It’s one of the first questions we ask each other when we meet someone new: “So what do you do?”
Your job defines your life in more ways than just earning a living. Often, it’s also an expression of your talents and interests, whether that’s an intellectual challenge or a way to showcase and sharpen your skill set. Working allows you to contribute to the world and connect with coworkers and clients.
When you become chronically ill, suddenly managing your health becomes a full-time job. Your days are filled with hospital visits, trying new therapies and endless resting – and not the ‘chilling in the sun’ kind. It’s hard enough making it through the day without dealing with work deadlines on top of the pain, fatigue and debilitating symptoms.
If you’re not able to return to work, you may lose a part of your identity and self-worth. Not to mention the stress it gives to lose your income, depend on welfare or lean on your family, right when you need the money the most as the medical bills pile up. But even when your illness does not leave you housebound, you probably still wrestle with the question: How do I juggle working a 9-to-5 while managing a chronic disease?
The Challenges of Working with Chronic Illness
Living with kidney disease, chronic Lyme or heart problems limits what and how much you can get done in a day. And that’s a problem in a culture that’s focused on constant productivity and celebrates hustle.
What’s more, working with chronic illness comes with a lot of uncertainty. You never know when you’ll have a good or bad day. Symptoms can flare up unexpectedly or tend to worsen once a simple cold pops up. And it’s not just the chronic pain or side-effects from your meds that can make it hard to focus on your tasks – physical illnesses are often accompanied by cognitive problems like brain fog, poor memory and attention span.
But obviously, that doesn’t mean that you are lazy, difficult or incapable! It simply means you need support and adaptations to function well at work.
And let’s not forget that living with chronic illness brings some benefits work wise too. Maybe being sick has made you more flexible and resilient, or realigned you with your purpose in life. Maybe, like me, your planning skills, patience and empathy have evolved as a result of dealing with hardship. Even if you cannot put in the work like you used to, you still have value to contribute.
Even if you cannot put in the work like you used to, you still have value to contribute.
So can you have both a chronic illness and a career?
Apart from the fact whether you want to work (again) out of necessity or ambition, the answer to that depends on so many factors. Not just the kind of illness you have and how severely it impacts your everyday life, but also your previous education and work experience. What’s more, can you get back to your old job or does your chronic illness force you to explore a whole new work field?
No matter your unique situation, here are 5 general things to consider about juggling a career with chronic illness.
5 Things to Consider about Chronic Illness & Careers
There are so many variables involved in working with chronic illness that it’s impossible to give practical tips that work for everybody. What’s more, I’m writing this from the Netherlands, a country that no doubt has very different legislations, workplace culture and customs than for example the United States or Japan.
That’s why I’ll be focusing on the psychological side of things – the questions you could ask yourself, the issues to consider and some general ideas on how to overcome the obstacles of having a chronic illness and a career.
1. Listen to your body and your capabilities
Living with chronic illness can be like walking on thin ice: one small crack and the ground disappears beneath your feet, leaving you trying to keep your head above water. Neither you and your family nor your boss will be happy if overexertion at work causes that metaphorical crack. So one important aspect to consider about working with arthritis or COPD is the stability of your condition.
Is your illness under control and can it be managed well with medications and lifestyle changes? Or do (new) symptoms pop up unexpectedly? And what kind of symptoms do you have to deal with? As annoying as nagging pain and brain fog can be, you’ll have to take different measures when you could face life-threatening situations at work, like severe allergic reactions, diabetic hypoglycemia or a heart attack.
Of course you can’t fully control your health, but it’s still helpful to make a rough plan to prevent flare-ups and exertion, and how you or your coworkers should act when medical emergencies occur. Perhaps you can consult with your company doctor or the emergency response officer to protect your health at work. It’s also key to learn how your unique body works, how to practice self-care and the art of pacing to manage your illness well in the long run.
Another thing to keep in mind is the effect that medication may have on your ability to drive or work with machines. Some medication like opioid pain relievers, benzodiazepines and other prescribed pills can cause drowsiness, blurred vision and slowed movement. That doesn’t have to be a problem if you sit behind a computer, but can interfere with working as a delivery driver or operating a fork lift.
With that in mind, can you still safely do your work with your condition? It’s probably easier to keep your sales job with asthma than it is being a carpenter with a muscular disease. Even if you could continue your old profession, do any changes need to be made to your job description because you can no longer perform certain tasks? Go over your standard to-do list and note which adaptations would have to be made.
And finally, what does working mean to you? If you live in a country with little social security, earning a living is pure necessity, chronic illness or not. You need food on the table, a roof over your head and money to pay those medical bills. But many people who can no longer work due to illness also struggle with a feeling of unfulfilled potential – the knowledge that you could do and achieve so much more if only your body and brain would cooperate. If that’s the case for you, it might be inspiring to see examples of people who’ve found their own unique way to thrive despite of their chronic illness. A Chronic Entrepreneur features stories of people who are thriving in business despite fibromyalgia, ulcerative colitis or metabolic muscle disorder.
