The Sounds of Our Crisis: Living with Misophonia

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Everyone has a trigger… that one thing that will make you go apeshit.  The emotion you just can’t cope with.  The monster you were sent to slay.

Mine is feeling silenced, my voice stolen.  Muted. Dismissed.

So naturally, I have  a child that hates the sound of my voice.  She suffers from misophonia, which makes her go crazy if I talk in the car while she is in the back seat.  She can’t stand to hear me talk on the phone, or converse with Rick downstairs on the couch while she tries to fall asleep.

Is that irony?  Divine cruelty?  God’s stab at satire?

Maybe.  But it also gives me clear direction…it demands that I find a way.   I have a little corner here, my own piece of the internet, and all I can do is write about what is happening with honesty.

I’m scared.  Driving home with my girls squabbling in the car, the fear creeps in.  It makes me angry and I am yelling at them before we have hit the driveway.  We have been together for 4 minutes.

We are emptying the dishwasher, setting the table for dinner.  Lydia stomps down the stairs, on the defensive.  She is singing loudly, slamming things to the ground, shoving chairs into the table, she crashes through the kitchen… the fear grabs me by the throat, and I struggle to maintain calm.

Lydia hisses at Carly as we sit in our chairs, and jumps to her feet quickly, almost knocking over the chair, slopping water out of the glasses.  About five months ago, Carly was added to the growing list of things that provoke Lydia’s misophonia meltdowns.  I take in a few gulps, the panic I feel tightens every muscle in my neck, strangling me.  She grabs her plate and kicks the swinging door in, stomping.  She grits her teeth but it doesn’t muffle the  furious screech.  We all freeze in place.   I put my hand on Carly’s back, and the small gesture of compassion breaks her composure.  She whimpers, and then grunts angrily.  Rick hands me Lydia’s  fork and napkin.  I snatch them from him and storm into the kitchen.   I try not to throw them at her.   She is cowering in the corner,  plugging her headphones into her iPod, turning it up so loud I can hear Bruno Mars damaging her eardrums.  She looks at me with disgust.

It hurts.  I can’t help it.  I feel wounded by her posturing.  Her revulsion.  Her aversion.  It’s an old wound now, scarred over and reopened by her sharp looks and high-pitched screeches over the last 18 months.  It’’s raw right now.  Because she is triggered by Carly too.  And every time she hurts my adult feelings, every time I must reach deep into the best, most mature part of myself to process this hurt and turn it into much-needed compassion for my glowering daughter, I think of Carly.  Her inability to process.  Her young spirit, and what this rejection must be teaching her about herself.  The complexity of the emotions swirling around our dinner table is nauseating.

I retreat to the dining room, and we eat, minus one.  While we eat, I struggle to pull my mind out of the next 10 years.  How will we survive this?  What will this do to us?  What will happen to my little girls?  To me?  I look at Rick, my eyes communicating my desperation.  He tries to ground me into the moment.  “Take a bite.  It’s just dinner,”  his eyes say, pleading.

It doesn’t feel like just dinner, it feels like our whole lives are being swallowed by this crazy, mysterious misophonia.

Sometimes, I can not keep the monstrous fear at bay and  I lose it.  Most of the time, it looks like anger.  I rant. I watch Stella’s eyes widen as she hears, “I’m so damn sick of this shitty behavior!”   The words taste terrible as I spit them out, aware of their sharp edges.     This extra loss of control  must do wonders for all three of my girls’  already tender, aching spirits.  Their appetites.   Being angry with Lydia is like being angry when a wounded animal snarls at you.  She is hurting, I know this.

Sometimes, the tears just roll, drip into chicken orzo pasta, and everyone acts like they don’t notice.

Sometimes, we pretend it isn’t happening.  We spend the meal sharing things we are grateful for in a clockwise, orderly fashion.  Stella gets up, runs to the kitchen, and makes Lydia lift her headphones and give her grateful words so she can report to the group.  The grateful list is building up, the room tightening with tension.

