
A few days ago, I came across a tweet thread by my e-friend, [@TheCodePixi](https://twitter.com/TheCodePixi), who's working on making [#SpooniesWhoCode](https://twitter.com/hashtag/SpooniesWhoCode) a thing, so make sure you join in if you're a spoonie who codes!

> Looking to connect with more [#SpooniesWhoCode](https://twitter.com/hashtag/SpooniesWhoCode)! Or maybe I'm already connected and don't know it? Leave a reply with a little about yourself and your tips for other [#Spoonies](https://twitter.com/hashtag/spoonies) (IE: Me!) on how you keep coding when you're low on spoons. Gimme all your tech self care tips 👇
>
> _[link to tweet](https://twitter.com/TheCodePixi/status/1166495789658624000)_

## But wait, what's a spoonie?

A spoonie is someone who deals with a chronic condition that frequently or randomly takes away their capacity to live life how they want to. If someone says, "I'm low on spoons," it means they probably don't have the energy to do something specific. This doesn't mean they don't have energy for _anything_.

Being a spoonie is a balancing act. We have to be picky about what we spend our spoons on. This is where the tweet comes in. It's **hard** to figure out the balance of what you _want_ to do, what you _need_ to do, and what you _should_ do.

You may _want_ to go out to dinner with your friends because you cancelled the last time. You may _need_ to do the dishes or some laundry because it's piled up over the past few days.

But what _should_ you do? Are you in pain? Are you tired? What are your limits?

## A little bit about me, a spoonie

I haven't always been a spoonie.

For 13 years, I played soccer nearly all-year-round. I quit after my first year of college. Rose-Hulman is an extremely fast-paced school, all the time, and I couldn't keep dedicated 3-4 hours a day to soccer and not get any playing time in return. This was a really hard change for me, emotionally and physically.

That last season, I was in my second car accident. The impact passed from my foot on the brake, up my leg, and into my SI (sacroiliac) joints. This is where your spine connects to your pelvis. Since then, I've had a lot of inflammation and pain in the area.

Two years prior, in my first accident, the vehicle I was driving rolled on its side after spinning out on ice. I never really got a full diagnosis from this, but had back spasms on the lower-right side of my back briefly treated by a chiropractor.

Just last year, I found out I have a slipped disc in my lower spine. It was a relief finally having an answer to all my back pain, but I was still sad about all the time I'd lost to the pain preventing me from functioning. I'd gained a lot weight because I couldn't exercise (and lots of college stress).

Aside from my back problems, I also started getting migraines very regularly my freshman year. I was taking "as needed" medication every single day. I ended up going to the ER for the first time due to a migraine a couple of years later. (2017, I think?) That's when I finally got _real_ treatment for them. I saw a neurologist and a found a GP experienced with treating migraines.

I took a lot of medication after that which, thankfully, slowed down all the migraines. Not thankfully, I had about every side effect in the book for some medications. I couldn't hold conversations, my face and fingers were going numb, and I felt like a zombie.

This is when I truly realized I couldn't keep doing all the things. Something had to give. It couldn't be school; I was already past the "normal" 4 years. I just needed to finish college. So, I stopped doing anything else. Some days, it was literally all I could do to drag myself to classes and group project meetings. I ended up missing a lot of classes. My grades in some of them suffered beyond repair. (I made it out though, woo!) My mental health suffered greatly too.

If _anything_ good has come out of these experiences, it's that I've learned a lot about self care.

## How I keep coding, or doing anything

_This is a summary of the tweet thread I made in response to the one above._

I usually have no idea what a day will be like until I wake up and get moving. Sometimes, I'll wake up with a migraine. If I have it all day and fall asleep with it, I will probably wake up with it the next day too.

My back doesn't bother me as much anymore, but I'm usually pretty stiff when I first wake up. The chronic pain typically is in my legs. On the bad days, it feels a bit like growing pains I guess. Like a heavy ache from my thighs through my toes.

My advice is to know your limitations. I'm pretty upfront with employers about the conditions I have. Some are judgy about it, some are fine. My current job has unlimited PTO and I can also work from home from time to time. Both of these are super helpful for me.

For example, if I have a migraine, it's helpful for me to work from home so I can minimize my environment as much as possible. Driving to work, walking through the city, and working in an open office layout with fluorescent lights only exacerbates migraines. At home, I can find a comfy spot to sit in with my laptop, turn off some lights, and close curtains to block out more light.

