Where to find the best online misophonia support groups

by | Apr 18, 2016 | Articles | 12 comments

Where to go for positive misophonia chat

The Internet is wonderful resource for information about misophonia… but it can also be a bit of a minefield.

If you’ve only just learned that this condition has a name, and you’re looking to connect with others, it can be hard to know where to go to get sound advice.

That’s why I’m compiling a list of safe places here where you can speak to other who have misophonia or Sensory Processing Disorder without the fear of being judged, given bad advice or trolled.

Misophonia Forums and Facebook Support Groups

Allergic to Sound Misophonia Forum

Since you’re already here, I’ll start with our forum. If you want to connect with others then you are always welcome to do so, either in the comment threads or the dedicated forum. This is a safe space to communicate to others with the condition and it’s moderated by me – which means that no posts by trolls, bullies, racists or sexists ever see the light of day.

Misophonia Research Network

If you’ve been a reader of Allergic to Sound for any length of time, you’ll know I’m obsessed by the science behind misophonia and the research that’s taking place. If you’re anything like me and you want to get a) geeked up and b) find out how you can help, then make sure you check out this group. This is where the latest research updates, interesting articles and funding drives get posted.

Sensory Processing Disorder Adult Support

I highly recommend checking this one out. It’s becoming increasingly clear that misophonia comes under the Sensory Processing Disorder umbrella. While many of the SPD groups on Facebook focus on children and parenting, this one is specifically geared towards adults. There’s a really friendly and proactive feel to this group and and if, like many other misophones and folks with SPD, you have sensitivities to visual movements or light or touch you’ll find this really interesting.

Meetup Misophonia Groups

‘Meetup’ is an increasingly popular app that connects people with common causes or interests, typically with a view to meeting an offline ‘real world’ events and gatherings. There are now a number of misophonia ‘meetup’ groups in the UK and USA and no doubt this will expand. Obviously please super careful when meeting anyone offline. Make sure you are in a public place and that loved ones know where you are.

Why such a short list?

Unfortunately some misophonia-focused forums and Social Media channels have descended into giant misery fests, with lots of finger pointing and blame and misunderstanding. This can be really damaging – especially the trend towards blaming people as triggers – because it exacerbates anxieties… which then creates a myriad of new problems.

It’s a bit like going into the doctor’s surgery with a broken thumb… and coming out with 300 anxiety disorders

Let’s not sugar coat it, misophonia can be overwhelming and it’s good to have the odd moan and joke with fellow misophones. However, the shortcut to living a happy and fulfilling life with misophonia is to focus on acceptance and constructive coping strategies.

Focussing negative energy on other people making everyday sounds rather than on the disorder creates a viscous cycle of blame and anger. It also alienates people who are already feeling very confused and alone from their families and loved ones. In other words MASSIVE MISERY FEST. The groups I’ve recommend above have been personally vetted by me and shortly after writing this The Misophonia Research Network and Positive Misophonia kindly added us a partner. That’s a digital waxy seal of approval.

I hope you found this helpful. Let me know if you’ve come across any other helpful and constructive misophonia/Sensory Processing Disorder related forums.

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12 Comments

  1. Cleo

    At last.
    I have a group of people to connect on this!

    Reply
    • Lyn

      How do I talk to others with misophonia?

      Reply
      • Rita

        I thought there was something wrong with me. The sound of my husband eating cereal and playing around with a peach/nectarine bone in his mouth repulsed me to the point I could scream at him, or worse. How do I combat this?

        Reply
  2. Debby Quashen

    I’d like to know if there is a group that meets in NYC? I’ve had this condition my entire life. It’s so isolating.

    Reply
  3. Lynn

    Hello, I am interested in in a group meeting near Charlottesville, VA.
    I am not on FB anymore and many groups seem to be connected to FB.
    I am also interested in the annual convention but cannot find information about 2019.
    I have had this problem all my life… I am 72 and it seems worse lately. I have the white noise machine, ear plugs, of course, but bass boom noise still comes through….that being my major trigger.
    Thanks for letting me vent!

    Reply
  4. Duia

    Is there a support group in Utah? I’m relatively young but I can hardly handle school because everyone is chewing gum and I need some sort of support because even my friends chew gum and they try to be supportive but they still chew gum with their mouths open without realizing it and I just need a support from all of the dumb kids at school. Sorry, but yeah, is there a group somewhere in Utah?

    Reply
    • Duia

      I also do not have social media accounts like facebook, twitter, instagram, or other social media things sooo…

      Reply
  5. Nancy Gatta

    I have quit Facebook, so e-mail is really the only option right now. I have tried several psychologists and psychiatrists to no avail. I used to numb myself with wine, but I gave tthat up. I am really struggling with futility and inner rage. Triggers keep multiplying. Every day is a struggle.

    Reply
    • Allergic to Sound

      Good for you Nancy. I recently installed a browser extension which blocks Facebook on my computer. Stops me getting lured into its murky algorithmic outrage machine when I’m twiddling my thumbs. As for miso battles, I wish there was a silver bullet but I’ve put all the best coping mechanisms I’m aware of here if it helps: https://allergictosound.com/coping-with-misophonia/

      Reply
    • Greg Grant

      I agree I also wish important groups would not use facebook like they do so often.
      There are many other ways to set up a forum without all the baggage.
      Facebook’s abusive, predatory and manipulative behavior is widely known, nobody can be blamed for refusing to use it.

      Reply
  6. Becki Stolp

    I am really glad there is an actual name to my little issue as I use to call it. It is nice to know I am not the only one suffering. I always thought there was something seriously wrong with me. That I was not right and why was I the only one. I suffered in silence for many many years and I have finally find a way to live with this. I always have my ear buds with me especially at work since I have a co worker that loves to eat sunflower seeds. The popping of her opening the seeds makes me want to scream. We will not even talk about people chewing gum or my hubbie eating. Just writing this is making me cringe. I am not on Facebook or Twitter anymore so I need to find a way to connect to others.

    Reply
  7. Erica

    Please recommend the best noise cancelling headphones. My Bose headphones just broke and I need to replace them. I fly internationally regularly and there are so many triggers for my misophonia that I dread it. The Bose are pretty good but is there something better?

    Reply

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