According to the CDC, "about half of all adults—117 million people—have one or more chronic health conditions. One of four adults has two or more chronic health conditions." This means many of our coworkers deal with chronic illness daily, and we've gotten really good at hiding it. If I hadn't told my teammates, I'm not sure that they'd know I've got Crohn's disease and arthritis; I can mask most of the symptoms and have figured out how to get work done around them.
My job has been a tremendous blessing. Working in web development means that I can get most of my job done asynchronously. I'm fortunate to work with flexible and understanding people who trust each other to get work done. As a manager, there are parts of my illness that are hard to work around (lots of meetings that are better in-person), but generally my job in tech has allowed me to not stress out about the work implications of my disease.
I reached out to three other folks in our industry who have chronic illnesses to ask them to share their stories. I'm so appreciative that Lyza Danger Gardner, Mat Marquis and Nicholas Zakas have all been willing to participate. It's important to note that lots of people with chronic illness don't want pity or concessions—and we definitely don't want to sound like we're complaining, and so we just try and barrel through our workday.
I should also note that this post only reflects four individuals' experiences with chronic illness; it's not intended to represent the entire spectrum of ways illness can affect someone. Rather, I'm hoping to illustrate how our web development jobs are impacted by chronic illness, and how these kinds of jobs can also empower people who may not be able to work in traditional fields.
What's your chronic illness? How does it impact your day-to-day?
Crohn's disease, Rheumatoid-like arthritis, migraines, and suppressed immune system due to medications. "Day-to-day things are generally not too bad. Sometimes I have to work from home unexpectedly if I'm feeling unwell, but I work on a great team that has great tools for working in distributed or non-conventional ways. Doctor appointments average about one per week but sometimes I can be running to three, four doctors in the course of a single work week. Specialists require scheduling sometimes months in advance, meaning I occasionally have to make an unpleasant choice between a long-standing doctor appointment and a client meeting."
Lyme disease and its multitude of symptoms, including fatigue, nausea, and body aches. "I'm rarely able to leave the house, so I'm physically cut off from my co-workers. We've all had days where we felt lousy and just wanted to hide from the world. I have that day every day, and the last thing I want to do is broadcast my sick-looking face to coworkers. I don't want them to see how I'm dry heaving in between things I say, the rings under my eyes from not having slept, or how pale I look. If necessary I do phone conversations, but I find them incredibly draining and need to limit them to a maximum of two hours a day."
Ehlers-Danlos syndrome. "I very rarely dislocate anything badly enough that I end up completely out of commission. The trouble is that lots of partial dislocations leave me sore and it puts a lot of wear and tear on my skeleton. My hands hurt basically all the time—not in an unbearable way, but worse than last year, which was worse than the year before. They hurt right now. It's distracting, but not so distracting as knowing I'm operating under a time limit. Eventually it might not be bearable. I keep myself moving with irresponsibly strong coffee and handfuls of ibuprofen throughout the day—every day—but that isn't tenable in the long term."
Crohn's disease, migratory arthritis, and suppressed immune system due to medications. "Day-to-day I'm mostly unaffected, but my arthritis sometimes makes it really hard for me to get to work (as most subway stations, including the ones in my commute, don't have elevators). Occasionally it'll also be hard to type. Traveling for presentations can get really hard - speaker dinners mean I have to be clear what I can/can't eat, and often air travel triggers my arthritis. When I have a Crohn's flare, I'll be mostly unable to eat, and I'll be in some amount of constant pain for a few weeks; but so long as I mitigate my stress levels, I can usually avoid flares."
How does working in web development help you manage your chronic illness?
"Although I've considered my job to be more about interacting with people than code, working with code makes it much easier to stay productive. Since I've been home-bound, I've refocused my attention on writing code instead of filling my days with meetings. That focus has been both useful and therapeutic. I find it easy to get swept up in the story of my symptoms ("ugh, I feel so horrible, life is horrible!") and so having problems to focus on solving keeps my mind away from the overtly physical discomfort I'm feeling.
"It's also nice that I can keep coding whether that be standing, sitting, or lying down, so long as I have an internet connection. The quiet at home allows me to focus on the work despite how I'm feeling, and checking in with Twitter and various blogs, I feel like I'm still able to keep up-to-date with technological changes."
"Honestly? If I were still swinging a framing hammer full time—lugging fifty pounds of shingles up a frozen ladder, hauling Sheetrock up flights of stairs, whatever—my skeleton would've given out by now. This job with a desk and a chair is keeping me in one piece. It would be easy to write about how I make my own schedule; how I can take a little longer to get in gear in the morning if I need it, or I can take fifteen minutes during the day to run some cold water over my hands and rest up a little. It would be easy to write about how being able to go into a code or writing fugue allows me to tune out the aches and pains for a little while—it does. That's all great, and I'm incredibly fortunate to have those kinds of privilege."
"Usually I'm well enough to work synchronously during these icky spells, as long as I have the use of my hands (arthritis has at times made typing challenging and I have a hard time concentrating if I feel queasy or have a bad headache), but if I'm not able to work during normal hours, it is possible for me to get good work done, later, asynchronously, and my coworkers are sympathetic.