2. Know your rights
As dull and daunting as it may sound, it’s important to learn about the legislations in your country, or even your state. Many modern countries have social benefits and allowances, disability acts and employee assistance programs. How does your situation fit in? A few things to get clear:
- What are the requirements for social benefits, and do you qualify?
- If you are on welfare, are you allowed to earn a side income, and if so, how much?
- If you are able to work, which rights do you have to ask for workplace accommodations, reduced hours or remote work?
- What’s your company’s policy on sick leave, hospital visits during work hours and longterm disability?
If you struggle to figure out the rights and obligations of your specific situation, don’t hesitate to ask a friend for help of seek advice at a (free) legal services counter or the national employee insurance agency.
Accessibility is not a luxury, it’s a human right.
3. Finding the Right Accommodations (At Current Job)
Chances are that, even if your condition is stable enough to return to work, certain adjustments have to be made in order for you to be able to do your job well. Maybe you need an ergonomic workstation to avoid worsening of your symptoms or screen-reader software to work around visual impairment.
Thankfully and rightfully so, disability acts in many Western countries require employers to make reasonable accommodations for their workers. But what does that look like in practice and how do you start making these arrangements?
- Firstly, clear communication with your boss and perhaps close coworkers is key. Even the most compassionate people cannot guess exactly what you can and cannot handle. So being open about practical problems you run into could prevent exacerbation as well as annoyances building up over time.
- Also ask yourself, what would an optimal work environment look like? Do you need adjustable chairs and desk to reduce pain? Would quietude (from noise canceling headphones, for example) help you focus on days with bad brain fog or sensory overload? There are more aids and tools available to help you function well than you might think. For example, in her Instagram Reels, Cheryl Crow showed how a freestyle detached keyboard and a vertical mouse made her computer set up so much more arthritis-friendly. You could ask an occupational therapist for advice on how you can do your work in an ergonomically way in your personal situation.
- However, the adaptation that most chronically ill people want the most, has nothing to do with ergonomics – it’s flexibility. Because you never know how you’re going to feel one day to the next, and urgent doctors visits might be a regular part of your life, flexible work hours, a self-paced workload, frequent breaks and/or working from home one or more day a week all make it much easier to be productive. See if you can find common ground between what you need and what’s realistic for your employer.
- Don’t feel bad about asking for accommodations you’re legally entitled to. Accessibility is not a luxury, it’s a human right. It’s in everybody’s best interest that you’re able to function well, today and in the long run.
4. Getting a New Job
Whether you’re trying to find a more fitting job or you’re returning to the workforce after a long absence, it can be stressful to look for a new job when you have health problems. Because unfortunately, there’s still stigma around hiring people with disabilities and chronic illness. That’s where Chronically Capable comes to the rescue. Chronically Capable is an organization that helps talented professionals with chronic illness or disability find flexible and/or remote work opportunities at companies that care. Community members receive personalized job opportunities that fit their unique needs and abilities.
While searching for a new job, also look into terms of employment like accessibility of the building, time-off policies and long-term disability plans. For example, how does the company handle sick days and doctors visits? As awkward as you might feel bringing this up, it’s better to know these protocols in advance.
That’s all great when you can return to your previous work field, but what if your chronic illness forces you to make a career transition? Ideally, your job is at the intersection between your skills, your interests and your current physical and cognitive capabilities. But obviously, that’s not the case for everyone. If you’d like to explore new career paths within your limitations, you could ask a career coach for (online) advice.
5. Becoming Your Own Boss
Flexibility is often key to having a career with chronic illness. That’s why running your own business or being a freelancer can be ideal when living with health problems. After all, you’re probably more in control of your work hours, so you could work around bad days, hospital appointments or therapy sessions. And what’s more, maybe you’ve uncovered new passions, hidden talents or unmet needs in society thanks to your illness.
But the downside of being your own boss is that you carry the full responsibility. There’s no one around to cover for you or to help you out. When you’re seriously ill or the breadwinner of your household, that weight on your shoulders may be too stressful or even worsen your health.
If you’d love to learn more about making entrepreneurship work for you, having an accessible business and protecting your boundaries, take a listen to the Spoonie Entrepreneur Podcast.
Whether you can have a chronic illness and a career depends on your unique situation: your health condition, your work field and employer, your home life, the social care system of your country. You can find plenty of inspiring examples of people pursuing their passion despite their illness, but it’s not always that easy.
Sadly, there’s no one-size-fits-all advice that can help you manage both your health and a job. The best thing you can do is listen to your body while following your dreams, even if you can only take baby steps. You still have talents, skills, wisdom and value to share with the world.
What are your thoughts on and experiences with combining chronic illness with a career?
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