Posted by How many times as a kid do you think you were asked the question, ‘what do you want to be when you grow up’? At some point, it’s hard not to internalize the idea that you are what you do for a living; that your identity as a person is linked to your career options, and that your success is based on your monetary worth. So, when you can’t do what you need to do, to be what you want to be—or who you planned to be—what are you supposed to do?
At seventeen years old, I was diagnosed with lupus, a disease that causes the immune system to attack healthy tissue throughout the body, and postural orthostatic tachycardia syndrome (POTS), a secondary syndrome the made my blood volume drop and heart rate skyrocket anytime I stood up. I was a junior in high school, applying to college, and staring straight down the barrel of the ‘what-do-you-want-to-be-when-you-grow-up’ gun.
My resting heart rate was 110, I had lost 14 pounds in four months, my lungs were inflamed, breathing was painful, and the constant fatigue was debilitating. The medications started rolling in, and with them came the side effects: nausea, vomiting, insomnia, anxiety, & depression. I remember throwing up at my prom…from the six giant immunosuppressive anti-rejection drugs that I had to take with my dinner. And still, I didn’t even start to think that this disease, and all the symptoms and side effects that come with it, would have any impact on my future. I told myself ‘it could be worse’, ‘it’s not that bad’, ‘if I just keep going, I’ll be fine & nothing will change.’
I lived like that for six years. Of course, there would be certain moments where it would hit me—moments where the forever-ness of lupus would feel overwhelming. In an anatomy class my senior year of high school, when I wanted to be a doctor to study autoimmune diseases, a surgeon came to talk to us about what medical school is really like. I sat in the back of the class and cried through the entire presentation. It was fascinating. It was something I was passionate about. And it was something that I felt like I’d never be able to do. I could barely make it through the day without a nap and a place to quietly throw up in, how would I make it through even a single day of being a medical student, and, after that, a doctor?
But denial and the naïve desperation to be a healthy eighteen-year-old won out. I was determined that there was nothing I couldn’t do if I only tried hard enough. I read encouraging stories about lupus patients who were able to achieve their dreams, and I told myself that I could do the same. I didn’t need to think about any accommodations or how a high-stress career would impact my disease—or how a debilitating disease would impact my career.
I entered college planning to follow the rigid “pre-medical” path. I entered college taking 36 pills a day, with an immune system so suppressed that in my first two months I had to move out of the dorm, self-isolate, and miss classes for two weeks. I entered college before zoom was possible—before anyone thought that teleconferencing and telecommuting could be a reasonable accommodation for chronically ill and disabled people. Instead, I was expected to learn the material from photos of classmates’ notes and take the midterm the week I got back; I got plenty of C’s that quarter. I entered college thinking the world was more accessible than it actually is.
In the middle of my second year of college, I realized that I couldn’t be a medical doctor. I was getting monthly infusions of medications that caused severe anxiety, depression, nausea, and insomnia. I was starting to hate the idea of going to medical school; I could feel my passion for this career path disappearing as I tried to achieve this seemingly impossible goal. I was working beyond maximum capacity with school work but was still failing most of my exams, withdrawing from classes past the deadlines, and was sacrificing the time that I needed to properly take care of myself.
So, instead, I would pursue my Ph.D. in molecular ecology and work as a researcher in a lab. I thought I had finally found something I was passionate about and actually able to do. Beginning to accept some of the limitations of lupus, I thought I would find a way to make this career path accessible enough that I would be able to properly care for my disease.
By the time I finished college, I still didn’t consider myself disabled; internalized ableism told me that I couldn’t be disabled, just differently-abled (a phrase I now despise)– that I should be able to do all of the same things as “healthy” people, just differently. But have no fear! No matter what it was, I would find a way to do it! Six months of working in a lab full time quickly changed that.
After graduation, I decided to take a gap year and apply to biology-related research jobs & gain more experience before applying to graduate programs. I was ecstatic when I was offered a position at a molecular biology lab, doing the type of work that I was passionate about, and that I wanted to continue doing during and after a graduate degree. It didn’t matter that I knew, eventually, there would be a point where I physically couldn’t do the job that I was hired to do anymore; I had made it through my undergraduate degree on a steady regimen of mid-day naps, going to bed early, sleeping late, and being able to strategically skip certain lectures to catch up on work that I had fallen behind on; there was no other way to complete a full-time course load when nausea and fatigue left me bedridden most nights after 8:00pm. Realistically, I knew I wouldn’t have access to these accommodations at a full time research position and, I knew my health would suffer without them.
After six months, I decided not to apply for my Ph.D., and, that I couldn’t work in a lab anymore. Even though I was doing work that I loved, I was miserable– thinking every minute of the day about how much more time was left before I could go home and get in bed. The stress on my body of working eight hours a day on my feet with little flexibility, and the stress of knowing that I was working beyond my limits only caused more lupus flares, which compounded the stress, which worsened the flares, etc. I was coming to realize and accept that being chronically ill was a full time job, and it was one that I wasn’t going to be able to simply walk away from.
I had reached the point where I physically wasn’t able to do what I needed to do to be what I wanted to be. I resigned from my research position, feeling extremely defeated by my illness, and without much of an idea of what I would do– and who I would be– if I wasn’t working in a STEM career. If I wasn’t able to be who I had wanted to be for so long, what I had worked so hard to be, then what was I supposed to do next? I needed to find something new to want to be. I thought about that age-old-question ‘what do you want to be when you grow up?’ a lot during this time and began to let go of the idea that my identity and level of success was linked to my career or professional life. I tried to reimagine the question through a more personal lens. What did I want to be? Healthy. Living with lupus, this obviously isn’t easy. Chronic illnesses require a lot of time and attention in order to mitigate the symptoms, and even then, it often isn’t possible.
Accepting the diagnosis of a chronic illness & recognizing it as a disability is like grieving for your other, healthier self. Moving past the denial about & anger towards having lupus, the bargaining of ‘if I just try hard enough, I should be able to do the same things as before’, and the depression of realizing that the previous sentiment isn’t actually true, to finally accepting that this disease is a prevalent part of my day-to-day life was a strangely freeing process. I am empowered to make decisions that are in the best interest of my physical & mental health now, to advocate for myself & others with disabilities in an unaccommodating world, and to pursue professional options that will let me be what I want to be: healthy.
Erica Littman 