In Doing a PhD in Half the Time, Sarcozona discussed the role of academic institutions and individuals in managing expectations around productivity with a chronic illness. Many of the ideas about work with faculty to prioritize tasks and adjust workloads based on having a chronic illness might work well in an academic environment.
Yet while many who are working towards a doctorate do so with the plan of staying in academia, many others will find themselves (by choice or chance) working in the world outside of it. Can the same ideas easily apply as easily to post-graduate employees working in private industry or government institutions?
I don’t entirely know the answer to this question, but I do know two things:
1) My own on-the-job experience as someone with a chronic illness who lacked a manual on how to handle it was disastrous, and
2) We live in a culture where our workplaces are not always geared towards accommodating many human wants and needs – including those of the chronically ill and disabled.
PART 1: A PERSONAL STORY
How Chronic Illness Interfered With My Job – And My Life
Due to a long bout with chronic illness, I am currently not working. But before this, I had a job where I did not disclose my diagnosis because stigma was attached to it. A stigma compounded by the fact that, like chronic fatigue syndrome, some people don’t believe the diagnosis is a real condition.
During this job, my condition flared up and relapsed. Big time. I was out sick a lot, in the hospital a couple times and had several batteries of tests and frequent blood draws, all of which affected my schedule. Sometimes, I’d end up in the ER in the middle of the night on a weekday, in pain, and remain there until the sun came up.
From a small white room amid beeps and the distant clatter of carts, I’d call into work sick and get a doctor’s note for my absence, written to avoid explaining I’d been in the ER. If I had told my employer that not only had I been in the ER – but I’d been in the ER again – questions would have inevitably arisen as to what was so serious that it would have landed me in the ER more than once.
On a regular workday, there were times I would show up at work at 9 am, and by 2 pm I was having trouble staying awake. I’d slump over my keyboard and catch myself nodding off, then try to get up and make some coffee.
Other times, I never made it that far. I just closed the door and laid down on my office floor. I slept, half in, half out of consciousness; always mindful that at any moment someone could call or knock.
I continued to work around my setbacks as much as I could, trying to adapt, to cram in my work before the 2 pm crash set in. But as time went on, the situation was only getting worse… I made progressive changes to continually adapt to my “new normal”, yet seldom stopped to ask myself if this was really okay.
When I found I could no longer stand on the train ride home, I did everything I could to stake out the first seat near me that emptied on an overpacked car. In the morning, I began positioning myself so I’d be at the end of the train where there were more empty seats. Later I began scoping out window seats so I could ball up my coat, put it against the window under my head, and pass out until I got to my stop.
As things progressed, they began to affect more than my work life. I began changing my lifestyle in order to conserve more energy for my job, and use less energy and time for everything else. It wasn’t hard, as I found the energy and time that was required to go out after work wasn’t even there any more.
I initially went out to lunch at different restaurants with coworkers and sometimes went out for a drink after hours. But over time, I withdrew from such socializing and started packing more lunches to eat in the office rather than a restaurant a couple blocks away. If I forgot lunch, I would pick up takeout from a cafe across the street so I could bring it back to my desk, where I could eat alone in silence. Or even on the floor, propped up against the wall. I stopped going out after work to spend time with friends at clubs, movies, and other events. I took my laptop home with me, and if I was thinking clearly, I’d try to work remotely. On the weekend, instead of working on some project around the house or going out for a bike ride or hike – I’d try to get done some of whatever work I hadn’t done during the week because I had been too sick or in pain.
Doubts About Disclosure And The Worst Outcome
With each move to accommodate myself on the job, I internally debated the value of disclosing my illness to my employer. I asked myself if it would help to disclose my illness or if it would do harm. And each time, I came up with reasons why I couldn’t do it.
I thought that by disclosing my chronic illness, I would be stigmatized; that both my manager and coworkers would treat me differently. I was concerned I’d get reassigned other work which was less suitable or of less value. I was concerned I would be given fewer opportunities in the future.
But I was equally concerned that even if my disclosure was accepted, that there would be no way to adapt my job so that I could continue working. Either I would have to become the employee who fit an image of what they wanted me to be or I would not have a job there at all.
As time went on, even if I did my best when I could, the decision regarding what was going to happen was made for me. I was not in the office enough. I missed meetings. I came into work late or called in sick. My project timelines kept shifting. It was clear that I was let go because I wasn’t performing and I could not and did not meet my deadlines. The official story is that I was not a good match for the job. Realistically, though? I was not a good match for ANY job, and it took some time for me to see that I was too ill to work at that point.
Before I realized just how much my illness had an impact on my life, there were many questions all tinged with self-doubt about the loss of my job.
Did I lose my job because I wasn’t viewed as team player due to not being in the office enough and actively engaged? I wasn’t in the office because I was out sick, at appointments, or in the hospital. And even when I was back in the office, I had to pace myself and refocus on my work. I remained glued to my desk and tried to encourage team members to come talk with me – rather than walk down several corridors to see them; rather than appear to take initiative in approaching them. But anyone not knowing chronic illness was the cause of my absences and reluctance to circulate around the office could have viewed me simply as flaky, maybe socially awkward, or worse – lacking commitment to my team based on my behaviour.