After dinner, when the clicking of the silverware against the plates stops, when the sight of Carly chewing her dinner is gone, when the sound of me taking a sip of water is over, Lydia goes into sweetheart mode.  She is throbbing with guilt and shame, she is not oblivious to the pain she is causing.  She snuggles up to me, she brings me school papers with great marks, she sweetly engages with Stella, offering to help her get her pj’s on. She tries to make Carly laugh.   She leaves us love notes, to smooth out the hurts.

I often find Carly sulking in bed.  The rejection is getting to Carly.  Normally so passive, so unexpressed, so quiet and easily content, Carly is beginning to show her pain.  She is frustrated and pissed off, she cries in an angry fit, kicking at my attempts to hold her.

“She HATES me!  She thinks I am disgusting!  And I am not doing ANYTHING!”

She folds her arms defensively, growling at me.  I try to explain.  But the explaining doesn’t soothe.  I know that, as I ache too.  I feel rejected.  I feel terror about how Lydia’s life will unfold, how she will manage.  I feel the weight of the damage she is doing to her sister, unintentional, but real, slam me in the chest.

Oh my GOD, what are we going to do?

It is not breaking my heart…it is eating me alive.

I think about all the families out there, trying to hold on.  Carrying their own burdens.  Their own hurts.  I am grateful for the health we do have.  That my girls are doing well in school.  They enjoy sports and friends and music and movies.  I think of people I know.  People I know who have children with closed  head injuries.  Autism.  Feeding tubes.  Wheelchairs.  Brain damage.  Schizophrenia.  People I know who have to liquefy their child’s meals and feed him through a straw.  Or are acting like their son’s pancreas, spending sleepless nights on his bedroom floor, praying the numbers go up, one hand ready to summon an ambulance.

These thoughts do calm me.  I do feel genuinely grateful.  I feel relief that it is not me.  And then I cross my fingers, knock on wood, send up a half-hearted prayer.

And please bless that will never be me.

But it does not drain me of my fear.  It does not help me feel capable of handling my own life.  My own daughters.  My own burdens.

I used to have a recurring dream, showing up when I was a small child.  It has haunted me for most of my life.  In the dream,  I am going about a normal day, when I notice that a tooth is loose.  And when I wiggle it, the tooth pops out in my hand.  Horror fills me as I realize that the tooth has come out.  My permanent tooth!  I tell someone… whoever is with me in the dream.  They seem unconcerned.   I dial the dentist’s office.  And while I scramble to tell people what is happening, or make an emergency appointment, my teeth become loose and fall out, one by one.   I feel completely out of control.  Helpless and panicked.  Permanent damage is being done, and there is no reaction, I can’t stop it, I can’t find someone who can stop it.

I haven’t had that dream for many years.  Maybe because I have climbed inside of that nightmare.   I am living in it now.  That feeling of helplessness and desperation.   We are living with something no one has heard of.  There is little known about it.  Our doctors haven’t heard of it.  Psychologists.  Therapists.  The few that know it, can not agree on what it is.  A psychiatric disorder?  A neurological disorder? A hearing problem?  A sensory integration disorder?  An autism spectrum-symptom?  A behavior problem?  The sensation of absolute helplessness is paralyzing.  I have no control.  I have no where to turn.

Why I am writing this?  This private, personal account of what really happens at our house, around the dinner table?

During the summer of 2012, misophonia had already slithered its way into our lives.  It’s presence a snake, coiled and waiting.  Watching us.  I had a sense it was there, but only that unease that comes as a premonition before the strike.   When it struck, here, and here,  I did what most sane, reasonable parents do.  I turned to the internet.  And there, I found almost nothing.  The info that I did find was less than encouraging.  It still haunts me, the things that I read that summer.  About families that can not live together.  About kids who leave home and never come back.  About mothers or fathers or siblings that are lost to each other, unable to overcome these tiny, imperceptible, everyday noises that scratch at Lydia’s brain like nails on a chalkboard.

