Dear Friends, Family and Co-Workers

letterMost people have never heard of Misophonia, including medical professionals. If you try to explain it to them, their first reaction is “tune it out”, “ignore it” or even “get over it.” If ONLY it could be that simple. Many physicians brush it aside, try to treat it as a mental illness, making it virtually impossible to gain any medical perspective.

Dear Friend, Family Member or Co-Worker,

I suffer from a very rarely known disorder called Misophonia. Although the word translates as “hatred of sound”, that’s not quite accurate, it is more like being tortured or tormented by sounds. Misophonia causes severe negative reactions to sounds such as dripping water, chewing, snapping gum, or repetitive noises. People with Misophonia can become instantly irritated, enraged, or even panicked when they hear their trigger sounds.  In a nutshell, certain “trigger” sounds travel to a section of the brain that sends off a RED ALERT, an “alarm.”  I do not feel as if I am in any physical danger, but that is the signal my brain receives translates the sound to DANGER and then it reacts in a “fight or flight” response. Depending on my general state of well-being, stress level, etc. I can react in different ways. On the milder side, you may be lucky enough to get a nasty look, I may “snap” at you, or I may have the need to run as far away as I can. Sometimes it is not possible to walk away, and I try, believe me, I really DO try to hold these feelings of anger and rage inside. Sometimes I just have instant reflex reactions. Some sounds cause me physical pain, my ears will hurt, and dizziness, stomach pain, and nausea can set it. At times I may start to cry uncontrollably, going into a full blown panic attack and at times a complete meltdown. Please know- IT IS NOT YOU, it is the SOUNDS. My brain cannot process a reaction to ignore or tune out the triggers. The sounds pick away at my brain- pick, pick, and pick until I just want to explode. I also experience visual triggers, like when you put your hands near your mouth, or continual tapping of your foot. I suppose that is my brain anticipating the noises that may happen. Sometimes I can look away, and I will be okay as long as the sounds do not follow. Can you imagine how difficult it is live with the constant anticipation that a random noise will set you off? The fear that you might instantly snap in public, or some night so nice words may spout from your lips without thought constantly on your mind.

I know it is difficult for someone to understand. If I did not experience it, I would probably think it was insane too. In all honesty, I grew up thinking I was an intolerant monster with a very bad temper until the glorious day that I learned it is an actual condition. What a relief! Misophonia is very real, very painful and I really need you to TRY to understand and offer some consideration so you can help me try to live a normal life. How can I explain it so you can understand?

My go-to explanation is for you to imagine a swimming pool, when you jump in the water is shockingly cold, but after a few minutes, you are very comfortable. Relating the water to trigger sounds, for someone who suffers from Misophonia the water gets colder and colder until you are freezing.

Another way to try to understand is to imagine scratching a chalkboard, a sound that tends to make most people cringe. For someone with Misophonia, amplify that times a thousand and imagine the scratching goes on nonstop for hours. It is maddening! Are you starting to understand?

Have you ever been so riveted while reading a good book, or in deep concentration working on something and someone comes up to you and starts to tap on your shoulder? Tap tap tap… makes it very difficult to concentrate, doesn’t it? After a few minutes of that nonstop tapping, you are ready to snap, am I right?

Think of Misophonia as an allergy to sound. It causes an extreme negative reaction. At least with an allergy, you can try to avoid your allergen. There are some things you cannot avoid, like a bee sting.  If exposed by accident you can use an epi-pen. Misophones do not have that luxury. Actually, a bee sting is a wonderful example. If you have an allergy to bee stings and a bee is heading towards you- you can run away. But it can still sting you. We can try to run from our triggers but often it is too late, the “sting” hits us at exposure. Then our “allergic reaction” occurs where we can go from being the nicest person in the world to a maniacal monster in a few seconds. This is not a reaction we want to have, we do not enjoy it when we snap at you and after we have had the chance to calm down we really do feel remorse for our words or actions.

I used to enjoy many sounds, however, through the years my brain seems to translate these sounds differently for me. This is not something that I have any control over, I wish that I did. Life would be so much easier. I did not choose this disorder, I did not “make it up” and I am certainly not “trying to get attention.” I want to be able to live my life without worrying that I will be triggered at any given moment. There is no magic pill that will help me cope, there is no treatment. Scientists ARE doing research, but the brain is such a complex organ. Hopefully one day there will be a cure but until then I continue to suffer in silence.

I want nothing more than to spend time with you, go places, enjoy dinners at restaurants and family parties. But because of Misophonia, these simple everyday events are major challenges for me. Please understand when I need to step away or if I need time for myself or if I need to decline your invitation. It is nothing personal. If you see that I am starting to get agitated maybe you excuse yourself to allow me time to decompress. I am not demanding that you to change your world for me, I am asking for simple things, please do not chew with your mouth open, and please do not pop/snap your gum. If I explain to you that something triggers me, please do not make those sounds because you think it is funny. It is NOT, it is very cruel and abusive. Would you walk up to a chemotherapy patient and laugh at them because they lost their hair? So what makes you think it is acceptable to shove a handful of chips in your mouth and talk to me while you are chewing?

How would you like it if someone preyed upon your weakness and taunted you with it?

With these explanations in mind, please accept me for who I am, a Misophonia sufferer. Please don’t make fun of me, or taunt me. I have accepted myself, and I hope you will accept me too, Misophonia and all.

Sincerely,

Vicki

A lifetime sufferer of Misophonia

Vicki Sladowski
My name is Vicki and I am a lifetime sufferer of Misophonia. I grew up thinking I was a mean, hateful monster, only recently did I learn that I have Misophonia. Like most sufferers, when I found out I had an actual disorder I was so relieved to know that it is not my personality, and most importantly there are people who UNDERSTAND what I am going through and I how I feel. We are not in this alone.