#misophoniamatters

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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]

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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]

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

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For those of us who have misophonia and have dedicated much of our lives to advocacy, it has been a long and hard journey both professional and emotionally as we embark on this newly growing disorder. Over the past 10 years I have had the immeasurable honor of meeting so many respected researchers, clinicians, and scientists who are dedicated to ensuring that misophonia is not ignored and is researched. This warms my heart on so many levels. Although I just turned 30, I remember the ambitious 20-year-old girl who wanted to cure the disorder. I was so scared that misophonia was going to take up all my life and ruin what little chance I had at happiness. Of course, it wasn’t easy—but I was able to keep going and learn how to grow and live in this misophonic world. I even got a husband! With that said, much of this is why I attended a masters program in counselling psychology, and even more, why I wrote a book on coping with Misophonia called Misophonia Matters. Misophonia has been the fabric of my DNA from the first time I heard somebody whistle and the pain was so intense I felt weird, sad, and angry. I think it’s important to point out that over the years there have become certain factions of advocates for misophonia. Getting along has not always been a priority, and while I do not think any of this is due to nefarious reasons, I believe we are all so hung up in our own misophonia and the absolute hell we endure, and sometimes we get caught up in our ideas and ideals on misophonia just the same. I think, though, that if us advocate, researchers, and clinicians worked together we could work for real change on misophonia. Misophonia—for those of us that live it is more than a behavioural problem or emotional intolerance—it rocks the very foundation of our lives causing severe neurophysiological pain. With that said, even if you believe misophonia is purely emotional or behavioural, that pain and what to do with it still remains. I have fought, argued, and felt like I was at war with members of the misophonia advocacy and research community for over ten years. While I do admit some of this is my fault—I do believe others have had their own parts to play in disjointed advocacy and a race to own the disorder in the eyes of history. It is my proposal that instead of being against one another, we form “The Misophonia Alliance”. This would merely be a group of advocates, researchers, and clinicians sharing resources and pooling together our audiences to ensure that all of our information is getting to the world. I also offer the use of The International Misophonia Research Journal to all other advocates and nonprofits and of course researchers as a beacon of hope for the future—we look forward to having your work presented. We are not at war with one another. Whether one of our books sells or the next, that is unimportant. What matters is that we are constantly striving to learn more and help those of us who suffer from the condition—the way we cope is less important than a legion banded together to tell the world that enough is enough. There are too many sounds, too many lights, and too much stimuli! I invite ALL OWNERS OF MISOPHONIA WEBSITES, BLOGS, NON-PROFITS, and RESEARCH CENTERS to become members of The Misophonia Alliance. We will put a page live with links to all resources, and hope that each member does the same. Research helps us all. Awareness helps us all. Coping with misophonia is not a monopoly, it is a miracle! If you would like to join this initiative—even if you weren’t on the best terms with me in the past, I invite you to, and actually hope and plead that you will. The alliance will have the following goals: Meeting together to discuss what each part of their community is most interested in Sharing resources if possible Have multi-website run polls to conduct polls that show the community's feelings regardless of where they interact from Provide a space where individual groups and interests can come together to convene If you are interested in this project, you can add your website, research program, or business to the alliance now: https://misophoniafoundation.com/the-misophonia-advocacy-research-and-clinical-alliance/ [Read More]

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This project is not yet titled, but is an anthology of stories from sufferers of misophonia. The aim of this project is to present numerous perspectives on misophonia from the people who matter most: those who have misophonia. This project is edited by Shaylynn Hayes, editor-in-chief of misophonia. Submissions may be featured online on Misophonia International, as well as in print and through an ebook. Guidelines: Submissions should be between 1000 to 3000 words, and must be non-fiction and tell your own story. By submitting, you consent to Misophonia International publishing your work. Please do not make submissions that involve illegal content (violence, excessive drug use etc.) All submissions are subject to editing for grammar, spelling, and style All accepted applicants will receive one copy of the published anthology upon printing. DEADLINE: MAY 30th, 2023 [Read More]

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Misophonia is not a social issue. Misophonia is a brain based disorder that has been verified to exist by esteemed researchers. There is a growing trend of therapists and other "influencers" on social media sites asking their audiences if misophonia is "real". I'm tired of this kind of behaviour. Could you imagine if these same people asked, "is Autism real?" or "is depression real?". I can't. I have made my own poll in response: Now, I can't fault these people for not knowing whether or not misophonia exists, it's a newer disorder and it is not yet in the DSM-5. Fine. That's completely true. And yet, a quick search of PubMed would have given them numerous articles that show evidence that the condition is very real and incredibly hard for persons with misophonia to live with. At times, I feel like a circus sideshow that's here for the "mildly interesting" crowds who like to poke at weird conditions. Oh, you experience excruciating pain and fight-flight from chewing, whistling, snoring? How hilarious! The abstract for the Consensus Definition is below: "Misophonia is a disorder of decreased tolerance to specific sounds or their associated stimuli that has been characterized using different language and methodologies. The absence of a common understanding or foundational definition of misophonia hinders progress in research to understand the disorder and develop effective treatments for individuals suffering from misophonia. From June 2020 through January 2021, the authors conducted a study to determine whether a committee of experts with diverse expertise related to misophonia could develop a consensus definition of misophonia. An expert committee used a modified Delphi method to evaluate candidate definitional statements that were identified through a systematic review of the published literature. Over four rounds of iterative voting, revision, and exclusion, the committee made decisions to include, exclude, or revise these statements in the definition based on the currently available scientific and clinical evidence. A definitional statement was included in the final definition only after reaching consensus at 80% or more of the committee agreeing with its premise and phrasing. The results of this rigorous consensus-building process were compiled into a final definition of misophonia that is presented here. This definition will serve as an important step to bring cohesion to the growing field of researchers and clinicians who seek to better understand and support individuals experiencing misophonia." I'm not sure what these social media personas hope to gain by asking if misophonia is real? Engagement on a tweet at the sake of mocking the pain of people they are too lazy to even do a google search to understand? This reminds me of the time that Kathie Lee and Hoda mocked misophonia and called it "misophoney" while making trigger sounds and laughing. People with misophonia are experiencing a fight-flight-freeze reaction which then manifests as pain, anger, depression, and impacts quality of life. Can you imagine when your parents, husband, and even kids are causing you distress and pain? Imagine not being able to attend family dinners? Movie theatres? Feeling intense pain in classrooms and having to drop out of school? These are all common things persons with misophonia report. We're not your punchline. Please learn more about our disorder, and come to this from an educational perspective. This is not a social cause, this is a medical one. We are real people and we come from many walks of life. Before you tweet, please consider the audience- what are you going to gain from this tweet? Who will you hurt? [Read More]

