“So, what do you do?”
My body tensed. I was at a friend’s birthday party several months ago, and knew this question was coming. It always comes quickly, if not eventually, when I’m at a party.
It’s the go-to small talk question people employ when they don’t know someone that well — a stark reflection of our capitalistic culture, fixation on social status, and obsession with productivity.
It’s a question I wouldn’t have thought twice about before I became disabled — ignorance that was a function of my white, upper middle class, and previously abled privilege — but is now something I dread every time someone asks me.
What once was a simple one-sentence answer has now become a source of anxiety, insecurity, and stress anytime someone poses it.
I’ve been disabled for 5 years. In 2014, I was hit in the back of the head with a soccer ball by my own teammate, in a Sunday recreation league game.
What I thought would be a few weeks of recovery turned into something beyond my most catastrophic, worst-case scenario.
It took me nearly a year and a half for my post-concussion syndrome (PCS) symptoms to alleviate — the first 6 months of which I could barely read or watch TV, and had to severely limit my time outside.
In the midst of my brain injury, I developed chronic neck and shoulder pain.
Last year, I was diagnosed with hyperacusis, the medical term for chronic sound sensitivity. Noises feel louder to me and ambient noise can trigger painful earaches and burning sensations in my ear that can flare for hours, days, or even weeks at a time if I’m not careful to stay within my limits.
Navigating these types of chronic pain means that it’s difficult, both physically and logistically, to find a job that works within my limitations. In fact, up until this past year, I didn’t even think I would ever be able to work again in any capacity.
Over the past few months, I’ve started to more seriously job search. As much as my motivation to get a job comes from the desire to be able to support myself financially, I’d be lying if I said it also wasn’t to get people to stop acting awkwardly around me when they ask me what I do, and I effectively say, “nothing.”
In the beginning of my chronic pain, it never occurred to me that it would be a problem to honestly answer this question.
When people asked me what I do for a living, I would simply respond that I was dealing with some health issues and couldn’t work at the moment. To me, it was just a fact of life, an objective truth about my situation.
But every person — and I mean literally every person — who asked me this question would immediately become uncomfortable when I responded.
I’d see the nervous flicker in their eyes, the slightest shift in their weight, the proverbial “I’m sorry to hear” knee-jerk response without any follow-up, the change in energy that signaled they wanted out of this conversation as quickly as possible, as they realized they had inadvertently walked into emotional quicksand.
I know some people just simply didn’t know how to respond to an answer they weren’t expecting to hear and were scared to say the “wrong” thing, but their uncomfortable responses made me feel ashamed for simply being honest about my life.
It made me feel isolated from the rest of my peers, who could seemingly default to answers that were simple and palatable. It made me dread going to parties because I knew that moment where they asked what I did would eventually come, and their reactions would send me into a shame spiral.
I never outright lied, but over time, I started decorating my responses with more optimism, hoping for more pleasant results.
I would tell people, “I’ve been dealing with some health issues for the past few years but I’m in a much better place now” — even if I wasn’t sure if I was actually in a better place, or even if being in a “better place” is a hard thing to quantify with multiple types of chronic pain.
Or, “I’m dealing with some health issues but I’m starting to look for jobs” — even if “looking for jobs” meant casually browsing at job sites online and quickly getting frustrated and giving up because nothing was compatible with my physical limitations.
Yet, even with these sunny qualifiers, people’s reactions remained the same. It didn’t matter how much of a positive spin I added because my situation fell outside the generic script of where a young person was supposed to be in life and was also a little too real for the usual superficial party talk.
The contrast between their seemingly light question and my unconventional, heavy reality was too much for them to take. I was too much for them to take.
It wasn’t just strangers who did this, though they were the most frequent offenders. Friends and family would also pepper me with similar questions.
The difference was that they were already privy to my health problems. When I would show up to different social gatherings, loved ones would catch up with me by sometimes asking if I was working again.
I knew their questions about my employment came from a good place. They wanted to know how I was doing, and by asking about my job status, they were trying to show that they cared about my recovery.
