm not doing good enough because I'm having to leave for this appointment, or I'm having to take this sick day, or I'm not able to operate at capacity because I'm having an issue with my chronic illness.

One of the kindest things that you can do for yourself is to train yourself out of that conditioning. And it is conditioning. It's that we received these messages from when we were really, really young, observing our family of origin or our cultural origin all the way through school where those same sorts of dynamics played out in the educational environment of, what's your attendance record, and then all the way through higher education and all the way into our first employment experience. This idea of, you have to give everything to work and/or school.

It takes time and it's uncomfortable to train yourself out of that. But as you start to push the boundaries and feel for the edges of what is possible in your own context, you start to feel more confident in your ability to take care of yourself in the way that you need to take care of yourself. Or you become more open to switching to a context where you can take care of yourself.

That second part can be really essential as well. Because if you're in one of those more hostile contexts, another thing that we are conditioned to be is grateful for our employers, grateful for our jobs, grateful for our paychecks, and afraid that if we take a risk on ourselves, take a bet on ourselves, a risk with our careers, that the next thing is going to be worse or we're not going to be able to find a next thing. Especially if you are managing a chronic illness, it is really essential for you to prioritize finding context where you can be well as much as possible. If you're in a context where that's not possible because it's a hostile context, giving yourself permission to seek out healthier and more accommodating contexts is really important.

You mean potentially a new job?

Yeah. Or it might even be a whole career change. If you know from a young age or from the beginning of your career that you have certain constraints and limitations that you need to take into account as you build your career, then the likelihood of you needing to make a huge change in your professional context to accommodate your chronic health issue is lower. But [people whose congenital heart issues show up later in life] might have to just completely change careers in order to accommodate their health challenges. It can be really difficult for people to give themselves permission to do that. But it's absolutely essential. Because at the end of your life, you're not going to be looking back and thinking, Man, I wish I would've done a better job for my employer.

But we're conditioned to prioritize that over our health and over our families and over our friends and all the other things in our lives. Regardless of whether changing from a hostile to a friendly context means changing jobs or changing industries or changing careers altogether, it is worthwhile to make that decision for yourself because you're going to end up having a healthier, happier, longer life. And that company is going to live or die without you.

Do you have any go-to resources for navigating these kinds of issues?

The biggest thing that I recommend to folks who are at the precipice of this kind of decision is the importance of actually talking to counsel. That's going to be different from jurisdiction to jurisdiction, so I can't send everyone to lawyers.com! But it is really important and helpful to have a conversation with someone, an employment lawyer who is deeply knowledgeable about [the Americans with Disabilities Act], and that's not going to be a cheap thing.

Certainly the last thing that someone with a chronic illness needs is more expenses. But it's one of those investments where you could have a one-hour conversation that completely changes everything about the way that you engage with your employer. And without that conversation, everything could have been a lot harder. It can also save you a lot of time. A lot of times what folks will do in this situation is that they'll fall down a Google hole and then spend dozens and dozens and dozens of hours trying to find the answers that they could just pay to get and have those answers be correct versus I think this is right. I saw this four times on four different websites.

Find a lawyer who operates in your jurisdiction, an employment lawyer who's knowledgeable about ADA, and just have a conversation with them. It's not going to be cheap, but it's not going to be more expensive than staying in a job that is not showing you respect and being anxious and in pain because you aren't able to get the accommodations that you need.

For the managers in this situation: What if you have direct reports, if you're leading a team, and you have a chronic illness? What are some ways that you can navigate that better?

There are two ways that I want to come at this. One is that if you have a team and you have a chronic illness, you have an opportunity to model healthy behavior for your team. You have the opportunity to build into the culture of your team, “We respect people's health, we respect people's bodily autonomy, we respect people's needs. And the way that I model for all of you that that's what we do is that I'm open about my own.” That is a choice that every individual leader with a chronic health issue should make for themselves. My personal opinion is that the more leaders choose to do that, the healthier our workplace cultures are going to be.

There are definitely downsides to doing that, and there are definitely ways to do it that are less constructive, but the reason why we feel like we have to hide it is because we don't see people talking about it. We don't see people in power talking about it. Whether you're just a line manager with a few direct reports, you are still a person in power who can model for someone else that it is okay for us to be humans with bodies that need things sometimes. 

