Making work work with chronic illness

Editor's note: my ability to work doesn't mean all sick or disabled people can. Disabled lives are not valued by what we provide for capitalism. Don't use my experience to make assumptions about others. Also, this is written from the lens of an American living in the United States. I can't speak to laws in other countries.

Living with chronic illness is hard.

My average day includes a variety of unpleasant symptoms—like near-fainting, a fast heart rate that reacts extra to anxiety and adrenaline, nausea, stomach pain, headaches, abdominal bloating and distention, and fatigue. There's also the brain fog, which can sometimes be so bad I have a hard time articulating thoughts and stringing sentences together, let alone remembering anything.

Despite all of this, I work full-time. (I mean, I kind of have to. My access to the quality of health insurance I need to afford managing my conditions is determined by my employment.) As a person who's been sick since childhood and has only gotten sicker as an adult, I've developed some coping mechanisms to make work work for me. I thought I'd share these tips in case they're helpful for others.

1. Identify what you need to do your best work

One of the most important things that's allowed me to advocate for myself and continue to work full-time as I've gotten sicker has been understanding what I actually need in order to do it.

Knowing this has helped me figure out the sort of companies I want to work for, the types of positions I'm able to do, and how to structure my day. It has also helped me understand the kinds of ADA accommodations (we'll get to that in a bit) that are helpful to me.

For example, when my POTS symptoms started getting worse, I realized pretty quickly that working in an office full-time was exhausting me extra and contributing to how poorly I felt. Last year, as my gastroparesis developed and brought with it nausea, pain, and more fatigue, it became clear that an entirely remote position that allowed for a more flexible schedule would suit me best.

Figuring out what you need can be tough. It's an exercise in self-awareness, brutal honesty, and research. I've found good ideas in the past by lurking in forums related to my illnesses, as well as by asking my care providers what their other patients have found helpful.

2. Know your rights

There are two important laws to know if you're a chronically ill or disabled employee in the United States: ADA and FMLA.

Let's start with the ADA

The ADA, or the Americans with Disabilities Act, protects eligible employees from discrimination based on their disability. I say "eligible" here because it only applies when an employer has 15 or more employees. (So if you're employee number 10 out of 10—like I was for quite a while at my last company—you're unfortunately not protected).

Some key things to know about the ADA:

  • It applies whether you have a job or are in the job search process.
  • The ADA defines a disability as a "substantial impairment that significantly limits or restricts a major life activity such as hearing, seeing, speaking, walking, breathing, performing manual tasks, caring for oneself, learning, or working." While this might sound prescriptive, it can be quite broad. Neurological conditions like dysautonomia, for instance, can cause a myriad of symptoms like rapid heart rate, dizziness, or fatigue that may make performing manual tasks or caring for oneself very difficult. If you're questioning whether your disability makes you eligible here, I would guess it probably does.
  • The ADA doesn't promise you'll keep or get a job. You still need to meet all of the skill, experience, education, and other job requirements, as well as perform the "essential functions" of the job with or without "reasonable accommodation." It can be tricky to know what essential functions are, but job descriptions are usually a good place to start.
  • You can get an accommodation—within reason—to do your best work. We'll talk about that more in a moment.

You can find more info about the ADA on the Equal Employment Opportunity Commission website.

Next, FMLA

FMLA, or the Family Medical Leave Act, requires employers with 50 or more employees to provide up to 12 workweeks of protected (though unpaid) leave for "qualified" family and medical reasons.

To be eligible for FMLA, you need to:

  • have worked for your employer for at least 12 months
  • have worked at least 1,250 hours over the last 12 months (if you're doing typical 40-hour weeks, that's 31.25 weeks)
  • work at a location where the company employs 50 or more people within 75 miles (aka if you're remote, FMLA may not apply to you)

For more info on FMLA and what family and medical reasons qualify, check out the Department of Labor website.

Depending on where you live, you might also have state-based rights, so be sure to do your research. Your HR team will likely have more information (though I'd recommend approaching these conversations with caution).

Doing this research can be a lot of work, and also knowing your rights can help protect you in the long-term.

