I have been living with chronic health issues since I was a teenager. Whether it be chronic pain from poorly-healed broken bones or Endometriosis that would go undiagnosed for years, all of it takes its toll. The common phrase, “No one wants to work anymore,” is ridiculous on many levels but the amount of times amongst a flare up where I think, “You know what? I don’t want to work anymore,” probably numbers in the thousands now. The pain, the mental health crises, and the constant fear (and likely reality) that it will get worse is awful and expensive.
However, in our society, disabled and chronically ill people must so often work just to afford to live. I do not want to work and would rather live easy but I have rent, groceries, a cat, and so much more that need the money I make from working full time. I can’t afford not to work. So, how do I keep my head up on days that hurt?
I remember:
Bathroom Breaks Are Important
This isn’t even a disabled thing, but a human thing. There is never a reason that someone should forego going to the bathroom for hours just for a job. All humans need bathroom breaks and those should not be deemed an inconvenience. Furthermore, many health conditions require frequent trips to the bathroom or require that the person be allowed to go to the bathroom when needed to avoid unpleasant accidents.
For neurodivergent employees, bathroom breaks can be fundamentally necessary to giving our brains a break from the rushes of the shift. Our brains will often keep running to the point that we, ourselves, cannot even keep up with our own thoughts. Taking bathroom breaks or going outside and away from the shift can help our thoughts slow down to a manageable level. There have been times in past jobs where I was left alone or the shift seemed so busy that I was unable to go to the bathroom and I refuse to be in that situation ever again.
Being In Pain Does Not Make You A Bad Employee
I have called out on bad health days. I have left a shift and had to find emergency coverage because I could not continue. There have been days where I had to switch to a different job for the rest of the day because I could not physically do parts of my job.
That does not make me a bad employee or mean that I do not care about my job. My chronic pain is something that I cannot control what days are bad and what days are good, so blaming myself for being unable to do my job is not fair. This is especially hard to remember on days when it feels as though I am asking so much from my coworkers or days when I have to work and I cannot be as present or good at my job, but there is only so much that I can do once I’ve taken all the steps I can to make myself feel better when I am that desperate or in pain. The pain, the call outs, and all the rest are par for the coarse when it comes to being chronically ill.
Stimming Or The Need To Stim At Work Is Not A Sign Of Weakness
Stimming, the repetitive act that helps keep many neurodivergent brains regulated, often gets overlooked or dismissed because, if someone does not stim, it may not make sense why it is helpful to someone’s mental health. Or, maybe you do stim, and you try to stifle it because there is a rush or you may not feel comfortable stimming around your coworkers. However, keeping yourself at ease and doing what helps you is the priority. For me, this can look like stepping away when I have the opportunity to do more physical stims like waving my hands or using stimming toys but also can mean listening to songs on repeat while on break. These all help me continue to do my job as best as I can, even if they divert from what my coworkers may do during their shifts.
Masking Is Not Necessarily A Sign Of Strength
Customer service naturally lends itself to a lot of emotional masking, no matter who you are. We are told to put on a smile and always treat customers with kindness, but so often at the expense of our own feelings. And, if we are able to keep that mask on when we are struggling, service workers are told they did their job well. Masking, however, is a survival technique and not something that is a skill to be rewarded in a job. It is a way that especially neurodivergent people protect themselves around those that do not understand them or ways to avoid conflict when our actions make others uncomfortable. Just because we can look happy, does not mean we are.
Calling Out Is Sometimes Unavoidable
Umeko Motoyoshi and I have both posted on our social media accounts about the guilt that so many of us feel when we call out of our jobs for our health, mental or physical. We feel guilty because we believe that we are letting people down and shame that we cannot just work through our health issues to do our jobs. Neurodivergent and disabled people often work through days that any abled-bodied or neurotypical person could not imagine. Yet, still, we feel like we are failing.
But, we are not. We are doing the best we can, and sometimes that means that work is not possible.
Shoes Are Of The Utmost Importance
I think back to my early days as a barista wearing Toms or simply ballet flats and still feel the pain in my feet to this day. One day, I kept having to do as many parts of my job sitting down because the flats I wore that day finally got to me and I could barely stand because the pain was so bad. I got past my aversions to what chef’s clogs or crocs look like over the last couple years because my body could not handle anymore 8+ hour days in normal shoes. Lesson learned!
Giving 100% Everyday Will Cause Burnout
It is so easy to think that if you give it your all, that everything will work out eventually or that it will get easier as time goes on. The real truth is that giving your all at all times is not sustainable. Everyone has days where they are running on low energy or life outside of work is taking more brain space than other days, so the energy that you bring to work may only be at 20%.
And that is okay. It’s healthy even.
Admitting and accepting that some days won’t have your full attention is just how some days go. I just try to do my best, even if some days my best looks different than other days.
Having a chronic illness or disability can be rough and having to work through long weeks at 8+ hour days can make hard days even harder. It is important to remember, above all, that the priority is taking care of yourself. Every person has their own needs and so, for this blog post, your homework is to write down your own list of things to remember. Try to think of your lowest moments and what you wish someone would say to you to help you or maybe what someone has done for you that helped cheer you up or make you feel better.
The Non-Binary Barista 