I recently had a conversation with a notable researcher in the misophonia community. I won’t name his name, but he responded to the petition in favour of misophonia accommodations by telling me that he thinks accommodations are, “counterproductive, hinders effective treatment, and if it is at the high level it prevents success”. To me this is a strange claim since we do not have an effective treatment for misophonia to hinder. How do you hinder something that has yet to actually exist? I am also not sure what level of success that an accommodation can stop, particularly since most people with misophonia simply want to live their lives without feeling grueling torture.
If researchers are worried that overaccommodating will lead to unrealistic expectations of the world, I think that’s fair, but I counter the point by saying that alleviating your suffering in some aspects of your life can make quality of life better over-all, and then, your nervous system is less taxed and more able to handle the bad situations as they come.
One MD who signed the petition had the following to say, “Would you tell a person who needs a wheelchair to get up and walk? No, this would be disability harassment. Failing to accommodate a neurological problem is abuse.”
The opposite of accomodations would be to desentitize to the sounds. If this worked, I think all of us would be cured because most triggers for misophonia are ever-present. This is not some phobia that we can avoid the stimuli and live our lives in fear. Everyday sounds (and visuals) are causing us great distress, and the longer our nervous systems are taxed, the worse we feel. For example, after a long day of being triggered I will simply shut down and no longer be able to think properly or respond. I practically feel catatonic, and then I get a migraine and sick.
We also need to stop ignoring decades of sensory processing disorder research that talks about using interoception and proprioception to lower arousal, rather than simply looking for random solutions where they don’t need to exist. The willfull blindness of researchers to ignore over 40 years of research is frustrating to say the least. Auditory over responsivity was not a new phenomenon before being carelessly named misophonia in 2001, but now we are doing new research without any heading, completely disregarding the work of Lucy Miller and other sensory researchers. Let’s stop pretending that there is no research to look at and actually start talking to other researchers. Everybody wants to be the one to ‘cure’ misophonia, and in the meantime, they are making suggestions that actively harm our communities. Enough is enough.
An effective treatment for misophonia does not exist. If we knew about it, then we would gladly share it. So, what treatments are accommodations making less effective? I’m not really sure how it could since the disorder is in a preliminary stage. Yet, what we do know is that the quality of life of these very real people is made better by making adjustments to their environment. All these researchers are doing is adding more shame and stigma to an already misunderstood phenomenon. We’re struggling enough… let me keep my headphones, earplugs, and ability to leave the room!
You can find the petition against the accommodation study here:
https://www.misophoniainternational.com/petition-misophonia-is-not-made-worse-by-accommodations
