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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 over-whelming 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.

“Easters, Christmases, and other holidays have simply become dreaded occurrences. If I do go home I am bombarded by stimuli.”

I did not always have this condition. At the age of 16 sounds started to become more apparent to me. What was once a pleasant hum in the background had turned into an assaulting presence. Then came the visual stimuli. My mother’s leg shaking became so aggravating that I began to retreat from her presence. I simply could not bear it. I did not know why or what I struggled with at the time. I felt frustrated with myself, in awe as to why I couldn’t just ignore the sounds. Thanks to my cousin, to whom I am forever grateful, I was told about misophonia. This name, coined by the two researchers Jastreboff and Jastreboff, is more than “hatred of sound,” “chewing rage,” or “sound rage.” My story, and that of the wonderful people that I have met over the past year, has proven to me that we are complex human beings that only ask for a little empathy.

“I did not know why or what I struggled with at the time. I felt frustrated with myself, in awe as to why I couldn’t just ignore the sounds.”

Every now and then a new article about misophonia will pop up on my newsfeed, timeline, or other social media accounts. Since my disorder is not well known many think I should be happy about this “coverage.” Quite often I cringe. I have had to stop reading them completely. Many of these articles are laced with untruths — that we are full of rage, particularly at loved ones that chew, that we may be experiencing a form of OCD, or some just mock us entirely. Last year Kathy Lee and Hoda had a segment on my disorder. As I write this I am nearly in tears thinking about it. We were called “miso-phoney,” told that our disorder wasn’t real, and openly mocked on live television. The ladies made triggering sounds whilst they did this. We were aghast. However, since this condition is so unknown there was no backlash. Some sufferers signed a petition and sent it to them, but nothing ever happened.

“Last year Kathy Lee and Hoda had a segment on my disorder ... We were called “miso-phoney,” told that our disorder wasn’t real, and openly mocked on live television.”

As of now, the research program at Duke University claims, “There are no single specific behavioral or device-based treatments that have been rigorously tested scientifically and shown to efficaciously treat misophonia. At this point, there only are early small scale uncontrolled and pilot studies that have not yielded definitive results.” However, we are not without hope. There are researchers across the world that are working to figure out what’s going on in our brains — four programs run by the International Misophonia Research Network. Yet this does not change that we are still struggling.

Our struggles are not that different from what other disorders have faced in the past. Autism, Asperger’s syndrome, bipolar disorder, and both mental and neurological illnesses alike have had their fair share of stigma. I am not saying that we are the same as these people — but we do have different brains when compared to the neurotypical person. Our brain differences have made our lives, relationships, and everyday functioning change. Instead of acceptance we have been faced with denial. I have heard stories of marriages ending due to this condition, and parents feel disconnected with their children, regardless of whether the child has the disorder or the parent. Academic research has a long way to go. Much of the research has not included necessary follow-ups and any possible treatments are merely based on assumptions. According to Dr. Brout of the IMRN, this problem comes from mis-representation.

There are two groups of psychiatrists and psychologists who are hell-bent on classifying misophonia under Obsessive Compulsive and Related Disorders (the new category under which Obsessive Compulsive Disorders is subsumed in the DSM-5). They are offering numerous treatments based on their own research, and none of these therapies have been properly trialed.

Instead of silently suffering, I have become proactive for my disorder. I write about my experiences in Misophonia International. I try to tell people just because we are different does not mean that we are not worthy of respect. Since there are little to no accommodations for unknown disorders, many feel helpless and abandoned. However, it’s important that sufferers of rare and lesser-known disorders are advocating on their own behalf. Disorders like autism did not become commonly known due to hiding and keeping important voices unheard. Now, more than ever, it is important that we stand up for ourselves. Since the NIMH is operating on low budgets, we need to understand that our disorder will only be researched if we are willing to take the steps to help our selves.

“Our brain differences have made our lives, relationships, and everyday functioning change. Instead of acceptance we have been faced with denial.”

Right now we are facing fights from many angles. Dr. Jennifer Jo Brout, in an article for the NY Observer, expressed her concern about misophonia and misinformation when it comes to treatment and coping:

Misophonia has been hijacked by a bevy of charlatans, many with spurious credentials selling “cures” for the disorder. On social media and on the internet, “specialists” of various kinds with no apparent expertise deluged me, selling misophonia “apps” and potions that promised to “calm misophonia rage.” I’ve seen a lot of BS treatments for many conditions, but the difference here is that these fraudsters monopolized this disorder. They got to the internet first, before academia and before any doctors, and positioned themselves as experts. When you Google misophonia, you get them. When you read mainstream articles about misophonia, you see their treatments and groups referenced in the articles. Instead of informed doctors or researchers, you find people promising “cures” to desperate sufferers. I know people who have been have bilked out of over $10,000 (and more), never mind the emotional cost incurred. — Jennifer Jo Brout, Psy.D.