While it didn’t bother me quite as much when they asked me these questions, because there was familiarity and context, they would occasionally respond in a way that would get under my skin.
While strangers would effectively go silent when I told them I wasn’t working, friends and family would respond, “Well, at least you have your photography — you take such great photos!” or “Have you thought about working as a photographer?”
To see loved ones reach for the closest thing that they could label as “productive” for me — either as a hobby or a potential career — felt incredibly invalidating, no matter how good of a place it came from.
I know they were trying to be helpful and encouraging, but immediately grasping for my favorite hobby or suggesting how I could monetize my favorite hobby didn’t help me — it only deepened my shame about being disabled and unemployed.
The longer I’ve been disabled, I’ve realized that even ‘well-intentioned’ responses can be a projection of someone’s discomfort with my reality as a disabled person.
That’s why, whenever I hear someone close to me invoke photography after I tell them I’m still not working, it makes me feel like they can’t just accept me for who I am or can’t simply hold space for my current situation.
It’s hard not to feel like a failure when my inability to work due to disability makes people uncomfortable, even if that discomfort comes from a place of love and desire to see me get better.
I’m at an age where my friends are starting to build career momentum, while I feel like I’m in an alternate universe or on a different timeline, as if I’ve hit a massive pause.
And with everything at a standstill, there’s been a low humming noise that follows me around all day, telling me I’m lazy and worthless.
At 31, I feel shame for not working. I feel shame for financially burdening my parents. I feel shame for not being able to support myself; for the sharp nosedive my bank account has taken since my chronic health issues.
I feel shame that maybe I’m just not trying hard enough to heal, or that I’m not pushing myself enough to go back to work. I feel shame that my body can’t keep up in a society where every job description seems to include the phrase “fast-paced.”
I feel shame that I have nothing interesting to say when people ask me what I’ve “been up to,” another seemingly innocuous question rooted in productivity that I dread being asked. (I’d rather be asked how I’m doing, which is more open-ended and focuses on feelings, than what I’ve been doing, which is narrower in scope and focuses on activity.)
When your body is unpredictable and your baseline health is precarious, your life often feels like one monotonous cycle of rest and doctor’s appointments, while everyone else around you continues to experience new things — new trips, new job titles, new relationship milestones.
Their lives are in motion, while mine often feels stuck in the same gear.
The irony is, as ‘unproductive’ as I’ve been, I’ve done so much personal work in the past 5 years that I’m infinitely prouder of than any professional accolade.
When I battled PCS, I had no choice but to be alone with my own thoughts, as most of my time was spent resting in a dimly lit room.
It forced me to face the things about myself I knew I needed to work on — things that I had previously pushed to the back burner because my busy lifestyle allowed it and because it was simply too scary and painful to confront.
Before my health issues, I struggled a lot with my sexual orientation and was trapped in a spiral of numbness, denial, and self-hate. The monotony that chronic pain forced upon me made me realize that if I didn’t learn to love and accept myself, my thoughts could get the best of me, and I may not survive to see my potential recovery.
Because of my chronic pain, I went back to therapy, started facing my fears about my sexuality head on, and gradually started learning to accept myself.
When everything was taken away from me that made me feel worthy, I realized I could no longer depend on external validation to feel ‘good enough.’
I’ve learned to see my inherent worth. More importantly, I realized I had been relying on my job, athleticism, and cognitive capabilities — among other things — precisely because I wasn’t at peace with who I was inside.
I learned how to build myself from the ground up. I learned what it meant to love myself simply for who I was. I learned that my worth was found in the relationships I built, with both myself and others.
My worthiness is not dependent on what job I have. It’s based on who I am as a person. I’m worthy simply because I am me.
My own growth reminds me of a concept I first learned about from game designer and author Jane McGonigal, who gave a TED talk about her own struggles with and recovery from PCS, and what it means to build resiliency.
In the talk, she discusses a concept scientists call “post-traumatic growth,” in which people who have gone through difficult times and have grown from the experience emerge with the following characteristics: “My priorities have changed — I’m not afraid to do what makes me happy; I feel closer to my friends and family; I understand myself better. I know who I really am now; I have a new sense of meaning and purpose in my life; I’m better able to focus on my goals and dreams.”