"I'm also extraordinarily lucky in that I'm in a position where I can be my own judge of my productivity: if I feel like crap, have medication-induced brain fog or otherwise can tell I'm just not getting stuff done effectively, I can (usually) stop and take a nap or a breather before trying again. As long as I deliver (or over-deliver) to deadlines and am supporting my part on my team, this works out."
What tools do you use to get your job done?
"I think in the past few years especially, the systems and processes for getting our type of work done have matured in ways that make distributed, asynchronous teams increasingly feasible and efficient. The workflows of development teams are becoming more universal. New tools have come out that cross the synchronous/asynchronous boundary and help teams stay in touch (e.g. Slack or Hipchat, or meeting tools like Lucid Meetings). Interfaces for things like, say, Github issues have become gorgeous and streamlined for having well-organized, time-shifted conversations with various team members. My work life is totally portable. I'm like a minstrel. Anywhere I go, as long as I have my laptop and some modicum of connectivity, I can be productive.
"I love travel—no, really, it is my favorite thing to do in the whole world—but it sometimes pretty much kills me. Imagine the worst hangover you've ever had while simultaneously having the flu and appendicitis and that's kind of what it's like when I have jetlag. I now mitigate this by arriving an extra day or two early for international events—even if it has to be on my own dime—so that I can suffer through the worst of it holed up in my hotel room."
"While tons of good software allows me to have an asynchronous work day, a cane, knee braces, and wrist braces also help me get through my most arthritic days. Couches at work allow me to stretch out a little when sitting upright or standing is too tough. On days when I can't make it into work, I'm thankful that Etsy's invested in a video conferencing system that allows me to hold basically any meeting remotely."
"I rely a lot on email and IRC for communicating with my team. It's definitely not the same, but it's the lowest-stress way for me to stay in contact with them. Unfortunately, it's also the least effective way to resolve complex issues.
"My energy tends to wax and wane throughout the day, so I need to limit the amount of time I spend at the computer. I use a program called WorkPace that is meant to force you to take breaks to reduce the likelihood of RSI from too much computer usage. It works equally well for limiting the total amount of time spent and forcing me to take breaks. I often works in spurts: 40 minutes of work, then lie down for 10-15 minutes."
How does this affect you, personally?
"The very worst thing about any of this is when I feel like I've let people down. I've had to miss important in-person business meetings. And during a rough patch in 2013 I had a situation in which I felt so sick I couldn't give a presentation I'd been flown to Europe to give. That was mortifying. There's that awful sensation that people think I'm flaky or unreliable. I sometimes have to work weekends or miss fun events because I need to catch up on work I missed when I was feeling yucky.
"I try to tell myself it's all right, that I deliver what I say I'm going to when I say I'm going to, but every time I have to say, again, 'sorry guys, I don't feel quite well enough to come in today' I cringe a bit inside."
"What gets me is that every year I get a little slower, I'm a little more sore, there are a few more typos, and I start flinching on every keypress a little earlier in the workday. I don't know how that's gonna work in a few more years.
"I scrape up a lot of motivation from all this. There's a lot I need to get done. I want to make this industry better, then I want to scratch my name into the side of it, and the hell with anything that's gonna try to keep me from doing it—even if that thing is my own lousy skeleton. While I don't know how things are gonna work in a couple of years, I'll damn sure get something figured out. If my hands are gonna stop working completely someday, the last thing I'll do with them is build some new ones. I'm from Boston: if we didn't do things out of spite, we'd never get anything done at all."
How can your coworkers help?
"The biggest help is really just to say 'hi' over IM/IRC. I think people feel bad about bothering me with non-critical stuff and want to respect my privacy, but in reality, I'd love to hear from people more often."
"Kind of a non-answer, I know, but I really don't need a lot. Putting up with my constant 'I'm getting old' griping is more than enough. It's just that I'm getting real dramatic in my old age, y'know? And hey: worst case scenario, Bocoup has one hell of a robotics department."
"My teammates will check with me about restaurant menus before a team outing to make sure there's something I'm able to eat. Due to my arthritis, I'll ask my coworkers if we can take the elevators instead of the stairs, but even better, sometimes people know that the weather's changing and volunteer that we take the elevator before I even mention it."
"The biggest thing people can do to help me is to make me feel okay about not feeling okay sometimes. I carry a lot of guilt around and I feel like a dull, broken record in terms of how often I have to say I feel sick or something hurts (I've learned to contain my whining quite a bit! For every outward physical complaint I make, there are five or ten smaller hurts that I don't even bother to mention) or that I can't be in the office. It really helps when people take a moment to make me feel like I'm not a drag or a liability, but that I'm still delivering the goods!"
As I'm finishing up this post, I want to call out that we all have "stuff", even if it's not chronic illness. As Ian Maclaren probably said, "Be kind, for everyone you meet is fighting a hard battle." I'm sure that you have days when you don't feel like you're totally yourself, days when you are angry at your body, or days when you realize how fortunate you are for the support of those around you. We all have moments when we feel a deep desire to just feel like ourselves, whatever that means to each of us. We should give a huge shoutout to every person who helps their coworkers get through tough days, who creates a safe space for those around them to name what they need, and who understands when we have "one of those days". I'm so thankful for this industry as it empowers us to get work done, and to support each other.