As for the unlimited PTO, that mainly eases my fears of being judged for "needing a day." Whether that's for resting because of pain or taking a mental health day.

> Spoiler alert: you probably won't need as many mental health days if you work in a supportive environment.

But let's talk about the other times where these things aren't applicable. If you _have_ to go to work, try to express to your team if you're not operating at 100%. I hope they understand that. (Is anyone ever at 100%?)

Once you're home, use your remedies! I have 3 or 4 things I try before declaring my migraines as "impossible." After that, all I can do is lock myself away and sleep. That seems to help some of the other conditions too!

### Moral of the story

[Just take a break](https://ashleemboyer.com/don-t-forget-to-take-breaks). You are one person and can only do so much. Don't overextend yourself. You and your work will suffer.


It's hard to code when you deal with chronic illnesses or disabilities. Here's what I try to do when those things start to get in the way.

How I Keep Coding When I'm Low on Spoons


I made some shouty tweets on Sunday. [Here's the first one](https://twitter.com/ashleemboyer/status/1135403356506198017), and the one I want to focus on for this conversation.

You can go read the other tweets and think whatever you want about them as a whole, but I'm here to elaborate a bit on what I was (and still am) feeling.

Side note: if you have any inclination to make excuses for the boss in the tweet or anything of the like, please hop out now. This is not a debate. How I feel about being minimized as a disabled person is not up for discussion.

Another side note: this topic goes beyond people who sign the paychecks. Everyone should know about the identities of their co-workers, but those people way up in the hierarchy should _especially_ know the people they expect to do a good job.

So, why should we get to know the people we pay?

# You can lead them better

Knowing how people tick makes it easier for you to lead them. You'll know what they can and can't handle, when they can handle it, and how to get them where they need to be to actually handle it. Leadership isn't just about telling people what to do.

# You'll have a chance to understand their perspective

It's not really possible to know \*exactly what someone else is going through unless you've actually been through it yourself. Even still, every single person is different and copes with life in their own ways. Your best chance at knowing what someone else is going through; however, is by listening and remembering what people tell you.

# You won't make them feel isolated

Going back to my above-mentioned situation specifically, it's hard to describe how it felt to learn that my boss didn't know for 10 months that I have hearing aids. I am a disabled woman. It's the biggest piece of my identity because it affects my quality of life in every possible way. It's not a difficult fact to learn. I talk about it daily.

I keep trying to write the next sentence and they keep coming out wrong. It's a really strange feeling to know I was sitting for months on end putting in so much effort, and the simplest effort wasn't being put back into me. It feels lonely and isolating.

Bottom line, just do the right thing. Don't let your employees feel like that. All it takes is a few conversations and a little bit of effort towards remembering facts about people. Make the people you pay feel important.


Know who you're sending your money to, especially when you send them a lot.

Get to Know the People You Pay


Not that I feel the need to explain myself, but I want to share that I'm hard-of-hearing. It's genetic and just about everyone on my family's maternal side suffers significant hearing loss. I've had hearing aids since I was 10 years old, and as I've grown up, it becomes more and more clear to me how little people understand about the importance of accessibility.

This post is a bit of a rant since all of the below have been said to me personally (all in one conversation, actually 🤦🏼‍♀️). These are all the things I wish I could've said at the time, but you don't always get to speak out when you're like me. It's exhausting, and I'm writing this post as an ask to **please be more aware of the things you say and how you say them**. You might mean well, but your words can still be incredibly hurtful.

## "It's low priority."

That's pretty clear at this point, but why is that? What's your excuse? Is it too hard? Do you not want to spend the time learning about it? Are there not enough of us that exist for you to be concerned about our needs?

## "We need to beat competitors to market."

Based on my experience in this industry, I wonder if _they_ are even concerned about accessibility. Consumers value companies that value them. You should be trying to stand out beyond having a large number of software features.

## "I get it, but..."

No, you obviously don't. If you did, you wouldn't be saying any of these things to my face. You either think you're super woke _or_ you completely forgot that you're talking to a disabled person. I'm kind of afraid of how you talk about disabled people when you're away from us.

## "There's no point if no one is using it."

So, when people start using it, how do you plan on figuring out how many of them need a more accessible tool if we can't actually use it to tell you? We don't have the time for you to play catch up. We'll just go somewhere else.


I'm a disabled woman and have a few thoughts about how able-bodied people speak to people like me about accessibility.

Posts Related to the "disability" Tag