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What It's Like Living and Working With a Chronic Illness

Last updated: 06-20-2020

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What It's Like Living and Working With a Chronic Illness

It’s 6 AM and your alarm is going off. You hit the snooze button, hoping for a few more minutes of sleep before you drag yourself out of bed. This is a morning routine most people are familiar with. But for workers with chronic illness, it can look very different.

Five years ago, I was working as a research assistant at a design school. I was also struggling with several undiagnosed illnesses, including narcolepsy, an immune condition, and a painful connective tissue disorder. Every night I’d set twelve alarms, turn the volume up, and plug my phone in on the other side of my bedroom. And every morning I’d sleep through them all. I started every day feeling like I’d already run a marathon and been hit by a truck as I crossed the finish line.

In many cases, chronic illness limits how much you can get done in a day. You start with limited energy levels, and when you add in things like chronic pain and immune problems, everyday tasks can drain your batteries before you even get to work. (Not to mention that doctors’ appointments and endless phone calls chasing after prescriptions and referrals can take hours out of your day.)

Learning to manage your energy levels is essential when living with chronic illness. You get used to checking in with your body, assessing how much any activity will cost you, and creating a kind of energy budget to figure out exactly what you can get done without pushing your body past its breaking point. But what happens when there’s just no way to balance the budget?

This is a huge challenge in workplace cultures that place a premium on constant productivity. Chronically ill employees often end up going into energy debt trying to keep up with what’s expected of them. Pushing your limits is often seen as a way of committing to your own personal development, but it can have a serious negative impact on your personal life and health, especially if you have a chronic illness.

Caitlin has fibromyalgia and currently works from home, but she used to work in retail. “My quality of life at the time was non-existent,” she says. “I couldn’t do anything except lie in bed or on the couch when I wasn’t at work. I couldn’t even job hunt because the pain and fatigue were so severe that I couldn’t think straight. I ended up quitting with nothing lined up.”

Chronic illness is also unpredictable. It’s one thing to manage your finances when you know how much money is coming in every month, but as any freelancer will tell you, making long-term plans becomes a lot more difficult without that certainty. Similarly, when you’re working with chronic illness, you often find yourself in a position of having to create weekly or monthly energy budgets without knowing what resources you’ll have at your disposal from one day to the next.

When your illness is invisible, you often face doubt from colleagues. Laura, a middle school teacher with an immune disorder, also struggles with PTSD because of harassment she faced at her previous job.

“I was told I was being ridiculous and overdramatic, that I was ‘letting kids down and setting a bad example’ by not pushing myself,” she says. Even after leaving that job, that experience continued to impact her work relationships. “It took probably five years in my current position before I didn’t have anxiety attacks if my boss needed to speak to me or I needed to speak to my boss about something.”

When you’re chronically ill, it often feels like doubt rules your life. People doubt that you’re sick. They doubt how hard you’re trying. They doubt that you’ll follow through on your commitments. And eventually, you begin to doubt yourself.

“To be uncomfortably honest, I am probably more disappointed in myself than [others] are,” says Kristina, a designer and digital modeler who has epilepsy. Struggling with even the most basic adulting tasks can leave her riddled with self-doubt, she explains: “One day I am fully capable of a task while the next day I struggle with generally simple things like brushing my teeth or getting dressed.”

When your abilities change so dramatically from one day to the next, you can end up questioning your own grip on reality. You know none of this is your fault, but deep down you can’t help but wonder if maybe, somehow, it is.

Three years ago, I had to stop working in my chosen field so that I could begin working full-time as a patient. And it was work, even though I wasn’t getting paid for any of it. My weekdays were suddenly filled with doctors’ appointments, lab tests, and phone calls to social services. I essentially had to become an administrative assistant to the six clinics I was dealing with, a biomedical researcher, and a health justice advocate. Just like my previous jobs, I often felt like I was just barely treading water, trying not to drown.

Last spring, I finally received the diagnoses I was fighting for and this fall, I went back to work as a consultant with a disability-led design group. Although I expected to feel overjoyed about returning to paid work, I’d become so used to struggling and failing that for weeks all I felt was terror.

But I’m still there, loving the work and starting feel more confident that I can actually do this. I’m also realizing that my experiences with chronic illness can be an asset. They’ve made me conscientious about time management, connected me to an amazing community of disabled creatives, and given me insights into how public systems and services are designed—for better and for worse.

Here are three key things that have helped me succeed in my new job:

This one was by far the hardest. It was also the most important for me because without access to the right medications and lifestyle strategies, I just couldn’t work reliably. I was lucky to have understanding bosses and colleagues at some of my previous jobs, but even with their support, I couldn’t get all my work done.

For many people with chronic illnesses, it takes years to receive a diagnosis. For women with autoimmune disorders, the average wait time is 4.6 years. For people with rare diseases, it’s 7.6 years. For me, it took 26 years to figure out what was going on in my body and how I could manage it through a combination of medications, mobility devices, physiotherapy, and lifestyle changes.

