In my blog, I have featured many articles about Dissociative Identity Disorder because it is a diagnosis I have intimate knowledge about. However, DID isn’t the only diagnosis I wish to speak about here, as the stigma and heartbreaking trauma brought on by many diagnoses must be spoken of so that research can be encouraged. I met Shaylynn Hayes on Twitter. She was intensely interested in Dissociative Identity Disorder as she is writing a book in which one of the characters lives with the disorder. In the course of speaking to her, I learned she lives with a disorder, that until that day, I did not know existed. I admire this young woman very much, as the disorder Misophonia must be pure hell to live with. I encourage anyone who reads this article to please, if you are at all able, pitch in either time or money to help with the research to help the people who must endure the torture these folks live with daily. Read on, and remember, there are many things in this world that we are not immediately aware of but must, in our humanity, concern ourselves with. Misoponia is one of those things.
Misophonia Means Living Without Diagnosis
I have Misophonia. Misophonia is most-likely a neurological affliction that causes a fight/flight/freeze response to otherwise normal visual and audial stimuli. As of now, there is no official consensus on what exactly causes the disorder. Though it was coined in 2001 by Jastreboff and Jastreboff there has been little research published under the disorder’s current name.
Since my disorder is unknown by most doctors it is as though I have been lurking in the shadows. It’s an interesting life full of uncertainty. Will there be a cure? Maybe. Maybe not. The reality is that right now, there is little information about what’s going on inside my body and my head. I know it’s real. I know that I am struggling but there aren’t always enough words to help me explain to others. I try. That’s for sure. That doesn’t mean I feel that there isn’t more that I could be saying. More than could be done to help us all reach out and live openly and freely.
Researchers such as Joseph E. LeDoux and Stephen Porges have been researching auditory over-responsivity. However, the name of the disorder matters little since researchers are more focused on what’s going on inside the brain and body and not merely perceived notions and sweeping generalizations.
Many that sufferer from misophonia struggle with similar symptoms. Commonly, tapping, whistling, chewing, and other repetitive sounds cause this severe reaction. Though the disorder manifests with aversions to sights and sounds, many are proposing that its cause is physiological and not psychological.
It’s not your doctor’s fault that they’re unaware of Misophonia. It’s not the public’s fault that they don’t know. We, as sufferers, have a duty to ourselves to reach out and ensure that the right research is being facilitated. If we don’t we may very well be left in this abyss for a very long time. Autism did not come to the light because of the efforts of outsiders. It was parents, sufferers, families, and loved ones that came together and said: enough is enough, hear our voices.
There are currently no experts on Misophonia and no one doctor or researcher can claim that they have all the answers. This is also true of treatments and coping methods. Before trying a treatment please ensure that you are aware that new disorders not only carry a lack of treatment but also a risk. If you are trying experimental treatments please be wary. If you feel uncomfortable with your treatment provider, do not hesitate to refrain from continuing.
Having Misophonia has meant living in a world without diagnosis.
Lesser known disorders are hard to handle. Each and every day I am confronted by a slow torture that cannot be met with medical advice. This is why we’re fighting for research. Without research and informed discussion we will never have the support of medical professionals. Unless a disorder has been properly studied and classified, it does not exist. Research is not just about a cure. Academically, medically, and essentially, without the groundwork for research, a disorder is nothing.
Right now, with the small bodies of research that exist we are left with very little. Many of the studies did not have enough evidence nor enough persons reviewed. Essentially, we are little more than a name. Yes, we know that we are struggling but as far as the medical community goes, we are non-existent. The studies that are being facilitated right now through the IMRN hope to change that. However, without people standing up and supporting our researchers we remain stagnant.
Any movement for awareness should be met with research centered activism. Misophonia will never be cured unless there are people that are willing to lay the groundwork and demand changes for our community. If this sounds like a tall order, that’s because it is.
Living with a disorder that doesn’t have a cure is unimaginable. At times I have been called overly-passionate when it comes to Misophonia and the advocacy surrounding it. I have been accused of being too dedicated and even told that I should back down and let things go slower. I can’t do that. When I say I can’t, I’m not doing so in the stubborn kind of way.
Misophonia has taken away from me more than I care to admit. Due to this disorder I have been saddled with an unfortunate situation. I’ll be honest, I’m fighting back tears as I write this. My eyes are wet with the grief that comes with realizing the impact that this disorder has had on my life.
Misophonia terrifies me. Past the amygdala and the fight/flight/freeze response I am petrified. Like the impact of a basilisk I feel my nerves pause. I feel my heart skip beats. Why? Because if this disorder continues to get worse I am not sure what else I will lose. How will I travel the world like I’ve always planned? Will I ever sit in a café in France? Or, will I ever dance in the streets of Latin America? If I have a say I will…
This is why I’m fighting so hard. Because I have to. I need a cure because I know that my quality of life is hanging in the balance. We need to help with research because that is the way to find a cure. Luckily, the research at Duke University holds much promise.
I don’t think I’m able to stop fighting. If I stop fighting for a cure than I have stopped fighting for my future. I’m not ready to do that.
Shaylynn Hayes is a 23 year old writer, advocate, graphic/webdesigner, and student. She is the Editor-In-Chief of Misophonia International and Author of Full of Sound and Fury: Suffering With Misophonia. I am also the founder of www.lovenotstigma.com an advocacy project that aims to share mental health stories, lift up advocates, and create a world that promotes love instead of stigma. Misophonia has created trials and tribulations, but it’s also changed her life in good ways. It is due to Misophonia that she ended up switching schools, but it is also the reason she has been able to focus her voice and try to help others that struggle with the disorder. Alongside Dr. Jennifer Brout, Shaylynn runs the Newssite and adovacy site, www.MisophoniaInternational.com. The site focuses on Research, Coping, and Awareness for the disorder. Shaylynn has also been actively involved in the International Misophonia Research Network, founded by Dr. Jennifer Brout. What used to be a life-ruining disorder has become an interesting and defining adventure that has proven that the things that are “ruining our life” may very well be creating a new, interesting life in the place of the old.
I added the following link to help anyone who wishes to donate even $1 to research fora cure to Misophonia. Shirley