These characteristics, she points out, “are essentially the direct opposite of the top five regrets of the dying,” and they are characteristics I have seen bloom within me from my own struggles with chronic pain.
Being able to grow into the person I am today — who knows what she wants out of life and isn’t afraid to show up as herself — is the biggest accomplishment I’ve achieved.
Despite the stress, fear, uncertainty, and grief that comes along with my chronic pain, I am happier now. I like myself better. I have deeper connections with others.
I have clarity about what’s actually important in my life and the type of life I want to lead. I am kinder, more patient, more empathetic. I don’t take the small things in life for granted anymore. I savor the small joys — like a really delicious cupcake, a deep belly laugh with a friend, or a beautiful summer sunset — like the gifts they are.
I’m incredibly proud of the person I’ve become, even if at parties I have seemingly “nothing” to show for it. I hate that these tiny interactions make me doubt for even one second that I’m anything short of extraordinary.
In Jenny Odell’s book, “How to Do Nothing,” she discusses a story by Chinese philosopher Zhuang Zhou, which she notes is often translated as “The Useless Tree.”
The story is about a tree that is passed over by a carpenter, “declaring it a ‘worthless tree’ that has only gotten to be this old because its gnarled branches would not be good for timber.”
Odell adds that “soon afterward, the tree appears to [the carpenter] in a dream,” questioning the carpenter’s notions of usefulness. Odell also notes that “multiple versions of [the story] mention that the gnarled oak tree was so large and wide that it should shade ‘several thousand oxen’ or even ‘thousands of horses.’”
A tree that is considered useless because it doesn’t provide timber is actually useful in other ways beyond the carpenter’s narrow framework. Later on in the book, Odell says, “Our very idea of productivity is premised on the idea of producing something new, whereas we do not tend to see maintenance and care as productive in the same way.”
Odell offers Zhou’s story and her own observations to help us reexamine what we consider useful, worthy, or productive in our society; if anything, Odell argues that we should spend more time doing what is categorized as “nothing.”
When the first question we ask people is ‘What do you do?’ we’re implying, whether we mean to or not, that what we do for a paycheck is the only thing worth considering.
My answer becomes effectively “nothing,” because under a capitalist system, I don’t do any work. The personal work I’ve done on myself, the healing work I do for my body, the care work I do for others — the work that I am most proud of — is rendered effectively worthless and meaningless.
I do so much more than what the dominant culture recognizes as worthwhile activity, and I’m tired of feeling like I have nothing important to contribute, whether to conversations or society.
I don’t ask people what they do anymore, unless it’s something they’ve already voluntarily disclosed. I now know how harmful this question can be, and I don’t want to risk inadvertently making someone else feel small in any way, for any reason.
Besides, there are other things I’d rather get to know about people, like what inspires them, what struggles they’ve faced, what gives them joy, what they’ve learned in life. Those things are much more compelling to me than any occupation someone might have.
That’s not to say that people’s jobs don’t matter, nor that interesting things can’t come out those conversations. It’s just no longer on the top of my list of things I want to know immediately about someone and is a question I’m much more careful about asking now.
I still struggle to feel good when people ask me what I do for a living or if I’m working again, and I don’t have a satisfactory answer to give them.
But every day, I work more and more at internalizing that my worth is inherent and is more than my contributions to capital, and I try as much as I can to ground myself in that truth whenever doubt begins to creep in.
I am worthy because I show up every day, despite the pain that follows me. I am worthy because of the resilience I’ve built from my debilitating health problems. I am worthy because I am a better person than who I was before my health struggles.
I am worthy because I am building my own script for what makes me valuable as a person, outside of whatever my professional future may hold.
I am worthy simply because I’m already enough, and I try to remind myself that’s all I ever need to be.
Jennifer Lerner is a 31-year-old UC Berkeley graduate and writer who enjoys writing about gender, sexuality and disability. Her other interests include photography, baking and taking relaxing walks in nature. You can follow her on Twitter @JenniferLerner1 and on Instagram @jennlerner.