There was a blog, I wish I could remember the name of it.  One blog.  And the mom who wrote it, posted about her son, and his misophonia.  All of the things they had tried.  All of the medication, and therapies and specialists that were not helping.  About dinner time.  But what left the lasting  impression was one sentence.

“We are in crisis over here.”

It was the most comforting thing I have read about misophonia.   I think of her often, and her willingness to admit it.  The crisis.  “Me too,”  I thought.

Knowing I was not alone was everything.

We are trying things.  We are draining our energy, our time, our savings account, trying to find help.  On the outside, we look like a normal, everyday family of five.  Mini van, soccer cleats, playdates, preschool art projects, birthday parties, piano recitals.  On the inside, if you came to visit, you would see a functioning family.  Home cooked meals, sibling squabbles, love notes, piles of laundry, homework unpacked on the coffee table.

Maybe we are a normal everyday family of five.

And everyone has something that makes them feel out of control.  Helpless.  Terrified.  Alone.

Are we all there?  Walking around with our teeth falling into our palms?  Clinging to the stories of the other people?   Gathering gratitude like seashells in a bucket, talismans of the burdens that we don’t have to carry?

The one thing I can do is step forward.  Use my voice, and say it when I can.

Me, too.   Me too.

To learn more about misophonia:

This NY Times article

misophonia.com

The today show segment, here   Warning:  trigger sounds are played.

24 thoughts on “The Sounds of Our Crisis: Living with Misophonia

  1. Thank you for such a brave post. As another parent of a child with misophonia, I find the dinner scene very familiar. Hang in there.

  2. I feel your pain! My son has Misophonia. His trigger-sounds are mostly machine-made so are crisis is a bit different. I got the chills reading your post as I can so relate. I am so grateful that things could be worse but we are definitely in crisis. There are several online support groups that I belong to. I highly recommend the one for parents.https://www.facebook.com/groups/620276931320095/. I also find that keeping an online journal has been a great release. Hugs!

    • Thank you for your comment and suggestion of some support groups. I have not joined any as of yet, I think I am a bit fearful for some reason. I have a hard time hearing about how bad it can get for some people without getting completely overwhelmed thinking of how we will manage to raise Lydia, and all the “what ifs.” But then, it is so nice to hear from all of you and feel much less lonely. Thank you.

      • Meg,
        I found out about your post through one of my FaceBook support groups. One of the very best things I have done is to join several online support groups. Sure there are a lot of scary stories (we are one of them) but there is also much hope. It was helpful for me to be prepared that the next few years will be tough but things will eventually get better. Knowledge is power and it has been an empowering experience to be able to compare notes with others in similar circumstances. I hope you can overcome your fear to join at least one support group, you’ll be glad you did!
        Bonnie

  3. when i started having triggers, was mid 60’s, our family, 7 of us, ate at the dinner table and we were taught to chew with our mouth closed and not talk with food in our mouth, my dad chewed with his mouth opened and the sound, o.m.g. but we couldn’t say anything, if i could have, i’d have eaten alone someplace, to this mom, let her eat by herself and everyone will be better for it.

    • Thanks for your comment. We do allow Lydia to eat in a separate room from everyone else, with headphones and an iPod. We miss having family meals together, and I am not done mourning the loss of what I always valued as an important family ritual. But, it is necessary.

  4. Your post has brought me to tears. I was…am your daughter. I did not have as many triggers at that age but always had trouble eating with my family. My reaction to triggers havegotten stronger with age (the one time I sought a therapists help she told me to meditate and I knew she didn’t understand) My husband and oldest daughter trigger me. My mother triggers me the worst in regards to eating. I cant imagine being triggered by loved ones’ voices. I understand your daughter’s frustration and pain. I can imagine your pain. Thank you for writing this blog. I have just round out that what I have has a name and I feel a little less “crazy” to know I am not the only one.

