I have been self-employed since 2013, and for nearly half that time — three years, to be precise — I have been living with chronic illness. When I was first diagnosed, I had no idea how I would continue with “business as usual.” Because that no longer existed: there was no way my body could keep up with how I was used to working and living.
Because I’m my own boss, I could redesign my business to support the new pace and flexibility I need to take care of myself. I know I’m in the fortunate minority to have been able to build a work life that prioritizes my health and wellness as much as possible.
Nonetheless, my experience is eye-opening. The truth is that the work world has not made space for the chronically ill. In fact, it can be downright hostile toward us. In learning this, I’m left with a big question: How can people living with chronic illness find fulfilling work that allows them to prioritize their health and wellness?
Face the facts
Chronic illness is more present than you may realize. According to the National Health Council, 133 million Americans are affected by “incurable and ongoing” chronic disease. At nearly 40%, this isn’t an insignificant portion of the U.S. population — and it has been suggested that by the end of 2020, 50% of Americans will live with at least one chronic illness.
Twenty-five percent of Americans — myself included — live with two or more chronic conditions. The U.S. National Center for Health Statistics defines chronic disease as a condition that lasts three months or longer. There are literally hundreds of conditions that fall into this classification, such as the more prevalent arthritis, diabetes, depression, and heart disease, as well as the lesser known or acknowledged endometriosis, fibromyalgia, irritable bowel disorder, migraine, and trigeminal neuralgia (TN).
Because average life expectancy has increased, people are living longer with chronic illness, which calls to mind some pressing concerns. One is a universal question we all confront, irrespective of our personal health condition: How will we afford healthcare when we need it?
This question takes on a whole new reality when you live with chronic illness because your healthcare needs can wreak havoc on your finances. A 2019 study noted that approximately 530,000 bankruptcies are filed annually in the U.S. because of “debt accrued due to a medical illness.” That is almost 4% of the U.S. chronic illness population.
Whether or not you have insurance, healthcare — doctor’s appointments, tests, medications, treatments — is expensive. Having a job, then, can very well mean the difference between affording your healthcare or not. Late last year, the U.S. disability unemployment rate was noted at 9%, compared to the non-disabled rate of 3%. This number does not adequately capture what the unemployment rate is amongst the chronically ill because many do not qualify for disability benefits.
This data paints an alarming picture: There are health conditions that our bureaucracies do not yet acknowledge as legitimate, life-disrupting illness. The chronically ill can then find themselves in the precarious position of being unemployable because traditional work doesn’t support their health needs and ineligible for benefits to help them when they most need it.
This is yet another dimension to how people living with chronic illness struggle to be seen.
Time to reimagine
So much of work and jobs today exclude the chronically ill because there is little understanding of how to create the conditions that promote their productivity. Not all jobs are suitable for the chronically ill, but this largely depends on the illness itself and the individual experience of that illness. No two experiences of an illness are exactly alike.
The issue is not that the chronically ill cannot work — it’s that productivity and work must be reimagined to include people living with chronic illness. And the onus of this responsibility will likely first fall onto the shoulders of the chronically ill themselves.
I had to reimagine how to work when I was diagnosed with TN. I knew I needed my business model and day-to-day schedule to accommodate a slower pace and more rest. This impacted my productivity, but not in the way I expected. With this new working style, I actually found myself to be more meaningfully productive because I’m more discerning, organized, and focused about how I spend my time and how I get work done.
But in stressing my unexpected productivity, I feel uncomfortable because of what it implies if I still worked for somebody else. If I was an employee, I can see how easily it could feel like I have to prove my worthiness despite my chronic illness. Though it is my right by law to be given “reasonable accommodation” so that I can do my job, I may feel like I have to prove that I’m worthy of such accommodation. Like my employer would be doing me some great favor and how that could leave me feeling insecure and less than.
But this isn’t a favor. I should not need to prove I am extraordinary or hyper-productive to be extended the same respect and dignity as my more “healthy” co-workers.
We, the chronically ill, want the same thing they do: we are there to do a job and we want to do it well.
Our society sees employment as a way to judge a person’s responsible nature and worthiness. This mindset seeps into us at a young age, usually when we apply to college and absorb the different opinions and experiences of the adults around us. By the time we become adults ourselves, we unconsciously imitate a culture that affirms that our worthiness is positively correlated with our employability.
This is what can make chronic illness additionally demoralizing. If we are unable to find or keep employment because of our health status, then we question our worthiness because we are not living up to society’s basic expectations. What society doesn’t understand is that people live with chronic illness do their damned best to make room for other experiences — such as doing fulfilling work that earns a sustainable income.
My health status hasn’t eclipsed my ambition. I have financial responsibilities and goals I want to honor, but I also want to do work that gives me a rewarding purpose I’m proud of. My diagnosis didn’t eradicate my goals and dreams. Some of them changed scope and shape, but the big, important ones I’ve had since girlhood are still with me and I work on them every day.
Chronic illness and ambition aren’t mutually exclusive. The former asks that I acknowledge, accept, and work with my needs and limitations so that I am better able to honor the latter.
So yes, I may need to work from home and have a flexible schedule, but those aspects of my life don’t disqualify my brain or my heart from participating and contributing to this world.
Looking for a job?
