Growing up, my family taught me two mottos to live by. “Never Quit” and “Never Say Never.” I even wrote them on a poster for an elementary school project when I was in first grade. They were powerful words that I internalized deeply. When I wanted to quit singing lessons, I didn’t because I knew that in our family, we didn’t give up. As I grew into adulthood, particularly after I finished my undergraduate career, I realized that maybe these mottos had a darker side to them. Another meaning of push yourself no matter what.
When I lived by the motto to “Never Say Never”, I believed that I could accomplish ANYTHING. If I wanted to become a Division 1 College Athlete, I could. So, I joined my school’s rowing team and rowed for my junior and senior years to prove to myself and others that I could do whatever I wanted if only I blindly pushed myself to my limits and didn’t give up.
Hiding my chronic illness
If I wanted to hide my chronic illness from my college friends, I could. And I did. No one knew that I almost didn’t make it back to college for my sophomore year because I was bedridden for the entire summer before the fall semester started. This was before a diagnosis, so I thought I just had to tough it out without answers. I was taking sleeping pills and steroids to calm my immune system. I was sleeping three hours at a time as I woke from pain throughout every night. That wasn’t too hard to hide, because I laid heavy in my bed or on the toilet in wincing pain nearly 24 hours a day. I was hiding from others to protect them from my fear-ridden reality.
I returned to college on a new medication and it saved my façade. I wasn’t going to quit college just because of a chronic illness telling me to. I put that summer behind me and didn’t speak of it again.
After four years, I graduated with a Bachelor of Science in Psychology and Biology. Technically in Psychology with an emphasis in Biology. My mom said that I should’ve studied Biochemistry and provided me with an unspoken indication that my studies were not good enough. That I was “giving up” to study a lesser discipline of Psychology.
But I was proud of myself for graduating because I didn’t quit. I struggled so deeply the last few months of my time at Santa Clara University. My grandmother passed away three weeks before I graduated, and I had to leave my rowing career behind a month before that to save my quickly deteriorating physical health. Only a select few of my teammates believed that I had to put away my oar because I had an invisible illness that was gradually flaring more severely inside of my body each day.
It was becoming increasingly difficult to hide my reality to those around me. But I had been practicing those family mottos my entire life. Don’t quit and never say never, right? If I tried hard enough, I could accomplish anything.
Doing my best to fit into the norm
I became an expert in avoiding the idea that maybe I was different from others. I continued through college and many jobs as if I could blend into “the norm”. I never liked being the center of attention, and I was taught in childhood that speaking out and embracing your differences was not appropriate. I trudged through college alongside my healthy colleagues because that is what I was expected to do. For years, I practiced hiding a significant part of my life and no clearer was that seen than in my professional career after my undergraduate schooling.
I decided I wanted to pursue a master’s degree in Athletic Training a few years after getting my bachelor’s degree. I convinced myself to combine my love for medicine with my love for sports and work as a healthcare professional, taking care of athletes. I was holding strong in remission at that time, thus feeling relatively well at the beginning of this new professional endeavor. I moved across three states and began what I believed to be my dream career. By following the motto of “never saying never”, the logistical aspects of this profession didn’t even cross my mind. I could do anything. I studied and went to daily classes for thirty hours a week. I worked in my clinical rotations for another twenty hours each week, essentially volunteering for 500 hours per semester. I traveled with football teams, for wrestling tournaments, for basketball games, and so much more. I would pack lunches and make sure I had time to cook most of my meals, because my illness doesn’t work well with quick food on road trips. I was different. I tried so hard to fit into my group of classmates whom I saw every day. We would joke about how stressful the program was and how little time we had to sleep and rest after working every evening and every Saturday at games, tournaments, practices, etc.
I slowly realized that I couldn’t physically or mentally take it. But I didn’t go down without a fight. I was raised to be fearless and always strive for perfection. I fought with every ounce of stubbornness I could muster to stay in the program and convince my body that it would be fine. I went to the school’s disability office. I needed help to reduce my clinical load so I could finish my classes. I begged for accommodations that would lessen my physical burden of expectation to be a normal student. Isn’t that why colleges have disabilities offices anyway? I would plead and sob for weeks as my body was deteriorating from the inside out. We are not all the same. My “blending in” façade was breaking down.
I knew when it was over for me. I walked up the stairs from the disability office, located in the basement of the student center. There was construction going on all around the building and temporary, hanging lights lit up the hallway towards the exit door. I dragged my weak body out the door and sat on the closest bench I could find. It was April and the wooden bench was wet with earlier afternoon rain. I sat anyway because I knew I couldn’t stand any longer. I called my dad and sobbed. He answered my call with, “Hey boots, how are you?” My throat gently seized, and tears began to run down my cheeks like they had been held in for far too long. I told him how much I fought for the right to continue being a student and work towards the career I was convinced that I needed to pursue. My stubbornness limited me from the realization that “quitting” the program would save my life. My dad told me that life shouldn’t be this heart wrenching. And I knew then that I would never become an Athletic Trainer.