    • Thanks Kirsten. It is a relief to know that this condition has a name… I also have many sensitivities and I felt really bad about myself and my inability to handle silly things like tapping pencils or ticking clocks… until my daughter started exhibiting misophonia, and I realized it was not just me being bitchy :)

  5. I found your post linked on a Facebook group for misophonia, and wanted to say thank you for writing this. I’m a female in my early 20’s that has suffered from misophonia since age seven or so, and your writing brings back many memories of how difficult this condition made life for my own family. I feel for you, and all of the parents and siblings that raise us misophoniacs, so very much – I’ll never fully understand the other side of the fence so to speak, but thank you so much for trying so hard. It must be so difficult. I think I wanted to comment here to leave you with some hope. When I was young, my misophonia was so much harder to handle, and I often reacted as badly as your Lydia does now. I got better at coping through my teenage years, but I know I was still a little jerk plenty often. But in adulthood I’ve gotten so much better about understanding my own reactions, and while the reactions to noise that I face haven’t lessened, I’ve learned much healthier ways to deal with it. I live a happy independent life and with a good relationship with my family. I know it doesn’t get better like this for everyone who has misophonia from childhood to adulthood, but for myself, finding independence and coping mechanisms, along with understanding friends and family, has made life so much better. In any case, thank you so much for sharing your experiences. I’m sending you and your family positive thoughts.

    • Thank you so much for your encouragement. I am glad to hear that in your teen years you were able to learn how to cope better. Lydia was so resistant to all of our suggestions at first, and we are at least seeing now that she is willing to do things like listen to music while we eat with headphones on. I truly am grateful for the positive thoughts.

  6. Hi. I am a mother but I am the one with Misophonia. And I do not only have Misophonia, I am also Autistic. I have a son who is Autistic. My husband is most assuredly on the spectrum as well but has never taken the time to get a diagnosis. I have never wanted to feel like a burden or pain for my family. I hear your pain coming through in your writing. I hear the worries and the fear and the concern and the feeling of rejection and how it pains you to see your other daughter going through this same thing as Misophonia in your other daughter focuses itself on the two of you. I understand that. I’ve seen this hurt my Mother too because I cannot handle her voice. I also cannot handle eating sounds, but not only that, I have super sonic hearing due to being Autistic. The pain I feel from my auditory sensitivities is something I can rarely describe accurately to those not on the spectrum.

    I realize these things are horribly difficult for those around me to deal with. I understand that. I know it can feel like a rejection not only of the stimuli that causes these issues in me but of the person they are generating from. The thing is, it is never a rejection. I know you know that. I know you know that because you know how much your daughter loves you and loves her sister. You see it. It is horribly painful for me to think of making others hurt or uncomfortable around me. To feel rejected by me. Especially since I have trouble with my own son’s voice. The one person I hoped and prayed I would never have a problem with. But it came on after he went through puberty and his voice changed.

    We have had to do a lot of things around here to make it better. Texting on days I’m super highly sensitive and can’t handle voices. Using earbuds at the table so I can eat with my family, and that does not always work. Eating crunchy foods while others are eating their meal so I can handle sitting at the table with them, but mostly I do not do this. If we watch TV and eat at the same time a lot of times I do not experience the overload from the sounds. I cannot handle many, many, many, many sounds due to either the Misophonia, the Autism, or both. But there are always ways to make the environment more friendly for myself and for others. It sometimes takes a great deal of work to make it so and to figure it out. It won’t work 100% of the time but it can go a long way to help. I’ve not read anything other than this post on your blog so I’m not sure what you and your family have discovered works for yourselves. I’m sure you all work on it a lot. Being a family who lives with someone with Misophonia, it is next to impossible to not do something to ease the environment. Though I have talked with others on the spectrum or with Misophonia whose families are non-supportive and even cruel to them. This saddens me greatly. I do not get that from you in this post. I get that you are incredibly passionate and caring and desire the best for your family and would do what you needed to do to make it good for all of you. It sounds like your husband would be supportive too. Like perhaps he could break it down into smaller chunks as he did at dinner saying: “It is only dinner.” A lot of children are not lucky enough to grow up in a loving and caring family like you have.