But in terms of your own responsibilities, one of the challenges about being in management, and I hope it's okay if I use a little bit of colorful language, is that as soon as you take your first leadership position, you are signing up for 360-degree ass-kicker-y. Everyone is wanting something from you. Everyone is unhappy about something. Everyone is asking you to do something that you can't do. From every single direction. Your direct reports, your cross-functional partners, your supervisors, your skip level, everybody wants something from you and is upset if they're not getting it.

That creates pressure regardless. If you have a chronic illness, your capacity to deal with all of the demands and the associated ass-kicker-y is lower than someone whose body is doing the things that you want a body to do. It's really important for you to decide, again, going back to, is it necessary to disclose? The folks that are making demands that are not manageable for you because of where you are in your health journey? It may be necessary to disclose to them. It may be necessary to bring HR into the process so that the legal protections can kick in and you can get what you need in order to both care for yourself and to do your job well. 

It is going to be really important to make sure that you are being proactive about what your capacity actually looks like relative to your chronic health condition and being thoughtful with yourself about when does it make sense for me to disclose additional needs, make additional requests, so that I can balance my health needs and getting my work done. It's definitely a lot more challenging when you're in a leadership position, but then there's this tipping point where you get high enough in the organization that you have enough autonomy that you can start making those decisions for yourself without having to do a lot of disclosing. And so it kind of depends on where you are in the organization.

The thing that I would worry about is oversharing or being a burden or just being weird. 

Let's talk about each one of those separately. Oversharing is really about sharing in a way that makes others uncomfortable. Generally, when someone is oversharing, it's because they are not being thoughtful about who they are communicating with and why. What is the intended outcome for this communication? It is more—not self-centered like selfish but more self-centric. I want to communicate this, so I am communicating it. Versus I want to accomplish a particular goal and communicating this will help me accomplish this particular goal. Those are very different ways of approaching communication about anything.

Oversharers, who tell us that their kid had diarrhea or whatever, are just not being thoughtful about why they are sharing what they're sharing, with who they're sharing it with, at the time and at what level of detail. The way to avoid being an oversharer is being intentional.

It's not just for your own benefit. It’s for some larger reason. 

If you're just venting, that's probably something you can do with your friends. 

That leads us to this idea of being a burden. There are two things with being a burden. One is that I hear that concern more from women than I do from anyone else. Not just around chronic illness, about everything, about anything. My female clients are much more likely to be concerned about expressing their needs and them being a burden, regardless of what the needs are. 

I would encourage folks to, regardless of their gender, check in on how you would respond to a similar request. If someone asked you to make that sort of accommodation, whether it's a formal, capital-A accommodation, or just a regular request, how would you respond? If it is possible to meet your needs in multiple ways, can you communicate that? “This is the way that will be the easiest for me, but I would love to talk to you about whether there are other options that will work better for you that still gives me what I need to be well.”

Having it be an open conversation where it's a bit of a negotiation where everyone's needs are being met, that can get you away from feeling or being burdensome. But at the end of the day, it is not burdensome to live. You deserve to live. If you need certain things in order to be healthy and well, my request and invitation would be for you to prioritize your health and your life over other people's comfort.

And then the last one is “weird.” Congenital heart disease affects so many people, but it's so under the radar. It's such an intense thing to say, “Oh, I have a heart issue. I had heart surgery. I have to go get all these tests done.” It feels really intense to talk about. I don't think it's just me. 

It is intense. Someone who is unfamiliar with that, it feels very death-approximate.

Right! Exactly. 

And people are generally uncomfortable thinking or talking about death. It makes sense to me that for a lay person who is unfamiliar, for it to be like, “Whoa, you had heart surgery?! Is that something that we need to talk about?” I can totally see that. But again, it comes back to necessity. The necessity is, I need to tell you that I am going to be out of the office for two weeks because I'm having this surgery and then I have to be in recovery and I'm not going to be able to work. Then it is actually essential for you to know what's going on, regardless of whether it makes you uncomfortable. You're going to be uncomfortable with me disappearing for two weeks if I don't tell you. 

That's a fair point.

But if we're just grabbing lunch, like, “Oh, by the way, next week I'm having surgery.” That's kind of weird.

Also a fair point! Is there anything else that’s important to know?

One thing that we have not talked about is that I encourage you to document from the very beginning, from when you start your job, any interactions or discussions or disclosures that you make with anyone at the company. Have a separate document that you keep on your own personal drive somewhere where you are keeping track of all of those things. Because if at any point you need to take some sort of action against your company, that documentation is going to be essential. My goal is for you to never need it, but my nightmare is for you to need it and not have it.

Interview has been condensed and edited.

How have you navigated health issues and a job? What’s your best advice?