Did I lose my position because I truly wasn’t a good match for the job? I thought I had the technical skills needed, but that was only one aspect of the job. At times I felt like my manager assigned tasks that should have been done by three people and that I should have led a team, but it all fell to me to make things work. If it was not a not a good match because I couldn’t do the work of three people, then it wouldn’t have been a good match even if I were well. Sometimes my manager would ask me to talk to another department’s manager and inform me that I would be collaborating with their team as well. Their requirements made it difficult to prioritize my tasks, but was it difficult to prioritize these tasks and complete them because of the nature of the job – or was it difficult because I was too fatigued, in pain, and cognitively impaired?
Did I lose my job because I seemed out of it in afternoon meetings and sounded confused during conversations later in the day? I don’t know, and I’ll likely never know, but I was aware that as the day wore on, the more fatigued and unfocused I became. I was either slow to answer questions and would take longer pauses between statements – or I would ramble and veer sharply off-topic without noticing I’d done so. Others may have thought I was drunk, taking drugs, or had a psychiatric condition – all of which are also stigmatized, but none of which were the case.
Job Loss And A Loss Of Confidence
Why someone leaves their job depends on many factors. But up until this point, it had been pretty clear why my previous jobs had ended. I worked for a few years through an agency on time-limited projects; I was self-employed and had my own business but decided to work for someone else. I had advanced beyond what my position and the company could offer me and I left to take a new job elsewhere.
These reasons for ending previous jobs were all reasons well within my control. Every decision I made was my own.
This? This was different. This was the first time a job ended because someone else decided it was time for me to go. This was the first job I lost because I was incapable of meeting deadlines and could not keep up with the demands of the job on a daily basis.
Since I lost this job, I’ve felt like a complete failure. And realistically, when I reflect on how little I eventually ended up doing and how burned out I felt between managing the task of being ill and managing my job, I think that if I were an employer, I wouldn’t hire myself either.
I’m at risk for being too inconsistent, too unreliable due to the demands of a typical full time office job – whether I’m doing research or whether I’m doing project management.
I’m concerned in general that any attempt at a job in the future is going to result in a repeat of the same situation I went through with my last job. With a lack of consistent performance and availability, people will think I’m flaking out – when really, I am just too sick to do anything that requires extended regular commitment.
Then, even if I can occasionally do something now on a voluntary basis – such as help with an online support group for others with my condition, fix a broken laptop, or enter a photography contest – I have days where I wonder if I even should be doing what little I’m doing out of concern it will end up being too much and I’ll fail to do what I set out to do next.
I’ve not only lost my confidence in doing what I used to do, but after being so seriously ill for a few years, I’ve also questioned whether or not what I was doing is what I should have been doing, anyway.
The impact of chronic illness on my life has been so profound that I’ve wondered if taking a job to improve the healthcare system for chronically ill individuals wouldn’t be a better fit. Going back to doing what I was doing seems less important as time goes on. I was blindsided by illness, and the experience changed me and changed what I began to see as important; it changed my priorities and to some degree even my values and personality.
Academia vs Non-Academia
After my experience, I’ve wondered what I could have done to prevent what happened to me. Sarcozona’s ideas for how to set realistic expectations for being productive with a chronic illness while working on your PhD sound excellent, but at the same time they work much better in academia where there’s more infrastructure to support disabled students and faculty, often more flexibility and downtime in one’s schedule around the demands of classes and meetings. Working in private industry or even government institutions may not provide as much flexibility and support as one can arrange within an academic program.
How a chronically ill or disabled employee’s situation is handled at work depends on numerous factors. It depends on your workplace culture, your manager’s attitudes and expectations of employees, the terms of your employment, how flexible your hours can be, how much paid and unpaid time off you are entitled to, whether or not you are a W-2 employee or a 1099 contractor who occasionally shows up on site, and the specifics of your job.
If you’re working at a start-up company, you are often expected to put in long hours of work every day without a break and work longer work weeks until the company gets off the ground. In a start-up environment, accommodating those who are chronically ill and physically unable to work long hours is an immediate mismatch; one won’t last long in this kind of job.
If one works in a teaching job, one may have to stand for a few hours and move around a lot, but have long blocks of time in between to sit at a desk to grade papers in the office or at home. If one works in the medical field, one may also have long hours on their feet on swing shifts and have trouble keeping up as a nurse or doctor, but have an easier time working in medical records or as a radiologist who waits for patients to come to them.
Many jobs provide challenges to those who are healthy and able-bodied, and many jobs will require accommodations if someone chronically ill or disabled is to do them, but some jobs by their nature will not be suitable jobs and cannot be made suitable jobs for employees with specific limitations due to their illness or disability. One can’t expect someone to suit up in heavy gear, climb up a ladder, and put out fires when they have trouble carrying their laptop or even filing papers.
In my situation, I began with the kind of job I normally could have done had I not been ill, though in hindsight I still don’t think one person should do the work of three people anyway. (I think that overwork could contribute to developing chronic illnesses, so I’m reluctant to support any model involving long hard hours due to the potential health cost.) And given the deterioration of my capabilities over time, I would have had to leave my job of my own accord if I hadn’t been shown the door. It just would have felt a little better if the decision was my own and not someone else’s.
Article kindly submitted by Camp Other (@CampOther). Visit Camp Other’s blog on Lyme Disease, Science and Society.
Got a story about navigating academia (or related fields) with a disability or chronic illness? We’d love to hear it. Email us at firstname.lastname@example.org.