Two decorative pillows give me reason to pause each workday morning as I make the queen-sized bed that I share with my wife, Jennifer.
These blue- and teal-flowered shams carry no sentimental weight in my heart. It’s the ritual that prompts a long list of daily tasks, challenges and opportunities that await me.
Me. A person who:
Works remotely as a senior writer for a leading higher education enrollment management company
Lives with the realities of multiple sclerosis—a chronic progressive disease of the central nervous system
In one simultaneous swoop, I position both pillows on our respective sides of the bed and envision all that I will need to accomplish this day. All of it will be done and in the rearview mirror by the time I’m able to remove the puffy accents and go to sleep for the night.
It’s at this moment that I pause, mentally strategizing my first few tasks of the morning and reminding myself of the blessings that come with working remotely in the home office across the hall from our bedroom.
An even playing field for people with chronic conditions and disabilities
It wasn’t always like this for me. For almost two decades, I commuted to a university communications job—all the while dealing with the challenges my disease has dealt me.
I didn’t specifically seek out remote work to accommodate my life as a person with MS. This is simply how the company I work for was set up long before the pandemic hit. Its headquarters are in eastern Iowa, but a sizeable percentage of employees are distributed throughout the United States.
Yet finding this opportunity has been a boon for me here in the middle of Michigan’s lower peninsula.
I have lived with MS for nearly 23 years. While it isn’t known what causes the disease, it is believed to be an autoimmune illness where something triggers the immune system to attack the central nervous system.
"Remote work has made it easier for people who have a chronic illness to stand out for the work they do rather than the disease they have."
This, according to the National Multiple Sclerosis Society, leads to damage of the myelin—the protective layer insulating wire-like nerve fibers—and disrupts signals to and from the brain. “This interruption of communication signals causes unpredictable symptoms such as numbness, tingling, mood changes, memory problems, pain, fatigue, blindness and/or paralysis.”
My primary symptoms include high levels of fatigue, increased bladder frequency and constant numbness in my hands and feet.
But unless my coworkers follow me on social media, check out the website and podcast that Jennifer and I host (A Couple Takes on MS) or scroll through my LinkedIn posts, they’d have no idea I am living with MS.
This is because remote work has made it easier for people who have a chronic illness to stand out for the work they do rather than the disease they have.
How remote work has helped me personally
• Foregoing fatigue through flexible scheduling 🗓
Yes, I still need to track at least 40 hours for a full-time workweek, and the hope/intent is that I am available during standard working hours (8 a.m. to 5 p.m.) to connect and collaborate with colleagues. But the keyword here is ‘flexible.’
Regular posts in interoffice chats and message boards help to keep everyone informed of any late arrivals, early departures and time away from standard schedules. This increased flexibility in everyone’s workday also gives us the ability to work when we can best maximize our productivity. (See what I did there? I said ‘everyone,’ as in all employees regardless of whether they’re living and working with a chronic condition.)
• Making multiple guilt-free trips to the restroom 🚽
TMI? Perhaps, but we’re all working adults, right? Here is the caffeinated conundrum that comes with needing high levels of coffee to fight off the aforementioned fatigue. This compounds to multiple trips to the restroom for any coffee consumer, but throw an MS-impacted bladder into the equation, and you’re functioning at a completely different frequency.
Not that I’m wearing out a path between our home office and restroom, but the number of trips I make somedays are as unpredictable as the disease that causes this issue in the first place. Now, imagine if I was taking these brief breaks in an onsite office. Coworkers likely would notice (“What’s up with Digmann and all his trips to the restroom?!”) None of my current remote work colleagues sense there is any issue whatsoever...until I’ve rambled on about it in this Founders post, of course.
I’m able to work comfortably and productively without feeling self-conscious or stressed.
• Speaking my way out of the numbness 🗣
You know that tingling sensation you sometimes get? The one that happens to most of us when sitting for too long or folding our legs in a way that reduces blood flow? MS-induced numbness in my fingers makes my hands feel like they’re asleep. All the time.
I recall my fear when first diagnosed: How am I going to write and type for a living if my hands are inexplicably numb? I soon realized that as long as my hands were properly positioned over the keyboard, I didn’t actually need to feel the keys.
Just move your fingers, Dan.
That method worked reasonably well until adaptive technologies went mainstream. Suddenly, smartphones included voice-recognition software and apps. With this, I have trained my iPhone to recognize my voice, and can speak the words for texts, emails and projects at a rate that rivals (and often surpasses) the speed at which I once was able to type.
I’m able to work comfortably and productively without feeling self-conscious or stressed.
Because I am completing this all from the comfort of my home office, my loud, clearly articulated voice doesn’t disrupt coworkers in neighboring cubicles. Not only that, nobody knows that I speak my words almost as much as I type them. (Sssh! Don’t tell.)
A work in progress: hiring remote employees with chronic conditions and disabilities
With three simple examples, I’ve demonstrated how remote work is opening doors for people living with chronic conditions and disabilities to secure meaningful employment.
I have MS, but you’d never know it just by looking at me. Some people who have this disease use assistive devices like a walker or wheelchair for mobility, but I am living with an invisible illness. As mentioned, none of my coworkers would have any idea I am living with MS unless they Googled me or followed my social media.
In fact, according to Chronically Capable, 70% of disabilities are non-visible.
This is why I’m encouraging businesses and corporations to pay attention to employees like me who are living—and many of us are thriving—in spite of having a chronic condition or disability.
You will thank yourself for expanding your eligible pool of productive and talented team members.
And paying attention to people who have chronic conditions goes way beyond considering them for employment. This also includes being mindful of creating a culture that is supportive of their needs.
The Harvard Business Review article How Managers Can Support Employees with Chronic Illnesses notes thatnearly 60% of adult Americans are living with at least one chronic illness, and it offers insights into strategies to help leaders better understand and support employees with chronic illness.
The authors explain: “The chronically ill often become masters of self-awareness and energy management; in order to continue to do their best work, they’re forced to know and advocate for their well-being needs. Their experience can offer valuable lessons to colleagues—those who are currently ‘able’ and those who may be confronted with their own chronic illness in the future.”
Oh yeah, I’m also part of an entirely different demographic remote employers should be focusing on: caregivers.
I am the primary caregiver for my wife, Jennifer, who is living with a more progressive form of MS. Remote work has made so much of my role as her caregiver possible, yet unless my colleagues paid attention to our online activity, few would know that I hold this vitally important role in our home life as well.
But that’s a story for another day—after yet another simultaneous swoop, when I once again will position the two decorative pillows on our respective sides of the bed and envision all that I need to accomplish.