Workplace accommodations can be a fraught topic - what are you legally entitled to? How do you figure out what’s reasonable? How do you manage the emotions around needing help? I’m pretty happy with how I handle my illness / invisible disability / whatever-you-wanna-call-it at work these days, and thought I’d share some notes on what has and hasn’t worked for me.

My angle on this: I’m American, my experiences are coming from being a software engineer at a tech company. My disability / illness is usually invisible. I appear young and able-bodied. This gives me passing privilege, which is useful in many scenarios, but sometimes a hindrance. (Nobody will offer me their seat on the subway.)

Specifically, I have an autoimmune disorder, and I deal with chronic pain, mobility limitations, a suppressed immune system, and migraines. Usually this doesn’t impact my work: sitting at a desk is a pretty cushy job. Sometimes it does: I’ve had days where inflammation flare-ups in my joints made me unable to use a keyboard.

I’ve spent a lot of time working on skills to make it easier for me to exist in a professional environment. This includes figuring out what accommodations I need, how to ask for help, and what to tell my coworkers when they (understandably) have questions.

Things that have worked well for me:

Stating my limitations / accommodation needs as facts: “I won’t be able to do $ACTIVITY because I have $LIMITATION”. “I’m going to sit down now.” “I need $ACCOMMODATION.”

My limitations are real, and it’s my responsibility to figure out how to communicate them clearly and succinctly. I try to leave as little room as possible for argument or interpretation, and to use the same tone I’d use for remarking on the weather. Keep things polite, friendly, and impersonal. I’m not making a request when I’m talking about accommodations; I’m stating a need.

(Unless I’m actually making a request for something that’s not essential to my job, like “Hey, I would love to participate in $EVENT, can you tell me if there will be $TYPE_OF_ACTIVITY? I have $LIMITATION. Thanks!”)

Don’t try to hide my limitations: because my disability is invisible it’s often tempting to deliberately keep it that way, but this is an antipattern. Example: walking into a very large meeting where all the chairs are taken, and as the room overflows, people have switched to standing in the back of the room. I could also try to stand, but that’s a bad idea. Instead, I will sit on the floor, or - if I think my presence there is actually warranted and relevant to the meeting - I will ask someone to give me their seat. If people look at me funny, that’s fine. I will not pretend to be OK when I am not OK.

Finding compromises: it helps if I can find ways to participate in the purpose of an event or task without doing it identically to everyone else. Do I have to stand during standup? No.

Another example: my department was planning an offsite to a shooting range during a time when I couldn’t comfortably lift…well, anything, really. Definitely not a shotgun. I still wanted to spend social time with my coworkers, though, since I was in a remote office, so I went along on the trip and just didn’t shoot. I didn’t explain myself beforehand to anyone but my manager (maybe I should have? yeah…) and some people were a bit confused. I explained why I wasn’t shooting if they asked. Everyone was good-natured about it. People take their cues from you, if you act like your accommodations are normal other people will tend to react similarly. :)

Relatedly, this often requires me being okay with making my issues visible.

Being unafraid to ask: It’s better to ask for an accommodation and be told “Nope, we can’t do that because $REASON” than to suffer in silence. e.g. I noticed that my back pain was much worse whenever I was oncall, because I had to carry a laptop everywhere for two weeks. The damage I was doing to my back was pretty significant - I’d usually need an entire weekend of bedrest to recover. It took me way too long to realize that I could just…ask…for a second laptop to keep at home, so that I didn’t have to shuttle an extra five pounds back and forth. I felt guilty for asking for a second laptop (??) but once I asked, everything was great. I told my manager I thought it would help, she said “That makes sense!”, I talked to IT, and a week later I had a second laptop. Lo and behold, I no longer injure myself by being oncall.

Participating in planning: If I’m the one planning an activity, or running a meeting, or whatever, I can make it suit me. This means: if I’m facilitating standup, we’re doing it in a room with chairs. (I once worked at a place that insisted we do standup meetings with actual standing once…so I would awkwardly drag a barstool over and scowl at the facilitator…that was frustrating.) My manager can’t read minds, and also isn’t nearly as familiar with my problems as I am, so if I can suggest solutions and help with the planning/logistics, everybody wins.

Talking about my disability: like I’m doing here! I can pass as able-bodied, which means that if people don’t know that I’m sick, they’ll be pretty confused when I ask for accommodations. It’s better for everyone if it’s not some weird secret that takes them by surprise.

