#misophoniamatters

Kaitlyn’s Misophonia and Marriage Story Printed with permission, this story will be part of the upcoming book "The Misophonia Marriage Handbook" Luckily my husband has always been supportive of my misophonia. Even before we were married, he was an incredibly supportive, kind, and generous man. This does not mean he has always liked dealing with my misophonia, or that it hasn’t been hard to deal with—but, he has tried his best, nonetheless. There have been endless couple’s negotiations through our 5+ years together. Many of them have included sleeping separately, not going to high-trigger places, and having shut doors when there will be triggers present. These are all things that seem simple on one hand yet impact our daily lives. Luckily chewing isn’t a main trigger—but we’ve relied on softer foods during some shows to cut the tension. My problem with misophonia does not come from my husband at all, but from his mother and father who are painfully ignorant to the pain misophonia causes. According to his family I am selfish and keeping him away from them, yet they don’t invite us to events because my misophonia is “inconvenient”. I have tried over the years to share resources, to be very polite and kind asking for accommodations – and yet the end result has been the same, “this cranky mean witch has stolen our son away”. It has been incredibly painful to realize that no matter how hard I try this condition will never be recognized by some people. They are not the first family members who have treated me this way, but the others were on my own side and I was fine cutting them off. The blessing here is that my husband does not care what they think and happily supports me through all of it, yet I am so sad that this important relationship in my life has been disintegrated because I am unable to attend social events in the way that people are “supposed to”. Sometimes I wonder if the misophonia is the problem at all – or if nobody would be good enough for her baby boy! I hope this reminder serves to highlight that romantic relationships can have for more complex outreaches than simply between your partner and you! Want to be part of the project? If you would like to submit an interview you can do so here: https://www.misophoniainternational.com/submissions-wanted-interview-for-upcoming-book-on-misophonia-and-marriage/ If you would like to submit a free-hand story you can do so here: https://www.misophoniainternational.com/misophonia-relationship-marriage-divorce-stories-for-book/   [Read More]

Misophonia is definitely not OCD. I say that, because I have both Misophonia and OCD, and yet some researchers are still conflating the two. I'm not entirely sure why researchers are so keen on misophonia being related with OCD. I'm not even sure why an OCD researcher would keep claiming this when the current science says misophonia has a motor basis. It's really dangerous when researchers can keep getting published with their ideas, despite it being based on case-studies or studies that ignore the fact people with misophonia can't stand exposure therapy. In-fact, my OCD and misophonia are so completely different (albeit they do both cause torture).By the way, I work as an advocate for both Misophonia and OCD and am an active moderator of R/Misophonia and R/OCD on reddit. I just want to point out from a purely emotional standpoint, that OCD and Misophonia are both misunderstood enough. We already struggle trying to get awareness, understanding, and empathy from the greater public. By conflating the two, it does a disservice to both disorders, and all of us who suffer with one or both of these disorders. I'm concerned not just for misophonia sufferers, but because OCD sufferers also deserve researchers who are ethical and not clinging to ideas that seem to make absolutely no sense from a scientific standpoint. While OCD and Misophonia might be co-morbid, it is even painfully easy to see that they are different when living with the two disorders. Now, I want to give you a laymen run-through of the differences between my OCD and my misophonia. While I am by no means an expert, I do have both, and I do advocate for both. For example: OCD Thought: Does my neighbor hate me? I smiled at her and she looked away. I bet she hates me. Misophonia Thought: My neighbor mowed her lawn last week. Will she do it again? Will I be triggered? Of course, this isn't an exact science. Sometimes my OCD can take charge and ruminate over things related to misophonia, but they're still not the same thing. OCD is a thought disorder. I panic because I can't handle my thoughts. Aside from the misophonia, I really don't have a thought relationship with lawnmowers, whistling, chewing, tapping. In-fact, before I had misophonia I almost never thought about this! OCD plays on real (or imagined) fears. Misophonia, on the other hand, has to do with triggers that exist in the world. It has nothing to do with my thoughts. A trigger shows up, and somewhere deep in my non-cognitive brain, a threat is identified. The sound can be so low I barely hear it, and then whack there goes my fight flight. My palms sweat. My heart rate increases. I am in fight flight before I ever know what I'm thinking about. In OCD, the struggle comes from the thoughts I can't get rid of. For example, my OCD loves to cling to whether or not my pets will die, whether family will die, or if my boyfriend will someday up and leave me. While people with misophonia do have cognitive fears, they are not the cause of the distress. When I am upset by OCD, the thought repeats over and over in my mind. I will seek reassurance such as googling, "signs your boyfriend no longer loves you", in the case of OCD, this makes things worse. Reassurance becomes a compulsion. In the case of misophonia, reassurance won't do that, because the actual sound or visual is the trigger, and once that stops, you will calm down and go back to homeostasis. A good way to test this is by wearing a smart watch or fitness watch and noticing that the misophonic reaction goes down once out of the environment. OCD can feel like a reel that keeps repeating. I'll leave you with an excerpt from the Misophonia Literature Review: In a recent replication and extension of Wu et al. (2014), Zhou et al. (2017) used the MQ to explore the relationship between misophonia and psychopathology in a sample of Chinese college students. Consistent with Wu et al. (2014), 17% of the sample (N = 415) reported misophonia symptoms caused clinically significant impairment in their daily lives. Higher MQ scores were significantly positively correlated with symptoms of anxiety, depression, and OCD. This suggests misophonia is not uniquely associated with anxiety, depression, or OCD per se, but may instead be more generally correlated with higher levels of psychological distress. [Read More]