Protecting yourself is not giving up
I medically withdrew days later. After seeing more and more blood in my stool, alongside crippling fatigue, I knew my Ulcerative Colitis (UC) was screaming for me to rest. I needed to protect myself from the additional harm that I was placing upon myself because I didn’t want to “give up”.
Leaving a graduate school program made me re-evaluate my family motto of “Never Say Never”. Maybe I really couldn’t do anything I wanted and that I had limitations. I was crushed with the understanding I would never be in a profession that I thought I could excel in. I felt like a complete failure.
I spiraled into the darkest time of my young life. I was in an UC flare for about two years and bedridden for most of that time. Medications stopped working, then my other medical options started running out. Quitting to me, felt like getting a colectomy to remove my diseased colon. I already felt like such a loser as a sick person in a flare, I needed to be strong and push through until more options presented themselves to me. It felt like my autoimmune disease was telling me that in all honesty, I had to say the word “never” a few more times than planned.
A silver lining appeared when I bought a paper notebook. I began writing because I had no one to speak to. I wrote for myself. I put my thoughts on paper, mainly to get them out of my head. No one could understand what torment the disease was causing me. The isolation that comes with being bedbound was the most powerful force I’ve ever experienced. I would go days without seeing anyone except my mother, who I had to live with at the time. I wrote in my journal nearly every day. I would write at 3 am when I couldn’t sleep because the pain in my abdomen was strangling my internal organs and leaving me breathless in the darkness. I was a 25-year-old woman, restricted to my bedroom and living room because my body was attacking itself. I couldn’t find proper medical treatment to calm down my own immune system’s wrath against my healthy tissues and I had to come to an acceptance that in fact, I was different than my colleagues throughout college.
Finding a new path
My writing reawakened my thirst to learn. I took an online class in clinical readings and I excelled for the physical state that I was in. Getting a “C”, felt like the biggest accomplishment I had in months since leaving school. I found hope in my words as I would re-read my journal entries and remind myself that I made it through times that I thought I wouldn’t.
Writing furthered my life in a way that I had never expected. After I found a medication that worked for me, I knew that I was going to be a writer. I would always be able to write, even when bedbound. I’m typing this right now while propped up in my bed. A position that I’ve grown accustomed to.
I realized that the power of my words wasn’t just changing me, my words had the ability to change and help others too.
From my bed at my mom’s house, I began as a freelancer doing web content. I was referred to a platform where I could make a profile and sell my words. I posted that I could write research articles and create any type of web content. My first freelancing job was in database management and copywriting. I thought, this is what I’m meant to do.
I wasn’t “giving up” on anything when I left graduate school, because writing came to me and has benefitted me ever since.
I continued freelancing for about a year. Working from home was incredible, because even though I was physically doing much better than my bedbound days, I was still suffering from a variety of symptoms, mainly a debilitating and invisible fatigue. I still don’t have any concept of how a “normal” person gets up at 6 am, goes to work for EIGHT hours straight, comes home and does it again the next day. I would burn out within a week from sheer exhaustion.
My stubbornness to be like that “normal” person re-emerged when I tried to venture out of the realm of remote work. I applied to a big wig medical company to write web content. Surprisingly to me, I got the job!
I was so excited to work a “normal” job. I would be a “normal” person again. I would “fit in” and I would be “comfortable” working at a desk all day.
I showed up at the complex of office buildings and it took me ten minutes to walk from my car to my desk. I was fatigued by the time I got to my cubicle at 9 am, after walking past thousands of stressed out people. I knew I couldn’t do this job. I knew that I would very quickly burnout. “Never Quit” though, right? I emailed my doctor; I emailed the recruiters that hired me. I explained that I needed medical accommodations to be able to work from home at least 50% of the time. No one understood my request except my doctor. The recruiters told me that I didn’t make that need clear when I was interviewed and they “didn’t know where this was coming from.”
The problem was, I made it crystal clear to the first recruiter I met that I would need these types of accommodations because of my UC. The impossibility of explaining an invisible illness to them became clear. They fought back and argued against my medical needs. I cried in the hallway while on the phone with the recruiters, during my first day.
I didn’t stay very long. I finally got the accommodations that I thought would be enough. I worked four hours at my cubicle and then came home, went straight to the couch and laid down because I was exhausted. I put my work laptop on a pillow above my abdomen and worked the remaining four hours from that position. I knew I needed to work from home entirely, but my superiors at the big wig medical company were not understanding. They said that I needed to be in the office in case “anything came up.” What did that even mean? I knew my work was better and more productive if I was working from my couch.
