Hustle culture and the pandemic made me hit a breaking point. I was exhausted, but being an activist made me want to fight on. Now, I live by a different mantra.
Running your own business is tough at the best of times, but even more so when you’ve got chronic conditions.
I’m a freelance disability rights journalist and activist. I founded and edit The Unwritten, an online publication where disabled people can tell their own authentic stories. I also live with a whole host of conditions, including, but not limited to, lupus, rheumatoid arthritis, migraine, and endometriosis.
A big part of my chronic conditions is fatigue. This can affect people in different ways, but for me, it feels like my whole body is trying to wade through jelly. I also get horrifically grumpy and irritable, my head hurts, my vision goes blurry, and I struggle to concentrate.
This means that I work differently than many self-employed activists and business owners. The big difference is the pace at which I work. I keep my schedule very flexible because I can never judge how much pain and fatigue will interrupt my ability to work. I’ve always worked from home and have to be careful not to plan too much in one day or week.
But I don’t always abide by my own accommodations. The activist in me never wants to let go of the fight, and I continue working, even when I shouldn’t.
This time last year, I’d been thoroughly worn down by “the hustle.” The “hustle culture” is a term that reflects societies’ trends of working long hours, often to the point of burnout, in pursuit of our ambitions.
I was pushing myself to work full days, constantly rushing from one project to the next. I also found myself saying yes to everything that came my way, regardless of whether it was a good fit.
This inevitably made my conditions worse. I was constantly exhausted, and my hands and wrists ached so much that I wore support gloves and splints nearly all the time. I was completely fatigued.
I’ve reported on COVID-19 and the impact it has had on the disabled community since March 2020. But when governments started loosening restrictions while Omicron took hold last year, I reached burnout and almost had a breakdown. The mainstream media reported that “normal” life was returning — whatever that meant. But the pandemic had consumed my life. I was exhausted because being a disabled person — whose very existence is political — meant I couldn’t separate work and life.
I was exhausted because being a disabled person — whose very existence is political — meant I couldn’t separate work and life.
I was forced to step back in May after two months of near-constant illness. Lupus means my immune system is weakened, so I catch bugs and infections very easily. My body was run down, and I ended up catching COVID-19 but still forcing myself to work.
I broke down and cried at the thought of reporting on Omicron while I was still denying myself time to rest. I then realized I hadn’t taken my medication in a week.
I took two weeks off, some of it self-enforced, but mostly thanks to my husband and friends forcing me to stop.
Not only was I reaching burnout, but despite working so hard, I felt like a failure because I hadn’t achieved the goals I’d set for myself.
Our capitalist society has conditioned us to think that we must set strict goals and push ourselves physically, mentally, and emotionally to ensure we achieve them. If we don’t hit that target, we’ve failed — a ghoulish thought.
But you can’t necessarily stick to rigid plans like hustle culture promotes when you have dynamic disabilities with symptoms that fluctuate not only day to day but hour to hour.
Although it’s February now, the big example that comes to mind is New Year’s resolutions. Every year on an arbitrary date, everyone sets hard — sometimes impossible — goals. When we inevitably come up against difficulties, slip into old behaviors, or the goal becomes unviable, it’s deemed a failure, and the plan is abandoned.
But you can’t necessarily stick to rigid plans like hustle culture promotes when you have dynamic disabilities with symptoms that fluctuate not only day to day but hour to hour. When your body is working against you, it’s easy to be hard on yourself when things don’t work out the way you planned. I know that the fluctuating nature of my conditions has to be considered when I’m setting goals, but my ambitions and hustle culture have often blindsided me.
After breaking down and taking some enforced time off, I realized I needed stricter boundaries with work.
I now insist on logging off the computer by 7 p.m. But I also give myself freedom throughout the day to rest and do things at my own pace. I’m firm with my boundaries and don’t feel guilty about telling editors or clients that I don’t have the capacity for something or asking for extensions.
I remind myself that I don’t have to be available to everyone — and I certainly don’t have to defend my right to live to the Twitter masses. The best thing I have done to preserve my sanity and energy has been to set my Twitter mentions to only people who follow me. This means the trolls can shout into the void without me knowing.
I remind myself that I don’t have to be available to everyone — and I certainly don’t have to defend my right to live to the Twitter masses.
During my time off, I also realized that I hadn’t failed my goals — I just hadn’t achieved them yet.
An important part of goal setting for me has been shifting my mindset. Instead of thinking of goals as rigid plans, I try to plan more fluidly and not give myself time restraints. My disabilities don’t run to a timetable, so why should my goals? I now set achievable intentions that I can see myself reaching in the future and work toward that image.
That doesn’t mean that the goals have to be small. It just means they can adapt more easily when things inevitably need to change. I can still be an activist with a whole range of ambitions.
Once I recovered, the biggest mindset change was reminding myself that I don’t have to fight every battle. Disabled activists are always seen as strong and resilient, but that’s a very damaging image. I don’t have to be fatigued to be an activist.
A quote I live by now is something a friend told me — “the world needs rested activists.”
I’ve realized that although the work I do is important, it’s never worth sacrificing my health over. No matter how important the fight, I need to prioritize rest above all else. Indeed, there will be no fight if I don’t have the energy left. I can be a rested activist fighting for us all.
Medically reviewed on February 28, 2023
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