Working With (Not Around) Your Chronic Illness
Game Audio LA August 2019 Microtalks Event
*****I AM NOT A MENTAL HEALTH PROFESSIONAL. PLEASE SEEK PROFESSIONAL HELP IF YOU ARE EXPERIENCING MENTAL HEALTH SYMPTOMS THAT AFFECT YOUR DAILY LIFE.*****
These are just the things that have helped me personally in my life and career. Cheers!
We're going to start with a short story. Bear with me - I promise it's related to the rest of the talk. A couple of weeks ago I was STRUGGLING with a basic left-handed piano part. Try as I might, my tiny little baby hands couldn't play the figure without my forearms hurting. After a few minutes of my fingers tripping over the notes every time I tried to play them, my forearms would start locking up and I had to stop playing. I practiced this for days before I finally got so tired of it that I asked a friend, who is a much better pianist than I am, for advice. He told me to ignore the suggested fingering and play what was comfortable. This solved the issue immediately. It sounds obvious when I say it out loud.
There are three important morals to the story. One: Nobody cares how you do it as long as it sounds good. Once I embraced the limitations of my tiny hands, I was able to find a new and much better solution. Two: It is ok to ask for help when you need it. If I hadn't asked my friend for advice, I probably just would have gotten frustrated and stopped trying to play the piece. Three: It is important to communicate what you are feeling. My friend totally just thought me swearing at the piano was me being sleep-deprived and hangry until I communicated what was actually happening. He never would have known what I was really dealing with if I had not taken the time to tell him.
So, how do tiny hands and piano relate to working with your chronic illness? We’re going to look at this from two perspectives. First, we're going to talk about how to deal with your own chronic illness. Then we'll talk about how to work with one on your team.
Some quick numbers and definitions before we get to the advice column:
According to the Center for Disease Control (CDC) 6 in 10 American adults have at least one chronic disease (“disease” and “illness” are interchangeable here - they just happen to go with “disease”), while 4 in 10 American adults have two or more chronic diseases.
The CDC also says “Chronic diseases are defined broadly as conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both.”
The following are a few categories of Chronic Illness, alphabetized so as not to emphasize any over the others: Auditory, Auto-Immune, Cancer, Cardiovascular, Diabetes, Fatigue, Gynecological, Mental, Musculoskeletal, Pain, Respiratory, Substance Abuse/ Addiction, Visual. (I’ve probably missed a few categories. I’m happy to talk later about this.)
We’re not going to discuss ADA and other anti-discrimination laws today. For the intents and purposes of this talk, I’ll assume that everybody knows that ableism is bad.
So! How to work with, not around chronic illness from a Personal perspective:
One: Nobody cares how you do it as long as it sounds good.
It can be difficult with some diseases, but try to schedule around your flare-ups. It’s ok, and honestly a good idea, to try to group your work so most of it happens on your good days. If you have to take a few days off per month to avoid ending up in the hospital, do it.
Make the choice to make things as easy on yourself as possible.
If you have to lay down while at work, do that to. If you have to work with all of the lights off in a dark room with a heating pad and your computer on night mode, cool. If everything hurts and shoes are too much one day - just make sure your feet don’t smell too bad before running around in socks. Choosing otherwise shortens the amount of time each day that you can effectively work.
Two: It is ok to ask for help when you need it.
You have friends and teammates for a reason. If you know a project is going to be super ridiculous, ask a friend to collaborate. If you’re under a tight deadline and you feel like death itself, ask for help with your mock-ups or mixing. (Just make sure you compensate and credit people fairly for their time if you have to do this.)
If you don’t advocate for yourself, (usually) nobody else will. This isn’t because they aren’t being understanding - it’s because they can’t feel what you’re going through. You may look just a little tired, or even completely unaffected on the outside, but you’re actually having a major depressive episode, or your pain has been a 6/10 for hours. People are a lot more understanding if you tell them when it’s happening than if you only tell them when you couldn’t meet their new deadline. (Trust me. It took me a few years to learn this one.) Also, Game Devs are all really cool people. Have a little faith in them - it makes everyone happier.
This doesn’t mean let people walk all over you - It just means to assume the best while you prepare for the worst.
Three: It is important to communicate what you are feeling.
It sucks, and it’s a super awkward conversation, but you have to tell your team from the very beginning about your illness. You can give as little information as possible while still communicating the situation, or you can tell your team exactly what you’re going through. It completely depends on what you and your team are the most comfortable with. You also need to keep your team updated if you’re having any problems.
What do you need to tell your team so they understand what you’re going through without knowing your whole life story and what you ate for lunch today?
I have an illness that will affect my workflow. OR I have (x) illness - I just want to tell you now that it will affect my workflow.
Realistically, these are the deadlines I can and cannot promise to meet. (Personally I always quote extra time just incase.)
Especially if you have flare-ups/ attacks that come on suddenly: These are the signs that I’m having a problem. If I ask for help, here are the things I may need help with in order to recover.
When having a flare-up/ attack that runs any chance of affecting your work: TELL YOUR TEAM. This can be as simple as “Hey all! Not feeling so good today. I’ll be a little slow - I’ll keep you posted if I need anything.”