I held onto the dire need to be like other people my age, who could work full time and go out to events and only need 6-7 hours of sleep per night. There are days, even now, when I pray for the ability to be like other 29-year old’s and work overtime at “the office” and have my boss notice me for how much extra work I put in. I found that a person’s worth is too commonly only metric based this day and age.
After my boss said I couldn’t work entirely from home, I knew I couldn’t continue. A workplace accommodation for me was a need, not a want. Just like I experienced in graduate school. But my boss didn’t understand that having a chronic illness doesn’t offer me enough energy for that type of debate.
My body told me what to do and that was to quit. But what happened to “Never Give Up”? This time, I had to. My stubbornness to be like “healthy people” got me again, but that time, I didn’t feel as much shame as when I left the athletic training program. I knew that I had tried my best and it just wasn’t going to fit into my life, and that’s okay. My coworkers seemed to find a level of sustainability in their roles and home lives, but I couldn’t find that. It was easier for them to hide their stress from work, while my body wouldn’t allow it. I pushed myself so hard to try and prove to everyone that I could “succeed” according to the normal standards of working full time in an office.
Acknowledging my different reality
My reality is different than anyone else’s. We all try to fit into this “normal” way of how to live a life. But I’ve learned that a job needs to fit into my way of life, not the other way around.
The accessibility in my former graduate school program was non-existent, because apparently, I was not the “normal” type of disabled student. In this job, I felt the same type of disconnect. One of my recruiters at the big wig’s agency texted me at 8 am the day after I submitted my two-week’s notice. She wanted to talk, and I said that I would be free at the end of the workday. I knew she was upset with me, because, as a contractor, she was getting paid from each hour I worked. I called later that day and she told me, “We are just disappointed. We thought that after all the work we put into getting you accommodations, you would be able to continue working in the role.” She told me she was disappointed in me at least twice more during that conversation. There are numerous problems with how she treated me.
Number one: You NEVER shame a person with disabilities when they tell you they must quit a job. I said it was because I found another position that I wanted to pursue, but that position was to better my health, I just knew they wouldn’t understand that, so I lied.
Number two: You are not allowed to be “disappointed” by a decision made by another grown adult. You are illustrating that you believe I’m not capable of making a professional decision for myself. You cannot tell someone that you are disappointed in them for making a choice that was always on the table.
Number three: Do you have any idea how disappointed I am daily because I am controlled by a power greater than myself? Being painfully aware of how each choice I make will impact my health. Never having the option of putting that awareness secondary to anything else in my life. The recruiters will never know why I had to leave. I don’t expect them to, but I did expect respect for my decision.
I was raised to be fearless and to always strive for perfection by following the mottos of “Never Quit” and “Never Say Never.” I fought against my own body to constantly be “better” in the workplace and in my academic career. I knew when I was diagnosed with UC in 2009, my life wouldn’t be perfect. Perfection is and always was unattainable in a job and in life, even for people living without a chronic illness.
Finding my own work-life balance
What I do know now is that I’ve found an incredible work-life balance and I’m so deeply proud of myself for letting go of the jobs that didn’t serve me. Although those jobs may be perceived as “normal jobs”; I am so happy to be given the flexibility to work remotely. I work from my home office and lay down whenever I need a break. I honor that option every day and I am in a place where I can accept my differences and my needs. My work environment may not be perceived as “normal”, but I feel professionally fulfilled.
I will never be an athletic trainer and I will never work in a cubicle. I’ve learned that it is okay to say “never.” Because, for me, it’s not a negative stain on your reputation when you must quit a job or a situation that is not benefitting your wellbeing.
I realize the deep power in having professional options. I can stay at a job to maintain a façade of being like everyone else as I sacrifice my health, or to gracefully leave a position because I know that my health is, and will always be, my top priority. Someone may be disappointed in my professional choices, but that is because no one can fully understand another person’s struggles unless they walk in their shoes.
I now own the fact that I am a person who has physical limitations that govern my wellbeing. I am excited about the profession of writing as I know it’s been so deeply healing in my life. I’m proud to have found opportunities that incorporate all parts of my identity and my accepted “normal”. I hope to continue being true to my whole self in all my career pursuits – and be gentler with myself when I must “quit” an activity or environment. Today, when I say I could never go down a different career path, it doesn’t mean that I am a failure, it means that my current path is more brightly illuminated – and accessible.
Today’s post was written by Kristen Hutchison who has built an unconventional but satisfying career for herself as a freelance writer and medical copywriter. You can see her work on her website, view her profile on LinkedIn, or follow her on Twitter. Thank you for sharing your story Kristen!