I reached out to Alvantor because I was really curious about how their bed tents would be for a sensory space. As Dr. Brout recommends in her Regulate, Reason, Reassure guides to misophonia, a space in your house with sensory toys or soothing materials can be helpful for misophonia, so I decided to try this! I received the tent for free, but that does not color my opinions of the product, as nothing was promised other than a tent in exchange for a fair and truthful review. I have set it up in the basement because there's nowhere else in my house with room. Luckily, I have an extra bed so I set it up there. The set up was very simple and straight-forward. I was worried because I HATE putting tents together, but all I had to do was insert 3 poles, and the rest of the tent just "popped up" ready to go. I can also say that the tent is VERY STURDY because my cat is constantly jumping on the top of it, and there's been no tears as of yet. I haven't gotten all of my sensory tools in here, but I've been loading it up with pretty colored lights, play dough, coloring tools, fluffy pillows, and crafts, and I've been very happy with the size and space inside the tent so far. I've also gone into the tent when feeling overwhelmed, and I must say that it was nice to escape from the world for a time. The feeling of privacy and safety really does work with these tents, and is a great way to have a separation from the busy world. I am going to put bright sheets and blankets in the tent so that it feels like a very soothing environment. As you can see, my cat agrees that this tent is a really nice sensory space. The only real "draw back" is that they're pricy and have import fees if you're not in the USA, but they're still a great value, and I haven't found anything like it. The smaller twin versions of these tents would be awesome for parents trying to build a sensory space for their kids in small homes. They also come in pink! I recommend this product, and I'm really excited to spend more time in my tent. [Read More]

As scientists run around telling the world that the "treatment" for misophonia is Cognitive Behavioural Therapy, I think it is important to note that any findings on CBT that have been seen are akin to that of a coping skill -- they help deal with the emotional after-effects of misophonia, not the misophonic moment, and certainly not as a preventative measure. You cannot CBT the misophonia away, and you surely should not be out there referring to CBT as a 'treatment' for misophonia. This is a disingenuous move by researchers, clinicians, and those involved in the use of CBT to skew public perception on CBT. I am not saying that CBT is not helpful for misophonia. Like all coping skills approaches there is room for CBT in the room when we are trying to help people with misophonia mitigate the after-effects of the disorder and learn how to live in a world that is not accommodating to their sensory needs. Yet, this does not mean that CBT is the be all and end all, and it absolutely does not mean that we should be toting things like exposure therapy (if exposure worked we'd all be cured, none of us can completely ignore stimuli). Misophonia is also not a behavioural disorder. We do not learn to hate sounds and we cannot learn not to. In fact, saying that misophonia is "hatred of sounds" in general is untrue because there is already proof that there is a brain basis and the amygdala and fight-flight are involved (Kumar, 2018). I understand that scientists are using the language they are used to, but they should be cautious when explaining any cognitive based, or even sensory-based skill for misophonia as a "TREATMENT". The very word treatment assumes that misophonia can be mitigated by the skills learned, and that is simply not true. CBT is helpful to take the edge off and learn how to understand misophonia through worksheets and psychoeducation, but that does not mean that it should be referred to as a treatment. In-fact, I'd wager that calling anything a treatment at this point in time is nothing more than wishful thinking. Much of the problem, I assume, is the reliance on "treatments" in American medicine and 'psychiatric care'. The use of insurance codes means that specific interventions must be referred to as a treatment to be approved for use and reimbursement. Frankly, this entire practice is backwards and wrong, and is why in places like Canada where I live this is unheard of and only muddies the waters when it comes to the expectations of those receiving these "treatments". Instead, practitioners and researchers should be honest and explain CBT for what it is, a coping skill for the disorder, and not the be all and end all approach to helping sufferers. References Brout, J. J., Edelstein, M., Erfanian, M., Mannino, M., Miller, L. J., Rouw, R., Kumar, S., & Rosenthal, M. Z. (2018). Investigating misophonia: A review of the empirical literature, clinical implications, and a research agenda. Frontiers in Neuroscience, 12, https://doi.org/10.3389/fnins.2018.00036 Kumar, S., Tansley-Hancock, O., Sedley, W., Winston, J. S., Callaghan, M. F., Allen, M., Cope, T. E., Gander, P. E., Bamiou, D., & Griffiths, T. D. (2017). The brain basis for misophonia. Current Biology, 27(4), 527–533.   Misophonia Coping Skills Class with Shaylynn Hayes-Raymond Misophonia Matters is an advocacy-based coping skills class, book, and workbook for adults, teens, and clinicians by long-time advocate Shaylynn Hayes-Raymond. Shaylynn has been advocating for misophonia since 2015 and moved to a career in counselling based on her experiences as a misophonia advocate and sufferer of the disorder. The Misophonia Matters approach includes advocacy, psychoeducation, sensory-based skills, and cognitive and psychological skills. Worksheets are presented throughout the program. Central to Misophonia Matters is the idea that while we cannot treat and prevent misophonia, we can learn to navigate and adapt to our world through accommodation, coping skills, and an empathetic advocacy-based approach. Take the class on demand. Or, find a live class. [Read More]