    I do not feel overwhelmed or upset that my son is Autistic. I do not see that as something to be sad about. I know we as parents tend to see the challenges in our children’s lives and focus a lot on those because we are worried for their future. What if we were to focus more on what they can do instead of what they can’t do? My son holds the mirror of society up to himself and feels horrible because society tells him he’s supposed to be this that and the other thing by this age or that age. In reality, those of us who are differently abled do not have that same time frame nor many times can use that same ladder for success. Mostly, I do not want my son’s disabilities to feel like that makes him a burden because that is how he will learn to see himself. This is something we live with just as someone who cannot see learns to manage in the world without sight, or someone who cannot hear learns to manage without hearing. It’s all relative, isn’t it? Our disabilities and our abilities. Everyone has some kind of challenge and some more than others, some more disabled or more abled or a mixture that makes it difficult for them. Everyone. It’s how we work together to help each person feel loved and accepted and understood on both sides of the issue that can make a huge difference.

    I know this is terrifically long comment. I am quite passionate about this topic too as it effects my family as well. You’re not alone. There are others out there and you reaching out through your blog, I sure hope it helps you find the support and help you need as well as the compassion from others for those feelings of real pain that we can all feel from time to time. Many hugs and lots of blessings to you and your family. May you all find a beautiful way of living in a world where sound can be such a huge challenge to deal with.

    Brightest blessings, Bird

    • Thank you for your sharing your story with me. It is always so encouraging to hear from other people… I do understand misophonia.. I believe I have it as well, but much more mild than my daughter, so I can relate a bit to how she is feeling, and that helps me. It is sad when families that don’t understand it become berating and cruel with their misophonia sufferers. Your story is beautiful.

  7. I was deeply touched by your writing and I just want to remind you once again that you’re not alone!
    I’m a mom with Misophonia, and I’m terrified by realizing that my Miso is reacting on sounds my children produce! Awful thing, this Misophonia!
    I found out about Miso two months ago, I just though how awful am I as a person. I also needed to write and started a blog to serve me as a therapy and to spread awareness about this condition.
    Here’s my blog http://www.soundsofshutter.com I write honestly about my feelings and if you wish maybe we could kind of support each other… At least that we can do.
    I feel for you and I know for sure I’ll be checking how are you doing!

    I wish you all the strength needed for easier coping with Miso!

    • Thanks Maria… I am sorry to hear that your children are beginning to be a trigger for you. I know the stress this can cause… all we can do is support each other and try to find ways to cope and manage with the trigger sounds. I will be checking out your blog too. Thanks for the kindness…

  8. There was a 20/20 special on this if I’m remembering my shows correctly. I have it and have just always thought I was crazy. Of course, I also have a host of other “issues” so I may not be far off on the crazy diagnosis, either. There are others … Kelly Ripa has it, too. We’re all in this together. Music is my salvation, for sure.

    I’m so happy to have found your blog today … I have so much to say on so many posts. You are amazing. :-)

    • Thanks so much… you are right, they did feature a 20/20 on misophonia. I happened to see that show a few months before my daughter’s triggers became extreme and obvious, so we at least had a name for it and a starting point to research! Music saves us in our house too…

  9. This made me feel very sad. Your emotion is evident in every word. I have misophonia and already see signs of it in both of my boys (they are 9 & 7) – it is horrible for everyone concerned, not least the poor innocent bystanders. One thing I found incredibly hard to live with was the guilt – when I was being rational, I would go over and over in my mind about how horrible I had been to people. It has been easier since I was able to put a name to it, and realised it wasn’t just an evil side to my personality. You are doing a great job! It’s not easy living with misophonia, but it sounds as though you are balancing your family just right (even though it might not always seem like that).