Accessing needed healthcare is also the most frustrating part—because it’s the one you have the least control over. Again, I’m lucky. I have a background in neuroscience, and an incredible support structure in my friends and disabled community. Together, they gave me knowledge as well as the strength to do my own research and fight for the answers I needed, even when I felt too exhausted to keep going.

Living with chronic illness is a learning process. Your body doesn’t work the way most do, so you have to figure out what makes it work better and what makes it worse. Bodies are complicated and so are the environments we live in, so it’s not always easy to tell immediately what’s making you feel a certain way. Some accommodations will help you and some won’t, and you won’t necessarily know until you’ve tried them out. Even when someone has the same illness, what works for them may not for you. You get used to treating your body like a science experiment—until you figure out what’s most effective.

One of the most challenging aspects of seeking accommodations for chronic illness is that many of the things you need can seem like luxuries to other people. Sitting in a desk chair causes me pain, for example, and can even make my joints dislocate after a few minutes. At home, I have a chair with memory foam padding on the armrests and seat and an adjustable footrest. Even so, I spend most of my day working in bed, propped up by mountains of pillows, and wearing leggings to reduce pressure points.

These are things I probably couldn’t get away with if I worked in an office. There are other advantages to working from home, too. Astrid works in the aviation industry and finds that, with her chronic pain and fatigue, her commute is a major barrier. It can be hard to get a seat on public transportation if you’re young and not visibly disabled. The walk from a station’s entrance to the platform can be long and exhausting. The heat of a crowded subway car can trigger a fainting spell.

But avoiding such obstacles isn’t always an option. “I once handed my boss a letter from a doctor saying I need to work from home for a couple days a week but he completely ignored it. Scoffed at it even,” Astrid says.

In fact, although the Americans With Disabilities Act requires employers to provide “reasonable accommodations,” many chronically ill people find that the accommodations they need are defined from the start as unreasonable.

Katherine, for example, has chronic fatigue syndrome and postural orthostatic tachycardia syndrome, a neurological condition that can cause fainting, weakness, and a kind of cognitive dysfunction known as “brain fog.” She’s an instructional designer who’s now found remote work, but points out that her job options are limited because of what many employers consider to be “essential tasks.”

“There’s often a section about how they don’t discriminate, but as long as there are things like ‘full time hours,’ or ‘must be able to lift 20 pound boxes,’ that section means nothing to me,” she says.

Part of the problem is that disability rights legislation like the ADA only protects accommodations if they don’t cause the employer “undue hardship.” What an undue hardship is, exactly, is open to interpretation, and when your illness is invisible and your access needs are complex and change over time, they can be easier to dismiss.

Unfortunately, there’s no easy or straightforward solution to this. What can be most helpful is to connect with local disability rights groups, and to develop support networks with your colleagues. On that note…

Travis Chi Wing Lau is a gay Chinese-American academic whose disability causes chronic pain and cognitive dysfunction. He’s found that connecting with other co-workers from marginalized backgrounds has been invaluable.

“Rather than on a departmental or institutional level, I’ve had to find support in key colleagues that understand this experience,” he says “Many of these colleagues are those from other marginalized groups—queer/POC scholars who actively navigate an academy that isn’t built for bodies like ours have offered invaluable advice and tools for someone in their early career like myself.”

I can relate. Working alongside other disabled people has helped me to regain some of my lost confidence. Because even with medications and an adaptive work setup, I am still chronically ill. There are times my symptoms will flare up in response to the weather or stress. I get things done, but I can’t always get them done on a rigid schedule.

Knowing my colleagues will understand if I disappear for a few days has made me feel more able to take time to rest when I need it—which has made it easier to get my work done when I’m feeling well. I also feel more comfortable checking in with them about how I’m feeling and what I need, which builds trust and lets them pick up the slack when they need to.

For me, that trust has been the most helpful accommodation I’ve found—trust that I’m doing my best, that I’ll get my work done even if it takes me a bit longer, and that I have something valuable to offer.

It can often feel like work has no place for chronically ill people. You’re slow and unpredictable. You’re low energy. Dress shoes, suits, and uniforms cause you pain.

Work is changing, though. Remote work is becoming more common and accepted. I’m based in Toronto and connect every day with my colleagues in New York and San Francisco by email, text message, and video call. Flexible hours are also becoming more popular, as employers recognize that a lot of people aren’t at their best from 9 to 5. And some companies are investing in new ways to take care of their employees as whole humans, beyond traditional benefits.

As digital environments change the ways people work and interact with each other, I’d love to see workplaces rethinking what it could look like to have chronically ill employees. What if accommodating chronic illness became a starting point for creating more comfortable and flexible working environments that would benefit everyone? What if accessibility were seen as a way to build workplaces that are truly welcoming and inclusive?

By treating accessibility as an opportunity rather than a problem to be solved, we could open up new ways of thinking about collaboration and shared accountability at work.

“We may work differently, but we can provide experience and quality that are worthwhile. We adapt, but we sometimes need tools to help with those adaptations [and] it is not too much to ask that employers adapt with us,” says Cate, who works in early childhood education and has fibromyalgia, rheumatoid arthritis, and idiopathic hypersomnia, a sleep disorder similar to narcolepsy. “We work together to create amazing futures. That’s when the best ideas happen.”

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