Whether you are unemployed, underemployed, or unhappily employed, finding a new job is overwhelming — especially when you throw your health condition into the mix. Last year, I wrote an article about living with chronic illness and how to find a job that works for you. There are tips and reminders in there that I still stand by. I hope they help you as you figure out what you need and want from your next role.
Recently, I came across Chronically Capable, a recruitment company that connects people living with chronic illness or disability with work from flexible employers. There are jobs from a number of different industries. It’s worthwhile to sign up (it’s free) and browse the listings, if for no other reason than to see what kind of roles may mesh well with your specific health needs.
That self-employed life
Then there’s the option of becoming self-employed. This can mean becoming a freelancer or starting your own business. Working for yourself may be the right option for you to: have the flexibility your health needs, do work you can — and want — to do, make an income, and achieve your goals and dreams. I became self-employed four years before I was diagnosed with chronic illness, and I know that self-employment has been a boon for my health — and life.
That being said, it isn’t perfect. It’s not an easy or light decision to make. If you are currently unemployed or underemployed, you lose nothing by trying your hand at freelancing. But there are two realities about self-employment that are critically relevant if you live with chronic illness:
- You need to be comfortable with making an inconsistent income, at least in the beginning, and how that will impact your health and healthcare-related expenses. These expenses include not only your finances, but also your time, energy, and effort.
- Unless you have insurance through your spouse or your parents, you will have to buy an individual insurance plan for yourself if you want coverage. This can be an expensive commitment if you don’t have a regular income or support system to help you until you do.
These considerations aren’t meant to discourage you. For all their gravity, they go hand-in-hand with the biggest pro of self-employment: you have the autonomy to dictate your boundaries, and how your work will support both your health and your ambition.
If you want to test the waters of what self-employment could look like for you, you can:
- Become a remote, professional volunteer with an organization like Catchafire. You can try out a project — or two — and see if you want to pursue self-employment further. You can choose projects based on organizations and your field of work. You will also be able to see the estimated time commitment, which is helpful when you’re figuring out what’s the optimum weekly workload you can commit to.
- Look at freelance, temporary, contract, and part-time job listings on websites like Chronically Capable, Idealist, and LinkedIn to see what’s available in your preferred field of work. Apply for roles that meet your needs and expectations. (But first figure out what the right job looks like for you.)
- Talk to people you know and trust. Let them know that you’re testing out freelancing in your preferred field of work, and offer your services to them or someone they know who could use your expertise.
This is really about you
If the COVID-19 pandemic has taught us anything, it’s that all the traditional refusals as to why the chronically ill cannot be accommodated at the workplace are baseless fears. Many jobs — and businesses — have been able to continue with employees working remotely. There are challenges, but this time in quarantine is asking the world to reimagine work anyway. The world of work can and must include the chronically ill in its reinvention.
And the data shows that this is in our best interest because there are so many of us! Not doing so can seriously impact national unemployment.
We need to normalize the chronic illness experience so that there’s more understanding, support, and resources available to allow the chronically ill to work on their terms. People living with chronic illness should not be infantilized or dehumanized because they have an irregular health status. We need to invite and value the contributions they make to the world.
If you are an employer, I want you to know that people living with chronic illness are not a liability. We will not take advantage of the accommodations you extend our way so that we can do our jobs well. We want to live full lives and part of that is wanting to have a purpose, to take take care of ourselves and our families, to contribute. This will allow us to feel good about ourselves in ways that extend far beyond our health. We deserve that — just as everyone does, regardless of the challenges they face.
If you live with chronic illness, I want you to know that you are worthy. You live with unpredictable factors daily, but that doesn’t mean that you are less than who you were before your diagnosis or before your symptoms became more acute. The truth is you may not be able to do everything you did “before,” but that doesn’t mean that you won’t be able to find a way to do the things that matter to you most now.
I want you to know that reimagining work begins with you. The world may not catch on as quickly as you’d like. That’s not fair, but the sooner we can recognize that, the sooner we can refocus on what we need and want to thrive.
It’s not easy to figure out what “on your own terms” means. But surely the discipline, discernment, and adaptability that chronic illness requires of us means that we can figure that out.
Do I have to disclose my disability to my employer? What accommodations am I entitled to request? Can I be paid less because of my reasonable accommodation? So many questions might arise as you go through the employment process.
There are simply no excuses for not hiring chronically ill workers. Doing so would detrimentally reduce your available talent pool.
Let’s start by getting this straight: you do not have to disclose anything about your health to an employer. If you wish to disclose, you’re allowed to disclose at any point in time, whether that be during the interview, during the negotiation process, once you’ve started, or even three years into your job.
Living with a chronic condition is incredibly time- consuming. Whether it’s frequent doctor appointments, blood draws, treatment schedules, or taking the time to rest, our days are jam-packed to the brim. I know this first hand as I’ve struggled with Lyme disease since 2015.
One of society’s biggest misconceptions is that people living with chronic illness are not able to work. We can — we just have to reimagine what that looks like.
At Chronically Capable, we’re building a platform that does not discriminate - based on race, gender, disability, or even health conditions. Having been in constant contact with employers and job seekers during this time, we recognize how much work there is to be done.
This past week, the internet has been flooded with news surrounding remote work, as employers are flocking to adapt and train their employees to work from home. It’s funny to me that it took a global crisis for businesses to realize that it’s not expensive nor difficult to allow their employees to work remotely.
It was my last summer before my senior year of high school when I had my first episode after a ride at the county fair...