So, this is one facet of my story as a disabled woman. Let me change my language because I don’t identify as strictly disabled. I’m an epileptic woman, but epilepsy is a neurophysical disorder that, left untreated, debilitates individuals. Without medication, my ability to live is affected greatly. When I talk about epilepsy, I talk about it in fun, humorous tones used as a defense mechanism. I don’t really talk about, to the point where I have epiphanies about myself and the world and my purpose.
But I want to talk to you about it. This summer, I changed both doctors and medications, and this change required a hospital visit. This is a standard process because having a week-long EEG is used for many purposes, such as collecting data, diagnosing a seizure disorder, or simply changing medications. Despite its necessity, these hospital visits are never a simple process, and this recent one is no exception. I often felt demoralized and unheard. My new doctor is very kind, but the larger hospital experience created an environment in which I felt patronized and insecure about myself. I felt like that I had to prove my individual worth in order to be heard, meaning I had to fight to prove that I am capable despite being epileptic.This isn’t about vilifying the medical community. I respect the medical community, and I respect what they’ve done. Without them, I wouldn’t have my medications, and I owe a great deal of my current and future success to accessibility of my medications.
Despite this, the medical community needs to reevaluate how they interact with patients. In my personal experience, the medical community does not handle ambiguity well. I have a rare form of epilepsy with seizures that occur deeply within my brain, so there’s no test that adequately picks up my seizure activity. Additionally, I don’t “look” disabled, meaning my disability isn’t visible. So, if everything reads as normal and everything looks normal, then what is the problem?
I’m told the next step after that is to test my prolactin levels. This is a blood test to determine the source of the seizure, meaning whether or not the seizure was epilepsy or the physical reaction to a psychological issue. I passed the neurology test, so then what was it that I had? It seemed impossible for doctors to live with the fact that I have epilepsy because my life and my appearance, and even my test results, didn’t add up to the preconceived, typical notion of an epileptic. Even more so, these things didn’t add up to a “disabled” person. The solution then, because the inability to neatly categorize my epilepsy is a problem, is to run more tests. This means a longer stay in the hospital, despite the lack of need to be there. Because the doctors wanted this data, I had to beg them to let me leave. I had to reassert that I had a life outside of this thing that I deal with, and it took them days to listen to me.
The reason I’m telling this story is that I don’t know how to fix this problem. Because this discrimination is subtle and expected because of larger regulations relating to hospitals, I don’t know if there is a resource for me to explore my situation further. But I know that I didn’t feel secure, and I know that I didn’t feel respected. I know that this is a problem, but I don’t have a solution for this problem.
The medical lens of viewing disability argues for a problem that must be solved, and medicine always has the answer. When medicine isn’t the answer, it is my responsibility to understand my problems and to fix them. It is on me to access my medication from a drug industry that capitalizes on my constant state of illness. It is on me to fight the power when I have no army and no data.
The EEG electrodes weren’t placed on my head until 1 pm. I got there at 9:30 am. I spent the day getting my blood drawn, talking to doctors about my condition, answering personal, in-depth questions. When my blood was drawn, the physician’s assistant looked confused and asked where the patient was. I said I’m the patient, and with a needle in my vein, she said that it’s funny I don’t look like a patient. I wanted to ask her what that meant, but it didn’t feel worth it because I would never see her again.
Then, my nurse got me a helmet. I asked her why I needed it because I’m not a fall risk. She said it’s hospital procedure, that all people with physical disorders must wear them. I don’t remember this experience during my first hospital visit. Or maybe I did have to wear one and blocked out the memory. I insisted I wasn’t a fall risk, and then a few days later when my parents came to visit me they noted that there was a fall risk sign on my door. This was after days of explaining my symptoms and the effects my type of epilepsy had on my body. I explained I’d never had a grand mal seizure my entire life, and yet I am a fall risk by default.
As per these hospital regulations, I was given a booklet discussing my patient rights. After the booklet was given to me, doctors and nurses still came in and out of my room asking me questions, demanding my time. I never had the time to read my booklet, so I never learned my rights are as a patient. An argument to this claim is that I was in the same room for a week, so I must have had time. However, my time had been scheduled for me. There was a specific time that worked for the doctors and hospital staff to do tests and talk, and my time wasn’t considered. Every four hours a nurse would come in to check my vitals, and EEG technicians came in at all hours to check my electrodes. My boundaries were not important, and I got little sleep. So, no, I did not have time to read the booklet.
Additionally, I was offered a personal advocate to assert my patient rights that I didn’t know about. As an advocate myself, I know the reason advocacy exists as a profession. We, after all, like to put band aids on things that are broken. This position exists because instead of sensitivity education and training, instead of hearing disabled individuals talk about their experiences, we sign a bill or add a pill that solves the problem short term but doesn’t erase the stigma.
We know full well that our only source of medicine, technology, and the potential for healing lies in hospitals. We rely on doctors and their knowledge to heal us, and so questioning the validity of any procedure conjures negative responses. It is procedure, so it has to be done. It makes sense for the hospital, and it is a form of protection for the patient.
Maybe I am sophomoric for bothering to contradict these standbys, but I have a simple question: What is wrong with a system that necessitates advocacy? What’s wrong with our healthcare system, our only source of healthcare, which allows social stigma a place in hospital policy?
To the medical community overseeing my stay: You needed to test out my health and my responses before you could believe me. I am a patient, so I don’t know myself whether or not I am a fall risk. My appearance as a healthy woman confused you, but the preconceived feebleness of my mind assured you that your assumptions of my dependence must be real.
Like I said, I do not have solutions for these issues. However, an important first step would be to live with not knowing. And, no, I don’t mean to live without resolving the disorder or sickness and to live without clear medical data and resources, but live with the reality that not everyone who walks into your office or hospital wing is a fall risk, and adapt accordingly.