For those that don’t know, Misophonia is (most-likely) a neurologically based disorder that causes an aversive reaction to audial and visual stimuli. In laymen’s terms this means that noises like tapping, whistling, crunching and chewing can cause a fight/flight/freeze reaction. There is no cure or treatment.
A disorder callously dubbed “Sound Rage” by media, misophonia has received marginal attention. Most stories follow a similar rhetoric. A person is so “enraged” by sounds that their normal day-to-day life is impaired. A special focus has been on “chewing rage.” Media has marveled at the thought of an apple, popcorn, or crunchy food causing a severe aversive reaction. Reporters are not entirely to blame for this. Sufferers can become confused too. This can be attributed to information that has circulated and not been vetted. It could even be attributed to the name itself, meaning “hatred of sound.”
Though, we don’t really hate sound. Actually, some of us may be bothered by sensations entirely out of the realm of auditory. But, spreading like wild-fire, the concept of “sound rage” has mesmerized the curious, and added more paralysis to an advocacy world already crippled by lack of public tolerance and belief. As an advocate, I feel it is part of my job to help people to understand the disorder. I do not necessarily blame the media or the public for their lack of understanding ― after all, science is only beginning to understand the condition.
Misophonia sufferers, which may be overlapped with SPD SOR (sensory over-responsivity), commonly report several “triggers” that have nothing to do with sound. In fact, most of the senses seem to be incorporated. Second to auditory stimuli, visuals have been reported as highly intolerable. This could be swaying motions, tapping (even without sound), or legs shaking. While some of these may have a sound attribution, it is not necessarily always the case. While there may be more senses involved, the following are widely reported.
Sound: Sound triggers are widespread and often repetitive. Tapping, chewing, breathing, coughing, snoring, clicking, jingling, sirens are all common triggers.
Visual: Can be related to sounds, but not always. Tapping, swaying, leg bouncing, foot shaking.
Touch: Often under-reported, touch symptoms can feel almost creepy crawly. Synthetic fibers, nylon, denim, wet fabrics, porous materials, and often velvet.
Smell: May be mistaken for “scent allergies,” scent triggers commonly cause a headache or nausea. Often brought on by chemical-products like perfume, but they can also include natural products. Axe body spray, cleaners, fabric softeners, lavender.
When living with a sensory disorder, especially misophonia, there is a lot more to worry about than just sounds. While the sounds (and visuals) are most life-altering, that does not mean that the other symptoms are not important. An over abundance of these triggers has been known to cause migraines, fatigue, and nausea. The sensory system is a delicate balance, that few aside from occupational therapists understand. Susan Nesbit, OT, advises persons with misophonia, “When possible, modify your environment to reduce the frequency (number), the intensity (strength), and the duration (length of time) of the triggers. Modifying the environment is helpful for persons with misophonia and/or SPD.”
Education is the most powerful tool when it comes to understanding sensory disorders like misophonia. More research is needed, and especially, more understanding. As the scientific community becomes more aware of the sensory world, it is important that advocates are research out and bridging the gap in understanding. Misophonia is not only NOT sound rage, it is much more encompassing.
Misophonia is the rope that binds me.
You hold me back and toss me into a dark basement. You have kidnapped me and you continue to hold me. There is no Stockholm Syndrome. If I could escape you I would never come back. I would not wish for this on my worst enemy.
If I didn’t have you I could sit in a classroom. I could attend family meals and I could live my life to the fullest. If I didn’t have you, I wouldn’t feel trapped in my apartment. I wouldn’t feel concerned that I’m alone and unhappy. Some days I feel as though I have given up a lot for this disorder. I spend most of my time alone. I spend my days wondering what life wouldn’t be like without this disorder. I am not unhappy, not entirely. However, today on a hot and beautiful day I could not swim at the beach because there were too many others. I feel uncomfortable in my own skin, brain, and body. Not only do I suffer from audial triggers, I also suffer from visual ― I feel as though I am trapped constantly. The world around me is a sharp, bitter, devastating blow.
Misophonia means the world around me is a sharp, bitter, devastating blow.
Misophonia does not have to take over my life. There are things that I can do to make it easier on myself. But no matter what happens there is going to be a sacrifice. This is why I fight so vehemently for awareness. I know that misophonia is not always sunshine and roses. Misophonia is a troublesome disorder. My sensory issues go far beyond the grasp of sights and sounds. I feel it every time I touch water that is too hot or cold. I feel it when velvet touches my skin and makes me cringe. If I step out into the hot summer heat after my blissfully air-conditioned atmosphere I can feel the hold on my body. All of my senses are subject to sensory overload and under-load. If I do too much I feel my body pull out from under me. My back crumbles under the pressure.
I wish I had never heard of misophonia. I have spent the past few months of my life fighting for a cure. I have been fighting with everything I have. Many days I have spent 16-20 hours in a row, at a computer, trying to help with advocacy for this condition. I am not only doing this for the other sufferers, I am doing it because I have little choice. If misophonia is never cured, I will have to live with it for the rest of my life, and I am not sure that I can handle the implications of that revelation. This disorder has broken me in ways that I never thought possible.
I never expected that anything could influence my life more than anxiety and depression already have. Not a day goes by where I do not face the pain of misophonia. No matter where I go, what I do, or how hard I try to avoid it, another trigger will be around the corner, and then another. This can lead to a lot of isolation. Sometimes I do not leave my house for weeks on end, other weeks, I try my best to get out, but become broken from the pressure of trying. The guilt and hopelessness become so overwhelming that I want to fall asleep, and stay there, for days on end.
It started slowly… and then… it came to be stronger. Each movement and noise started to slowly encapsulate me. I felt threatened by its presence, suddenly, I could not avoid it. Why now? Why was I suddenly being tortured? Searching for answers has led me to an understanding and respect for research. Disorders are not cured by good faith alone, it takes many dedicated professionals and sufferers working together.
Although I am still living with this disorder I have hope. Due to the wonderful professionals on the IMRN advisory board I believe we may have a future with greater understanding of my disorder.