Citizen Journalist written by jessica kenagy
edited by sarina e. guerra
My name is Jessica, and I’m a 29 year-old resident from Brawley. My story is a testimony to the harsh reality that chronic illness here in the Imperial Valley is simply not taken seriously. I have had an undiagnosed, assumedly idiopathic chronic illness since my freshman year of high school back in 2010. Being a 14-year-old girl, I was initially dismissed as anxious and depressed.
My original symptoms included chronic hypersomnia (sleeping too much), insomnia (not sleeping at all), and chronic fatigue (meaning I was tired all the time). I also suffered from debilitating migraines and brain fog, as well as constant joint pain. Even with the help of my parents, it took a long time for me to be seen by a sleep specialist. After a year (I think—the details are fuzzy) of waiting and battling symptoms day to day, I eventually wound up seeing a doctor in San Diego. I did several sleep studies there, and they found my sleep cycle was relatively normal except that I would enter a strangely long deep sleep around the time that I was supposed to start waking up.
I was told there wasn’t much they could do for me.
When it came to school, my symptoms were a huge distraction. I needed help. I needed accommodations. So, I sought out something called…
A 504 plan is a written document created to ensure students with disabilities can receive accommodations and services from teachers and staff. Thanks to the Rehabilitation Act of 1973 under section 504 (hence the name), it took some time to get said plan because I guess back then applicants needed an official diagnosis.
In the end, my sleep specialist diagnosed me with a long sleep-time disorder called Idiopathic Hypersomnia. Yes, that is a mouthful. She then told my family and I that I would most likely grow out of the disorder. Because of this, and with the 504 plan in place, I was supposed to be given extra time on assignments and tests at school. Also, I believe my absences were supposed to be forgiven up to a point. Because I slept from 3 am to 3 pm—and absolutely nothing could wake me up—I missed a lot of school.
My parents tried everything to get me up in the morning. At one point, the sleep specialist prescribed Ritalin and instructed my mom to wake me up halfway through the night, around 3 am, to give me the pill. I’d take it, barely awake, and go back to sleep. Sometimes that would help me wake up at 6 am when she tried again. But most of the time, I just didn’t wake up when I was supposed to. Even when I did manage to get up, staying awake was a struggle. Sometimes, just to make it to school at all, I’d pull an all-nighter and deal with the crash later.
Throughout my time at BUHS (Brawley Union High School), I had teachers not believe I was actually sick because of the invisible nature of my illness. I was in and out of Independent Study and homeschooling due to my issues with attendance. Teachers would actively tell me…
And, “Do you really need extra time or are you just procrastinating?”
This made high school very difficult for me because I was constantly behind on class work. It took the head counselor speaking directly to my teachers for them to give me the opportunity to complete the overdue work that piled up fast as a result of the mysterious, but very real set of symptoms. And in my experience, one of the worst parts of being chronically ill during high school was the sheer loneliness of it all. Especially when I was involved with Independent Study.
This is an alternative program that meant I went to the Desert Valley campus once a week to turn in missed work and take tests. That’s it. The few friends I had rarely called or texted me while I was in Independent Study. Looking back, I remember feeling so grateful that I was allowed to go to “Grad Nite” and just be a normal teenager for once. I was even able to walk at graduation alongside my friends, Alyx Cardenas and Samantha (Ramos) Espinoza.
I wore a blue dress—I think I got it from one of those free prom dress closet events, though I’ve forgotten the name of it. One of the most memorable moments from the ceremony was Brooks Hamby’s speech. He talked about his religion, even though the school had rejected his first two drafts because of it. The people sitting near me just rolled their eyes. We all kind of knew he wanted a career in politics eventually. I think he even ended up on local TV because of it. The night went on, and crossing the stage was actually a great experience. My Girl Scout troop leader, Carol Sassie, who was also on the school board, handed me my diploma. That was really nice.
The accomplishment of graduating seemed bigger for me than for my peers.
Photo 1: Left to right: Alyx Cardenas, Samantha (Ramos) Espinoza, Jessica Kenagy
Photo 2: Jason Kenagy and Jessica Kenagy
We continued to see doctors to figure out what was causing all these strange symptoms. It wasn’t until after I graduated from high school (by the skin of my teeth) that I started to see a therapist regularly. I was diagnosed with GAD (General Anxiety Disorder) and MDD (Major Depressive Disorder). But this therapist was actively interested in finding out why I still had issues with my other symptoms even after being put on antidepressants. All my doctors at the time seemed to focus on just the mental health issues. While I was indeed anxious and depressed, those feelings were mainly because I couldn’t function as a normal human being. I had doctors tell me, “You’re too young to be feeling this tired all the time.”