Today I had the opportunity to chat with an amazing person online. While scrolling through some Facebook posts I came across a teacher, “Josie” reaching out for some answers. One of her students, Jimmy appeared to be suffering from Misophonia. She witnessed his reactions of rage to repetitive noises in the classroom. The matter was discussed with the occupational therapist, who brushed her concerns aside blaming his outbursts on behavioral issues. Josie did not accept this explanation, she knew there was something more to his misery and she wanted to find out more about Misophonia and how she could help provide Jimmy with some relief. I read and re-read her post and thread of comments that followed in absolute admiration. This was not her child, but she recognized that there was some other issue, and was proactive in finding out more information. Throughout the day I thought more and more about everything that was posted. Josie showed so much compassion, spending her Saturday trying to learn more about Misophonia so she could help this young man. I see so many students struggling through their classes, desperate for some kind of relief. They are either afraid to ask for help, or even worse afraid of the outcome. When you suffer from Misophonia, no one can tell, so it must not be real? It must be something they are making up. WRONG! The struggle is real, and it is absolute torment. If Jimmy is lashing out in the classroom I can only imagine the intensity of the rage inside this young man. Maybe he doesn’t know how to explain what he is feeling. You cannot blame him for that, he is a child. Even as an adult I was not able to explain how I was feeling and the explanations do not make sense. Most of us have grown up thinking that we are monsters. We have this anger and rage “for no reason.” Makes sense, right? I mean why would someone get so enraged because your friend is crunching on a carrot? With Misophonia, our brain interprets sounds differently, sending a signal that results in a “fight or flight” response. We cannot ignore the sounds. In fact, our ears seem to turn into a microscope, zooming into the triggering sound, tuning out everything else. Often that sound will continue to echo in our heads long after it has stopped. Without knowing about Misophonia, Josie tried to teach Jimmy to remove himself from certain situations. One day a stack of Jenga blocks fell (one of his known triggers) collapsed and he immediately left the room. Josie understood. She did not reprimand him, she did not shun him. In fact, she was so proud of Jimmy. It is the little things that count and mean the most. The key to living with Misophonia is to recognize and know your trigger sounds, making it easier to be prepared. If Jimmy sees some other students playing Jenga, he can go play at the opposite end of the room. When music time comes, and the other students will be singing and humming, Jimmy can be excused from the activity and take a book to the library. Now that Josie knows Jimmy suffers from Misophonia, she will be able to be more understanding to Jimmy’s needs. I have no doubt in my mind that she will continue to advocate for him. I have never met Josie, I do not know anything about her. But I do know that she is my hero. When I approached her to ask if I could write this article about her story, she was honored. Josie thought she was doing what any other teacher would do, try to “assist a suffering child.” I think we all know that is not the case. I am a “Jimmy.” Josie, there are no words to describe your compassion and determination for going above and beyond. On behalf of all of the other Jimmy’s in the world… thank you from the bottom of our hearts. You are truly an inspiration. In a world full of people who do not know, who do not understand or who dismiss our pain and suffering… be a Josie. [Read More]

