When Trayvon Martin was murdered, the protesters proclaiming, “I am Trayvon Martin,” shined a light on the subjugation and slaughter of young, black men who are guilty of nothing more than being young, black men. However, I must be honest: I am not Trayvon Martin. I am a white woman with a disability who is unlikely to elicit any fear in a paranoid, armed racist, no matter what time I may choose to walk down the street. I sympathize, but I am not Trayvon Martin. I am Justina Pelletier.
Justina Pelletier is a teenage girl with a rare and, often, misunderstood medical condition known as mitochondrial disease. She was receiving medical care for this condition but, upon being hospitalized due to her body’s inability to fight off the flu, a new medical team that refused to contact Justina’s outpatient medical providers declared that her problems were psychosomatic, caused by somatoform disorder (read: “It’s all in your head,”) and detained her in a children’s psychiatric unit. When Justina’s parents expressed their concern about this new diagnosis and attempted to discharge their daughter from the hospital and return her to the care of her doctor, they were told that they were not allowed to do so because the hospital had filed medical abuse charges against them for refusing to adhere to this new treatment plan and subjecting their daughter to supposedly unnecessary medical procedures. Justina has spent the past thirteen months confined to a psychiatric hospital and, more recently, a residential treatment program where her health is deteriorating rapidly, she is in constant pain, and has stated that she feels like a prisoner and simply wants to go home.
The most immediate tragedy here is that this incredibly promising young woman has been, essentially, imprisoned and pulled away from the family that loves her. However, Justina’s story is only unique in the amount of publicity it has received, in large part, due to the incredible efforts on the part of her father to win this case in the court of public opinion following repeated, devastating losses in a court of law. I, too, am living with medical issues that tend to be incorrectly labeled as psychosomatic. Like Justina, I have been lucky enough to work with brilliant medical professionals who, after performing so many medical tests that one medical assistant proclaimed, “I think Dr. X is just taking all of your blood from you today,” have arrived at actual, proven, medical diagnoses that fully explain the symptoms I have been experiencing. However, when I ended up in an emergency room following a domestic violence incident, the focus quickly shifted from my injuries to my medical issues, which led to a diagnosis of a delusional disorder and my involuntary detention in a psychiatric unit.
The psychiatrist who diagnosed this supposed disorder, like Justina’s doctors, refused to speak to any medical doctors I had been working with. I was told that doing so would “feed into my delusions” and that any doctors who would dare help me with this were “not real doctors.” My outpatient therapist was not contacted until three days after my detention in this hospital, and although her efforts to explain the reality of both my medical issues and the abuse I was experiencing (which, I was told, was also a delusion) to the medical student who called her led to his apologizing to me for the way I had been treated, it simply changed the rhetoric on the part of the psychiatrist from, “She’s crazy,” to, “She’s been through hell, and that’s why she’s crazy.” When I asked him to call my therapist directly, I was told that that’s what he has medical students for. I was immediately taken off all medications and supplements that I was on, and coerced into taking powerful psychotropic drugs that, miraculously, produced no cure. As I began quickly losing the ability to walk, the overwhelming sentiment in this hospital was that my struggle to simply make my muscles cooperate with me was being done intentionally, and I was consistently asked why I wasn’t walking. After a few days, I called a patient advocate who was simply flabbergasted that such a diagnosis could be reached without even consulting my doctors, and the resultant intervention led to my release. I fared far better than Justina in that a relatively quick intervention led to my relatively quick discharge, but the damage was already done regarding the pending case against my abuser- the police concluded that I was simply delusional, and chose to take no action to protect me from someone who has terrorized me for the better part of my life, despite the massive amount of corroborating evidence which I attempted to provide them with. At this point, despite the exact medical diagnoses that I have received having changed multiple times, I am too afraid to disclose what my exact diagnoses are- that’s the most immediate and obvious way in which I’ve been damaged by this psychiatrist’s actions.
Historically, the practice of psychiatrists labeling physical symptoms as psychosomatic has been fraught with errors at an enormous financial, emotional, and physical cost to patients. When a diagnosis is presented by a medical doctor and a psychiatrist unilaterally decides that such a disease does not exist and that this patient has psychiatric problems, this is, at best, incredibly irresponsible. Medical tests exist for many controversial diseases, such as Lyme disease and Adrenal Fatigue Syndrome, but no such tests exist for the conditions that psychiatrists often use to replace medical diagnoses. Psychiatrists have an unprecedented amount of power over their patients- especially in the hospital setting. If a medical doctor gives you a diagnosis that you or your caregivers do not agree with, your first instinct is, typically, to get a second opinion or stop seeing that doctor. However, if you have the audacity to disagree with a psychiatrist’s opinion, it is determined that you “lack insight into your disease,” and you often become the victim of forced medication and/or confinement in a mental health facility.
It is time for all of us who have been victimized by this type of behavior and anyone who appreciates the injustice to stand up and say that Justina Pelletier and others like her should never have to fear that they will lose their freedom by daring to present with medical symptoms that are somewhat outside the norm. I ask anyone with a similar story to tell to stand up, be heard, and tweet your experiences with the hashtag #IAmJustina. Let’s do our part to help set this inspiring, young woman free. I am Justina Pelletier, and I will not be silenced.
If you would like to sign a petition or contribute financially to help free Justina, please visit http://www.justiceforjustina.com.
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