So this is a letter I wrote after being rejected from a medical hardship withdrawal petition to express my frustration. I have chronic fatigue syndrome and chronic migraines that prevented me from completing a college course and had approached my new adult medicine doctor for medical documentation which she has on file to verify my statements. She quickly rebuffed that she would not as she was not confident in my statements and was suspicious since I had not seen her personally. Keep in mind she is in California while I am attending school in Washington. I talked to a few other friends whose doctors also gave them similar speeches about how they were not going to excuse a bad GPA because it builds character or who questioned if you really need medical documentation for depression and other mental illnesses because it’s something that you should just get over.
It is discouraging having to convince and stand trial for my invisible disability to the general public, let alone my own primary care physician. Both chronic fatigue syndrome and migraines affect all areas of my life, and I have had to drastically reduce and abdicate job-related responsibilities as well as decline social invitations due to malaise, pain, and immobility. Often, the migraines are coupled with the chronic fatigue which further exacerbates these symptoms. In addition, stress and anxiety levels increase due to a feeling of falling behind in class work and frustration at my body’s inability to process daily functions. Your decision to not to confirm another physician’s diagnosis and verify my medical history has led to additional frustration, emotional turmoil, and issues with mental well-being based on the very real consequences of your decision.
I was hesitant to pursue higher education with the severity of these symptoms but was assured at this university that I would be granted disability accommodations. The disability resource center on campus only requires a one-time physician’s letter detailing the diagnosis and advised provisions that is valid throughout one’s entire college tenure as they recognize the frustration and gratuitous nature of repeatedly having to prove disability (especially those of such chronic nature).
I would like to stand behind my decision to not seek additional medical help. As a college student without ready transportation to a healthcare facility, it would take almost forty minutes to get the nearest Kaiser. That is, only if I have successfully walked to the bus stop. When experiencing a migraine, I experience sensitivity and pain to light, sound, and overwhelming smells that induce nausea. Now if you were experiencing such pain, which I hope you never would have to endure, single handedly trying to transport yourself to Kaiser devoid of these cardinal senses may seem daunting if not impossible. Once at Kaiser, waiting anywhere from forty minutes to three hours in the waiting room to be seen in harsh lighting conditions doesn’t seem any more enticing.
I’ll take it one step further. When no known cure or definitive treatment exists for both chronic fatigue syndrome and migraines, would doing all this, paying a hefty co-payment to be met with shrugs from you and your highly-trained physician coworkers, would you feel like all this would be worth it? At the end of a treatment with only moderate alleviation, I, groggily, must re-navigate myself home and brace myself for the symptoms associated with the drugs--grogginess, drowsiness, a still-dull pain, nausea and anxiety. This is only if the physician decides to treat my ailments seriously; I have been scoffed at, given a Tylenol, and condescending told to go home and rest at the advice of your colleagues.
Now, I should also mention that my family and I are no strangers to understanding health, medicine, and disease. My grandfather helped found the UC Davis Medical Center with John Tupper after being Associate Dean at the University of Michigan Medical School. My uncle worked in ENT at the South Sacramento campus, and my aunt managed a sector within chemical dependency. My mother was diagnosed with leukemia, and it is thankfully in remission. My father had cardiac arrhythmia and was prone to bloody noses. I’m sure you are familiar that warfarin and chronic external bleeding is not a good combination. I am also majoring in medical anthropology and global health--where we discuss the most pressing health issues on the local, national, international, and global level (yes, there is an difference)--, was a teaching assistant for an anatomy class, avidly read the literature around chronic fatigue syndrome and migraines and their struggles to achieve funding and conduct experiments with definitive causal mechanisms of both. I am no stranger to understanding the health, medicine, and disease severity.
After exhausting all possible explanations for my physical decline, my previous physician had discovered that I had had mono. I have read literature that is consistent with the symptoms of chronic fatigue syndrome after being inflicted by mono or similar diseases that affect the immune system. And most of the literature fails to find a sure-fire cause or cure. I understand the potential frustration for you to diagnose; it is just as frustrating, if not more, to experience the debilitating symptoms and effects on a daily basis.”
In this drafted, unsent letter or rant to my physician, I lay out a personal health narrative, equipped with huffy frustration at the medical authority and my expected deference towards a “trained” physician telling me about my body and what I am afflicted with. Or rather, in this case, not. When the educational institution relies on the medical institution for diagnosis and for conference before additional action, both structures place faith within the other institution. But what happens when an institution is confronted with its scientific limitations--such as in the medical field when chronic illnesses have no known etiology or causal mechanisms? This narrative is booming with frustration at my own medical agency and the nature in which my own authorship and authority over my body is second place to those with “appropriate” degrees. This relates to epistemology. What is there to know and who is allowed to know it? Additionally, when we hear of inspiring and encouraging patient narratives, they are always painted as positive and absolutely trusting of their medical professional. I also push back against the idea that the physician is all-knowing by listing my own resume and history with medicine and my own body that would deem me a greater expert about myself than anyone else. Often, in these situations, it is not until I exhibit this hostility or frustration that doctors change their condescending, paternalistic tone to one of startling concern.
My etiology theory is consistent with the medical literature but is vague at hypothesizing at best. I have laid out the signs of illness through the listed symptoms. Additionally, I divulge my treatment route of not seeking additional medical assistance due to the failing nature of the only known medical treatment option. Additionally, it highlights that seeking medical treatment is not an easy jaunt across the street, nor time efficient, nor cheap. All these factors as well as the experienced symptoms and pain influence non-treatment or what would be considered noncompliance. I have been met with physician exasperation for not following their prescribed option for relief. Note, that the medical treatment is framed as only relief not a cure.
By sharing my own health narrative, I hope to illuminate the many factors and frustration with illness and medical authority. It also speaks to the underlying conditions that also impact whether someone seeks treatment or not.