I have a lesser-known brain condition that has made my life more challenging than I ever could have imagined. I no longer attend family functions. When I do, I am forced to hide in a corner with minimal socializing. At my graduation, two years before my grandmother died, I was forced to miss out on valuable memories with her. I hid in my room while my family celebrated my accomplishments. Easters, Christmases, and other holidays have simply become dreaded occurrences. If I do go home I am bombarded by stimuli. My mother shakes her leg, my father taps his fingers whilst driving… the list is never-ending. The response each time is the same ― I flinch. I panic. I feel the overwhelming all-consuming anxiety, discomfort, and then pain. I cannot remain when there is a “trigger.” There is no way to avoid the reaction, and the only way to stop the feeling is to remove myself.
Misophonia, the aversive (fight/flight/freeze) reaction to otherwise normal visual/audial stimuli has defined and shaped my life.
I have heard from people in the community, in the past, that they are contemplating Misophonia’s heavy weight on their lives. Some have approached me and said, “I’d be better off dead,” others simply wish to be deaf. This is unfortunate. This is terrifying. However, we need to realize that our disorders are not entirely to blame for our mental states. Many have approached me with fear — especially parents. They ask, with good reason, “Are my kids going to be okay? How can I help them?” Of course the answers aren’t always blatant. Misophonia remains cureless, but it is not without hope.
An article published attributes the suicide of a New York historian to her Misophonia. (//nypost.com/2016/11/16/every-day-noises-drove-this-historian-to-suicide/) The author mentions that she knows the subject had Misophonia due to her own relationship with the woman. I wonder, and I fear, how this is going to be perceived in the media. Since the publishing of this article there have be two more pieces (one on yahoo, the other the daily mail) that have already led to sensationalization of this issue. Once again, we are brought the attention of the public as memes — we are something to laugh off, not take seriously, or considered twisted.
Suicide is largely draped in stigma. Various mental health organizations, support groups, and medical communities spend every day trying to combat this stigma. I will always advocate for suicide awareness and prevention, but I wonder — who is this article really helping?
Conversations about a disorder are important to further awareness, generate support, and help advocate research. This cannot be done if we are fighting the general public, research community, and within our borders. Bringing up suicide — aside from the sadness, unfortunate nature of mental health, is going to change the conversation from one of hope and further polarize persons looking for help. Statements like “no cure”, “sound rage”, and “chewing rage” make us feel abnormal, isolated, and without hope. We want the general public to understand that we are struggling. We cannot merely become wilting flowers that accept a fate of bleakness. While this woman’s journey ended in the worst of ways, it is not the only story to be told. There are many misophonia sufferers that have families, friends, travel, and enjoy life to great extents. Any disorder can become so severe in one person that it leads to suicide or other mental health crises. Instead of speaking heavily of suicide in cancer patients, most advocates opt for an approach that furthers the entire cause, and in turn will lead to fewer cancer cases that feel hopeless.
Misophonia has yet to be classified but it appears to be based in the amygdala. It is most-likely physiological and neurological. It is important, when discussing sensitive topics such as suicide, that we understand the hefty weight and difference between mental illness and physiological. While they are all in the brain, we cannot portray that if she had just, “sought out therapy” everything would have been okay. There are many unanswered questions, as there often are with Misophonia. If a cure arrived the day before, would she chosen to stay? Or, was her emotional past too heavy. There are no guarantees. Instead of speculating, sensationalizing, or using one woman’s tragedy we need to move forward and promote research. We need to fight stigma for all brain disorders, and understand that we all have different brains.Looking for more information on misophonia? Consider attending our workshops at Misophoniaeducation.com