Losing the shame: this one is harder, but it’s been important. I’ve cried in front of several of my coworkers; some of them have seen me on the verge of passing out after particularly bad incidents. My illness robs me of the privacy around medical stuff that I might otherwise wish I had. Treating this as matter-of-factly as I can makes it easier for me, and, I suspect, for them as well. When my coworkers ask questions about my condition, I answer as concisely and straightforwardly as possible. This is much easier now that I have a formal diagnosis.

Believing other people: similarly, I try to model the behavior I want. I believe people when they describe their own experiences or symptoms. I remember that it took me a decade to get a diagnosis, and many people have confusing and sometimes contradictory stories about their own conditions. When I’m planning an event, I explicit ask for things like accommodation needs, and I try to take everyone’s preferences and needs into account.

Things that have not worked well:

Snark: I have a really dark sense of humor about my illness that other people don’t share - which makes sense! The line between “totally funny joke about me bleeding out” and “horrifying, triggering story” is really not obvious to people I don’t have a deep personal relationship with. And frankly, it’s probably not professional of me to let that bleed into the workplace. (Heh.)

I do fall back on snark when people start insisting that I can actually do $THING. Memorable conversation: my company was doing a trip to Six Flags. I love theme parks because roller coasters are awesome, but they involve way too much walking for me. One of my coworkers was really insistent on me going, so I finally snapped, “$NAME, I’ll go if you’ll push my wheelchair the whole day!” This was Very Awkward, but IMO I was just surfacing the existing awkwardness: my very well-meaning coworker was already making it awkward by not believing me about my own abilities. Sometimes a Bad Joke can snap people into realizing what they’re doing.

Over-justifying myself: like many people, I get nervous about taking sick days, asking for accommodations, etc. “But I’m not REALLY sick,” I’ll think. “If I was just less LAZY I could SUCK IT UP and keep working.” Or, “If I just TRY HARDER, I can TOTALLY stand long enough to last through this meeting.” Sometimes this results in me over-justifying why I’m taking a sick day and sharing personal health details with way too broad an audience. Chill out. If I treat myself with suspicion, other people will too. Be honest, be direct, but also be concise rather than oversharing.

Speaking of which…oversharing! My idea of “normal mundane detail” is, for some people, “horrifyingly traumatic story”. It’s not fair of me to inflict emotional distress on my coworkers just because they asked how my weekend was.

Trying to pretend nothing’s wrong: this is misguided and always screws me over eventually. It’s true that I can’t take a sick day every time I feel bad, but I also need to be honest about my limitations. Powering through will not make me a more productive worker. (No, self, you shouldn’t keep working when you have a migraine. All that code you write will be SHIT.)

Reframing this problem from “I’m lazy if I stop working” to “I have a responsibility to take care of myself and I will be more productive this way” has been very important to me. This one will vary a lot based on your team culture, your company’s policies around stuff like sick leave, and your particular disability/illness. Being able to say “in order to take care of myself, I need to rest today” is an immense privilege, and one I don’t take for granted. Still, even without super-generous sick-leave, being honest about what’s wrong is helpful. Maybe you can’t take a day off, but can you control something else about your work environment? (Take painkillers when you need them? Take a few minutes to do stretches or physical therapy exercises in your office bathroom? Work in a conference room with the lights off if you’re feeling photosensitive?)

Hoping that other people will remember my limitations, and feeling betrayed/sad/offended when they don’t: I am the foremost expert on myself and it’s not reasonable to expect other people to 1) remember everything I tell them or 2) to internalize it. Healthy, able-bodied people might not realize that by scheduling a lunch meeting two floors away from the cafeteria, I will now have to plan around how to carry a tray of food through the building, because for me a lunch tray is actually a heavy object. It’s my responsibility to communicate directly when something doesn’t meet my needs, and to not assume fault or malice when someone forgets my needs or - much more common - just hasn’t internalized all of the implications.

TLDR; communication is important. ❤️

A lot of this boils down to: be honest, be direct, be kind (to yourself, and to others). My coworkers want to be nice people. Being upfront about my needs and limitations makes it easier for them to be kind to me.

I’ve been really lucky to work with some fantastic people, who have supported me through tough times - and also have done me the huge favor of treating me like a Normal Person. I don’t want to be an Inspirational Cripple, yaknow? Everyone has needs, everyone has preferences, and learning to navigate them with honesty and sensitivity has improved my life a lot.

Thank you to Veit Heller, Julia Evans, Andrew Boot, and Vijith Assar for providing feedback on a draft of this post.