When I first got to college, I began to develop periodic fevers. Every month or so, I would develop a low grade fever combined with intense sweating, fatigue, and malaise every day for 2 to 3 weeks straight. It took me multiple months to think anything of it. I had always been someone with less than average health. In middle school, I received monthly infusions for an immunodeficiency, and had recently been diagnosed with gastritis. I also suffered from severe asthma and anxiety and depression, but never once considered myself chronically ill or disabled. During winter break of that year, I sought help from my primary care physician, who sent me to an immunologist, assuming that my immunodeficiency was back and had taken a new form. Thus began the slew of doctor’s appointments.
I’ve been diagnosed with a half dozen syndromes and illnesses over the past two years of investigation. What started as a reappearing Immunodeficiency morphed into Tumor Necrosis Factor Receptor-Associated Periodic Fever Syndrome, IBS, Somatic Symptom Disorder, Hypochondriasis, Fibromyalgia and most recently, Postural Orthostatic Tachycardia Syndrome.Meanwhile my symptoms changed and got gradually more intense. Each doctor had their own theory for my symptoms, my medical history slowly growing into an immense list of misdiagnoses and confusion, leaving me to wade through and pick out what made the most sense. My diagnosis journey is nowhere near over.
Around half way through the entire process, I began to identify as disabled. My health problems were having a significant effect on my life, and I was forced to reach out to the disabilities center at my school to receive accommodations. I received pushback for this identity change, however, from a variety of individuals. Professors called me a safety hazard and told me to drop their class. I had to drop multiple classes and could no longer continue the job I loved so much. I spent more time away from college and more time at various health centers in Orange County and Los Angeles.
My parents pushed back against my identifying as disabled, similar to their involuntary flinches when I call myself queer. They couldn’t understand why I wanted to call myself these terms that had such negative connotations. I was insulted at first by their hesitancy. But I soon realized the history of these terms, noting how “queer” was often used as an insult, and that “disabled” holds a similar past. Nevertheless, I’ve found pride in both these identities, as they allow me to relate myself to larger groups, people who I can relate to on a level different from those who do not share these labels. It allows me to connect to a rich history of powerful activists and role models, from the Trans women throwing bricks at the Stonewall Inn in 1969 to my beautiful sick chick sisters who strive for legislative change for those with chronic illnesses in 2017.
I refer to myself as “queer” because it is what best describes me. I knew I liked girls from a very young age, my “sexual awakening” sadly not arising from a best friend or a popular tween starlet but from the pages of a Victoria’s Secret Magazine. I grew up randomly selecting boys from my classes to be my “crush” when in reality I didn’t really care for any of them. I always knew I was different in the way I was attracted to people, not unlike the way I knew I was different in how much school I missed due to sick days. I didn’t allow myself to really come to terms with my identity until junior year of high school, when my best friend cameout to me as gay and a few weeks later I confessed my personal confusion over my sexuality via text. Similar to all the diagnoses and misdiagnoses I’ve endured, I continuously labeled and mislabeled myself until I finally settled just on “queer.” I’ve toyed with straight, lesbian, gay, bisexual, pansexual, even asexual, but never felt that anything really fit. I’ve always been much too fluid for such a label.
Although it might not lead to the easiest life, I’m happy to queer and I’m happy to be disabled. Both identities are rich and unique, and I’m proud that I can relate to so many amazing people that share the same labels.
Eleanor Goulden is a 20 year old college student from Irvine, California. She is a rising junior at Occidental College in Los Angeles where she studies Theater and Cognitive Science. When not in class, rehearsal, or bed, she does her best to involve herself in the activist community at and around Occidental.