I know that when you look at me, you see something other than who I really am. I am not a raging psychopath. I am not a total bitch. I am not a maniacal lunatic. Who am I, really? I am someone who suffers from Misophonia, a rarely known and seriously misunderstood disorder. My brain processes sounds differently than a normal brain. I am not even talking about bad sounds. I am referring to normal, every day sounds like sniffling, tapping, and even breathing. I am also triggered by visual images, tapping, leg shaking, or even mouth movement. Yes, it sounds completely insane, because it really does not make any sense. People judge it as human nature. I am guilty of this as well. If I took one look at you smacking a wad of gum I'd think that you were a complete slob. I have watched someone in total disgust as they shoved her hand deep into an ear shattering, crinkling bag of chips, then thrust a handful in their mouth. I have wanted to scream at the top of my lungs, “WHY ARE YOU SUCH A PIG?” If I had the opportunity to get to know you when you were not chewing, I'm sure I'd think you to be a very nice person. We might even be friends, but I just cannot look past the visions or the sounds of your chewing. No matter how caring and compassionate you may be, I cannot get past my feeling of disgust. So, chances are, I will miss out on the opportunity to find out because I cannot get past that initial impression. It does not make sense. Misophonia is a condition where your sense of hearing really makes no sense. You might hear a sound that you find annoying, you may huff and then just go on with your day. No big deal. For someone who suffers from Misophonia, that is not possible; it IS a big deal. We are not simply annoyed by sounds, we are tormented by them. A sound as simple as clicking your pen open to sign a document can send us into a raging fury. My brain does not allow me to ignore it or move past it. Instead, my brain tends to zoom into that click. That one single click. It becomes louder, more intense, and I am overwhelmed with feelings of hate and rage. I want to hurt someone. I want to hurt you, and I want to hurt myself. I feel the blood rising to my face. My body overflowing with hatred. I have to resist these feelings. Sometimes, I am successful, I can hold my rage in but it eats away at me festering inside. Other times, I may just explode. I may blurt something out loud; a rude comment, a curse word. I may throw things. I have no control over these words or actions. They are simply a reflex reaction to what I feel, and I just react without thought. Many times, I use myself as a human stress ball. I grab my arms or legs and dig my nails deep into my skin, drawing blood...anything to divert my attention from that torturous sound. It doesn’t work, but I need an avenue to try to release some of these feelings and emotions and to try to divert my attention from the trigger sound(s). Most people will not understand, many will mock even if you try to explain. Not that long ago I went into a retail store to pick up an item. I usually avoid shopping in person, but thought it would be a quick errand. There was a construction worker just standing in the aisle snapping his tape measure incessantly. I shoved my earplugs in but it was too late. As I walked past him, I asked him politely if he could please stop making that noise. I explained that I have a medical condition and it was very disturbing. He looked at me with absolute spite snapping it again and asked me, “This noise?” Yes, that noise, is it really necessary? As I walked away, I overheard him saying, “Oh that's just some lady bitching about me.” I completely lost it, and immediately went into a meltdown. I grabbed the item I was there for and headed to the checkout. I am positive that people must have been wondering what a full grown woman was sobbing about. A few women in line were sympathetic and offered to let me go to the head of the line. As I was explaining the situation to the manager, my fellow shoppers watched in complete disbelief at his contemptable behavior that he continued to flaunt. The entire time I was in the store this man stood pompously, watching me, grinning as he continued to snap his tape measure. He seemed to find my meltdown gratifying. I was beyond livid at this man and I called security on him. I had to sit in my car for at least 45 minutes before I gained my composure enough to drive home. Would I call security on someone for popping gum? No, of course not, but I felt as if this man was not only tormenting and bullying me, but actually assaulting me. Afterwards, I second guessed my reaction, and I even discussed this experience with my therapist and was assured that I did the right thing. Now, in a non-agitated state of mind, I feel justified in that action. It brought me closure. Hopefully, he learned a lesson in human compassion. If you see someone that looks distressed or seems to be "freaking out" over something simple, do not be so quick to judge. Chances are, there's a reason behind their madness. Just because you cannot physically see a condition does not mean it is not real. I do not normally act this way, I do not want to act this way. I do everything in my power to fight these feelings, but I know that I will not win. Until there is a cure, I will just have to continue to live my life by avoidance as best as I can. If you see me having a meltdown, remember that I suffer from Misophonia and the way it affects me makes no sense. [Read More]

Is misophonia simply an auditory disorder? The answer is no. New research reveals that it is also a motor disorder involving mirror neurons. [Read More]

Wondering what is happening with misophonia research? Progress is happening. [Read More]