I don’t blame my doctor for not knowing what my disorder is. It’s not their fault that it’s a lesser-known condition that has only recently become a part of the spotlight. However, rare (or lesser-known) conditions often take a backseat in the health community.
Dr. Linda Girgis, M.D., expresses her concern on the matter. “Some patients can go years until they are diagnosed, and others simply never are. And when they are diagnosed, sometimes no treatments exist” (Girgis).
What is a statistic to some is the harsh reality of many. It is my reality. I understand that doctors cannot treat me. I understand that there simply is not enough science yet. However… this does not mean that doctors are unable to provide a reasonable amount of care. After all, it is a medical “practice,” and learning should take precedence over any pre-determined bias.
I want my doctor to know that when I am coming to them with misophonia, I am already nervous. I know my condition sounds strange. There may be nothing my MD can do for me.
“We do not have OCD, we do not have a brain tumor, and we are not simply making this up for attention.”
However, when I approach my doctor with a problem that is seriously impacting my life, I hope he is willing to understand that I trust him. Some of my friends have been treated like they’re crazy when they approach their doctors. This is not how health care should work. Doctors have an obligation to their patients well-being. It’s clear that the well-being of patients is put into question when doctors are not willing to listen to the genuine concerns of their patient. Since medicine, both theory and practice, is ever-evolving, we must make sure that our health care practitioners are not only providing medicine but also listening to the patient and their stories.
When I or any other misophonia sufferer goes to their doctor, we know that we are taking a risk. We know that our voices are not part of the medical majority. Often times, patients are at their wits’ ends and need accommodations to stay in school, keep their job, or merely need help with coping skills. I understand this may be frustrating for a doctor who has never heard of the disorder. Trust me. I know that you may be confused by your patient’s statements. What we ask is for you to be open to new information. If we bring you resources, do not dismiss them and tell us it is all in our head. As human beings, we have the right to proper medical care, and we have the right not to be considered as crazy. We do not have OCD, we do not have a brain tumor, and we are not simply making this up for attention.
“I want my doctor to know that I am struggling and that I need him. I want my doctor to know that he is supposed to be my partner in health, not my saving grace.”
I want my doctor to know that if he acknowledges my suffering and asks me how I think we should go about things that he is doing what he can. I want him to know that I do not expect miracles, I merely expect his patience. I want my doctor to know that if he does not know about my disorder, that is okay. I want him to know that I will be happy to work with him on this discovery.
I want my doctor to know that I am struggling and that I need him. I want my doctor to know that he is supposed to be my partner in health, not my saving grace. Like any good partner, I want my doctor to listen to me.
If you are a doctor interested in Misophonia you can read this information packet. Written by Dr. Jennifer Jo Brout, and published for the International Misophonia Research Network.
Misophonia International is a magazine and news site that focuses on research, coping, awareness and advocacy for the disorder. More information on the disorder can be found here.