3. Request ADA accommodations if you can

I've mentioned accommodations twice now, so let's talk about them. Per the ADA, you may be able to get what's called a "reasonable accommodation" to help you do your best work.

But what is a reasonable accommodation? According to the Department of Labor, it's a "modification or adjustment to a job, the work environment, or the way things are usually done during the hiring process."

The potential catch here is with the word "reasonable." To be considered reasonable, the accommodation can't cause an "undue burden" to the employer, aka something "requiring significant difficulty or expense."

Asking for accommodations is a vulnerable thing. It can be nerve-wracking and even difficult if your HR department isn't super familiar with how to go about it. It's possible your employer might not even have HR.

It can also be hard to know what to ask for if you're not used to having the option. Fortunately, the Job Accommodation Network (JAN), has a ton of resources. A few that may be particularly helpful:

Historically, I've had accommodations providing the ability to work remotely, have more flexiblity in my schedule, and also around how I can use certain financial perks provided by my employer.

4. Find people you can trust at work

Disclosing that you have an invisible illness or disability to colleagues can feel risky. In the past, I've worried that if I didn't tell my coworkers about my illness, they'd see my frequent appointments or remote work as weird flakiness. On the other hand, I worried that if I did tell them that there was a medical thing going on, they'd see me as unfit to do my job.

Whether or not people have had those thoughts, I don't know. What I do know is that illness is lonely and isolating. It can be extra mentally draining to do your job despite feeling awful and not have anyone at work who knows that it's harder for you to human than the average person.

Figuring out who I can trust with the truth in workplaces has made my days much less stressful and provided more community.

Two specific ways I've done this:

  • Participating in a private Slack channel for people with chronic illness or disability. It's just really nice to have folks to commiserate with when you need it. (Keep in mind nothing is ever truly private on work communication tools.)
  • Disclosing to my manager when it's been safe to do so. I've had some really bad experiences telling my bosses about my illness. I've also had some really good ones. You're absolutely not required to tell your manager any details about your illness—not even for an ADA accommodation—and I'm not necessarily suggesting you do. All I'm saying is that a trustworthy boss knowing something is up can help ease any worries or anxieties about being seen as unemployable, since they're the ones ultimately in charge of your current employment.

5. Be comfortable with "enough"

In college, I was one of those students devastated by anything less than an A. Naturally, that same sort of perfectionism carried over into my work life. It shows up in a variety of ways, including an unnecessarily close attention-to-detail, putting in extra hours to make something just right, and crushing disappointment when I inevitably make a mistake.

Perfectionism has brought me a ton of anxiety and insecurity. It’s rooted in people pleasing patterns that put others’ needs over my own—patterns I've spent countless hours in therapy working to break.

One of the best things I regularly do for myself is allowing my work to be just good enough. There's no such thing as perfection. Trying to achieve it is a waste of energy—and I'm short on energy. It's definitely not easy and I'm by no means perfect at it (see what I did there), but it's something I try to practice every day.

Something I've learned, too, is that what I deem enough seems to be pretty damn good to other people.

6. Prioritize yourself

My value as a disabled person is not defined by my capitalist output. I am worth so much more than that.

A career coach I used to work with reminded me often that I am my number one job and I need to set my priorities accordingly. That was true then and it's still true now. And so I set my boundaries to reflect it. When I'm using my paid time off, I don't check in with work. I'm not apologetic about having appointments. I put my own needs before the company's needs.

That said, I know that being able to prioritize myself like that is a huge privilege. I don’t have children or extended family I need to provide for. I also have an employer that encourages me to put myself first. That's not true for everyone. I understand that some folks might risk losing their jobs by setting firm boundaries.

I wonder, though, if there are other small ways we can put ourselves before the companies we work for? Maybe in making sure we use all of our paid time off if we have it, that we utilize our sick days when we’re feeling extra garbage, that we take the breaks provided to us by law. I don’t have all the answers, but I support you figuring out what works for you and what you need.

As with any tips I throw out there, take all of this with a grain of salt. What works for me might not work for you. Also, if you have any questions, need any advice, or maybe just need someone to commiserate with, hit me up on Twitter. As of publishing time, my DMs are open. I can't guarantee a speedy response—it depends on my time and energy—but I'd like to be as helpful as I can.

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