What about if you want to tell them exactly what you’re going through, but you don’t want to overshare and make them uncomfortable?
When explaining your illness say “Hey, stop me if this is too much or you’re uncomfortable. (As much as I would love to say “That sounds like a YOU problem” every time somebody doesn’t want to hear about a friend’s health, this really does save friendships. It’s ok for people to be squeamish about some things.)
If they ask to hear more, ask if they prefer links to read about or for you to explain it to them. (Personally I prefer to read about things and then ask questions. Some people would rather talk to a friend and hear it from them. Both are perfectly valid.)
Be understanding if somebody doesn’t want to hear exactly what’s happening with you. It doesn’t mean they’re a bad person, and they aren’t trying to hurt your feelings. They have their reasons for being uncomfortable. (This one was the hardest for me to wrap my mind around. The illness that affects me the most is gynecological in nature, and I was raised in a very sex-positive household where I was encouraged to ask 8 MILLION questions about everything. It was really hard to wrap my mind around why a professor in Texas didn’t want me to tell them why I was in the hospital and missed their class.) Again - sounds obvious when I say it out loud. IT REALLY IS OK IF SOMEBODY ASKS YOU NOT TO TELL THEM MORE. You’ll both be a lot happier if you smile and accept it.
How to Work With (Not Around) Your Chronic Illness from a Team Perspective:
Back to the same tiny-handed pianist lessons ---
One: Nobody cares how you do it as long as it sounds good.
This is the part where I talk about the seemingly controversial opinion that work/life balance is important. Crunch is bad. It lowers productivity on a team where everybody is 100% healthy 100% of the time. People become burned out, and their sleep deprivation and lack of adequate time to decompress or socialize begin to catch up to them. (Yes, time to both decompress and socialize is good for all of us. Even those of us who like to hide at home all day.) Hopefully THAT sounds the most obvious out of all the things I’m saying in this talk.
It’s ok to let your team take breaks.
Let your team make things easier on themselves.
Two: It is ok to ask for help when you need it.
If the person on your team dealing with a chronic illness tells you that the work load or schedule is too much for them, it’s ok to bring somebody else onboard.
If you do bring somebody else on board, listen to their suggestions as to who. Speaking from personal experience, we learn very quickly who will be decent about us being sick and who won’t be. Bringing on somebody who won’t be decent about it ends up making the whole team grumpy.
Three: It is important to communicate what you are feeling.
Communication is super important on every team, but especially when you have extra factors like illness added in. Here are the important things to remember about communicating your thoughts, problems and feelings with your chronically-ill team member:
Communicate any concerns as soon as they come up, and in as direct a manner as possible. (ex. “Hey, I know you have some medical conditions. How are these going to affect your ability to complete (x) project?)
Communicate deadlines as soon as you set them. Understand that, if a deadline is suddenly and/ or drastically moved forward, it may not be possible to meet it.
If you want to know how somebody is feeling, ask them directly. If you need a visual, ask how many “spoons” they have left that day. (If you’ve never heard of Spoon Theory, ask me later and I’ll explain it. It’s genius! I wish I had been smart enough to come up with something like that.)
So, in conclusion - with chronic illness, and everything else while developing a game:
Nobody cares how you do it as long as it sounds good. Embrace your tiny hands and change the fingering.
It is ok to ask for help when you need it. Call your friend if you are stumped and need to see the music from a new perspective.
It is important to communicate what you are feeling. Tell your friend what is happening. Don’t just assume they know you can’t play 9ths.
SO ….. Questions?
Selected Questions - With Answers
How do you suggest approaching that I need to take some time to rest when my anxiety is making it difficult?
My suggestion - Try to talk to your team about setting some boundaries. If you all agree that it’s time to rest after a certain amount of time spent working on the project, that should take some of the pressure off of you when you don’t need to ask to take a break.
My friend’s super awesome and really wise suggestion - Learn to recognize when you’re at a point where you are no longer getting anything useful done. When you’re at that point, take a break and come back to your work when you’re feeling refreshed. It will increase your productivity and help prevent burnout.
What is the best way to find a balance between somebody with a chronic illness asking for help and the team offering them help?
So, this 100% depends on the situation and what everybody is comfortable with. This is a conversation best had at the beginning of each collaboration. Personally I prefer for my team to wait for me to ask for help, but I still think it’s lovely of them to go out of their way to see what I need. It just completely depends on the team.
What is Spoon Theory?
Ok, so Spoon Theory is genius. It was invented by Christine Miserandino in her 2003 essay “The Spoon Theory”. Essentially, it represents the energy levels of a person with a chronic illness with several spoons. Each daily activity takes a spoon away. (Ex. You start with 10 spoons. Getting up and ready for the day takes away 1 spoon, leaving you with 9. Driving to work takes away 1 spoon, leaving you with 8. Mixing a cue for a few hours takes away 3 spoons, leaving you with 5. Etc.) You can borrow spoons from the next day, but then those spoons are used and you can’t borrow again the next day. Here’s a link to her brilliant essay: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
If you have questions, comments, concerns, etc. please reach out to me on Twitter. My handle is @StephSWilkinson.