    • Thanks for the encouragement. It is a constant struggle… we are doing our best, and hope it is enough. Im grateful for the support people have openly given us during our most difficult times.

  10. My heart breaks reading this. I was lucky, as a child, my misophonia was milder and I was able to cope with most triggers.

    The older I got, the worse it got and at times it can send me into a violent fit of rage which, as a severely disabled and fragile person, ends up doing serious harm to me. I have to completely withdraw from the situation and even once the trigger has gone, I’m on edge, reliving it in my mind…seething with anger, at both the trigger and my stupid brain for reacting so badly.

    The only thing I’ve ever found that can help is the use of tinnitus aids. Like hearing aids, only smaller, they play white noise at an adjustable level (for different situations) directly into your ears. It drowns out the triggering sounds without stopping you hearing conversations or the TV.

    I’m not sure how much it would cost you but seeing an audiologist and asking about the possibility of trying them before you buy might be worth it.

    Not only to help Lydia, but to make life easier on the whole family.

    I’m so sorry you’re all battling this sound-demon but you’re truly not alone *internet hugs*

    Good luck for the future.

    Kimberley

      • Oh wow! That’s brilliant news! You’re an amazing parent, I hope you know that!!!

        With regards to the tinnitus aids, as I’m sure you know, they’re very small and unnoticeable (especially if Lydia’s hair is long enough to hide them when she wears her hair loose!)

        I truly hope that they work for her and that she (and the rest of the family) can get some relief from the crushing weight of dealing with misophonia, especially during mealtimes. Eating together is a family bonding experience and I know how isolating it can feel to be forced to run away from something so vital.

        You’re an amazing parent for researching this, recognising that she truly cannot help her extreme reactions to unwanted sounds and doing everything you can to mitigate the effects on Lydia and the whole family.

        I can’t even begin to imagine how this must feel for you. You desperately want to make your daughter happy without sacrificing the happiness of the other members of the family. I promise, you’re doing really well though.

        I didn’t have such support until I met my husband. I literally have no contact with my family anymore (although it’s not down to my misophonia) but even before they disowned me, I felt very alone and disconnected from them by their lack of understanding.

        Thank you from the bottom of my heart for trying to understand and help Lydia (and the rest of your family) cope with this awful disorder, even though it clearly hurts you so badly.

        If you ever need to talk, I think you might have access to my email address as I gave it when I posted my comment. Feel free to contact me. Whether you want to talk, or Lydia does, I’ll do my best to help either of you.

        I myself am almost completely deaf (which just makes it all the more ironic that the very few sounds I *can* hear make me want to scream). Having worn actual hearing aids in the past, I will warn you that it may take a while for Lydia to adjust to wearing the tinnitus aids.

        If she’s uncomfortable with them at the start, please encourage her not to give up. Think of it like a new piece of jewellery. When you first start to wear a new ring you’re constantly aware of the sensation of it against your finger. Every movement feels odd. If you wear it all the time though and don’t give up then within a week or so it almost becomes a part of you. You forget it’s there and when you take it off, it feels strange *without* it!

        The same applies to hearing/tinnitus aids. She will not only get used to them, she may even feel strange without them!

        I’ll be thinking of you all come Friday and wishing for the best possible outcome!

        I’ve bookmarked your blog so if you post an update, I’ll be sure to check in and see how it’s going!

        Best of luck to you all!

        Sending you all even more hugs and lots of love!

        Kimberley.

  11. My daughter started having sound sensitivities several years ago, she is now 15.we sought help from everywhere we could think of. We where lucky enough to live in the Boston area and get to see someone who had helped kids with this. I am so proud of how far my daughter has come!!!! She is truly courageous!

  12. i feel you. We have the same situation but until now i have’nt tries to find my daughter’s solution to cope her ill thats why i keep on searching, looking for somebody coz even doctors dont know about miso.

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