They told me to exercise more, and that I needed to make it a point to get more sun. I tried this, but exercising only made me that much more tired. And getting out in the sun seemed to drain my energy as well. Doctors also told me that I needed to lose weight. Now, most women know that when we go to the doctor for an ailment of any kind, doctors will typically tell us the answer is to just lose weight. This can be very frustrating for anyone really, but it was especially frustrating for me. Because I was constantly fatigued, exercising was nearly impossible and my lifestyle as a result was naturally very sedentary. This was because my body was forcing me to sleep literally 10-13 hours a day. And during the time I was awake, I struggled to get to class, pay attention, and get work done.
Later on, while attending community college at IVC (Imperial Valley College), I actually became very good at advocating for myself. It seemed like I had to do that for every class and with every new professor, every year. I still had my 504 plan, thank goodness. However, some professors seemed to treat me like my high school teachers did. Because I didn’t appear ill, they assumed I was faking it or that I was just plain lazy.
I had a few super empathetic professors…
…who truly helped me get through college. Professor Epps taught my Political Science courses: POLS 100 and 102. He was so kind, and constantly reminded me that I could turn in assignments whenever I was able to. He was especially understanding because I made it a point to talk to him during our very first class about my condition. His support meant a lot and made the class feel manageable, even when my symptoms were overwhelming.
Professor Staton—whose first name I unfortunately can’t remember—taught PSY 144, Psychology of Interpersonal Relationships. If I’m completely honest, her class felt like group therapy in the best way. It gave me emotional tools I didn’t know I needed. She also went out of her way to help me when I missed a super important assignment, letting me come to her office to complete it. Both professors made sure to send me the PowerPoint slides for lectures I missed, and gave me extensions on assignments almost every time I asked. I made it a point to only request these accommodations when I desperately needed them. I never wanted my professors to think I was taking advantage of my 504 plan.
I did, however, get assigned the best academic advisor of all time thanks to my chronic illness. It was none other than…
…Head of the Disabled Students Programs & Services, who helped me to see the light at the end of the tunnel. When I needed advice deciding what my next move would be after IVC, she helped me get info for and apply to NAU (Northern Arizona University) in Flagstaff, AZ. Then, right as I was going to graduate from IVC, the pandemic hit.
As someone with a chronic illness already, the thought of getting this unknown disease scared me so damn much. So much so, that even though I was accepted to NAU, I deferred for a semester. I ended up starting at NAU in the Spring semester of 2021. Everything was basically online at that point, and I had the absolute worst time there. Although I lived on campus in an apartment with three roommates, I spent the majority of my time alone in my room at the apartment and never once set foot in a classroom. That first month, I struggled immensely because my new psychiatrist refused to renew my meds. He wanted to see me in person, even though I explained to him I wasn’t local and lived six hours away in a different state.
After that was solved, trying to get those medications mailed to me then became a struggle. I ended up having to get my prescription transferred specifically to a CVS inside of a Target at a very inconvenient location for me. It felt like everything in my life was so much more difficult than it had to be. When I look back at that time now, I kind of have to laugh, because for those three months at NAU I would walk a little over a mile back and forth to get to Target for my medication and groceries. The area was super hilly, so to me, that old joke about “having to walk uphill both ways in the snow”…wasn’t a joke.
I eventually had enough mental breakdowns that I decided, after conversing with my family, friends, and academic advisor, that I should just finish my degree online from home. I was very disappointed in myself for that, and I felt like I had disappointed my family as well. My illness was starting to make me believe that maybe I couldn’t finish my degree. But then, in December of 2023, this happened…
I was so incredibly proud of myself. I felt like I finally had a purpose. I gave myself January 2024 off to relax after accomplishing this nearly impossible task, but the reality is that since February 2024…
I learned quite quickly that what I could do in the mental health field with just a BS in Psychology was severely limited. I currently have no related work experience, just the degree. A degree that I spent a long time earning. And yet, I still can’t find an entry-level job. So, I’ve tried to make the most of it by focusing on my health. I went back to a sleep specialist and learned after two more sleep studies that I now have Sleep Apnea on top of all my other issues. This doctor then blamed all my previous symptoms on that. I tried sleeping with a CPAP machine, as they suggested, but that didn’t help either. Now, I’m on MediCal and it’s back to square one.
Recently, I feel like I’ve lost my way. I’m struggling to find work and my purpose is unclear. I often think about the life I could’ve had if I had never become chronically ill. Where would I be right now? I turned 29 this year, and I can’t help but feel so behind in life. When I was 14, right before everything happened, I had dreams of going to a UC school, getting a degree in English, and becoming a teacher or a professor. I also aspired to be a fiction writer on the side. I saw myself living somewhere with perfect weather and having a partner by now and maybe a kid or two. I did NOT expect to be 29, jobless, living with (and dependent on) my parents, and have no significant other to speak of. I mean, I know that everyone has their own pace and no one’s life is linear. Everyone has their ups and downs, yes. But man, it feels like I’ve had more downs than ups in my life.
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