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While the research may not be caught up enough to say definitively that Misophonia causes depression, I believe for many of us, depression has become a part of our lives. Isolation, sadness, and loss of interest in activities all go hand in hand with misophonia. It can be a hard disorder to live with, and some of us take out of this a very bleak meaning. I do think that there is hope. Coping skills and research can offer viable remedies for misophonia, but we should also consider out mental health. If you believe that misophonia has caused depression (or heightened feelings of depression you already had) you should talk to a psychiatrist or psychologist. Even though counsellors cannot fix misophonia, these professionals are trained to help you manage your depression and help you live a fulfilling life. I first started battling depression before I had even heard of the word misophonia. I have been fighting that fight for 14 years, and I've learned a few things along the way. I've learned that there is a degree of grief and loss that comes with depression. You must accept the depression, and learn to move on from it. A huge part of this process is asking for help and allowing professionals and those that love you to be welcome in your life. This can be a hard step but it's important. Misophonia may not be the complete cause of depression, but it can certainly contribute to the illness. The following is advice that I wish somebody had told me when I first learned I had depression at 12 years old. It's absolutely okay to not be okay. You can get through this. Even though today is horrible - that doesn't mean tomorrow will be too. People want to help you. Be honest. Being depressed doesn't make you weird. It makes you human. If somebody doesn't believe you're depressed - that's their problem. Your feelings are legitimate. There's no magic pill - but that doesn't mean you shouldn't try and help yourself. Some days are better than others. There's nothing wrong with staying in bed. There's nothing shameful in crying. Try to do something you love every day - even if you're not interested anymore. You'll be surprised when the good moments "peer through the curtain". Go outside. Even if you have to wear headphones. Breathe in fresh air. Take care of yourself. Take a shower. Eat. If you are clinically depressed, or suicidal, please call a hotline or immediately tell a relative. Your life is important. You matter.   [Read More]

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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]

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I first struggled with depression at age 12. For the most part, I had recovered from depression when I discovered I had misophonia in 2013. I had good days, and I had bad, but my life was starting to get back on track. My life was finally starting to come together, and in my Thought Catalog article I explained that this was like crawling out of one hole to trip into another. As you can imagine, misophonia triggers my depression. Even as I have become secure in other aspects of my life, and finally carved my own path - misophonia still leads to some of my darker moments. Misophonia is hard. Realizing that some of your social relationships are fractured, and may never fully-recover, because of the bitter pill that is misophonia, is really hard. Living day to day in fear of triggers, feeling trapped and isolated, is really flipping hard. Hell, even complaining about the disorder becomes hard because you worry if you'll ever be more than your triggers. Looking toward the future - to trips you'll never take because there's no way you'd be able to manage on a plane, looking through travel brochures at all of the plans and goals you used to have - yep, that's hard too. Leaving a job that you loved because somebody whistles or clicks their pen - not easy either. Then, you'll have to explain this to friends and family while they look on - either disinterested, or simply able to help. Yep - it's all really flipping hard. I'm sick of complaining about misophonia - and I'm sick of thinking about all of the things that I've lost. And yet, the depression still creeps in. The sadness that accompanies my grief at a life I might never have, or at the very least, the life that make more time to get. I have faith that the Memory Reconsolidation Study will render treatment - but until then - what? But, I don't want this to be a rant. I want to stand up and I want to take charge and help others feel better. I want to live my life, or whatever remains of one. So, here are my tips for struggling with misophonia depression. 1. Accept that things are different, but don't give up. Yes, misophonia is hard. Yes, there are days that are harder than others. You might never go to the movies with friends. You might have to give up restaurants. But, there are things you can do. Find activities that you can enjoy where your triggers aren't. Take bite-sized pieces. If you were in a wheelchair, you'd simply attend venues that are wheelchair friendly. 2. Accept help for depression. There may not be a cure for misophonia - but the sense of loss, hopelessness, anxiety and depression that go along with it are treatable. Try to separate the two and treat the symptoms of depression. In doing so, you might become more equip for handling with triggers, and then the depression that follows. It's not a blanket-cure, but you might be able to find good in the moments where no triggers are present. 3. Try to keep doing the things you love. Giving up the things I loved has increased my depression. The more time I spend canoeing, painting, watching TV, or gaming. The better I feel. You should also try to socialize when you can. Do remember that research is happening. We're not alone. Even if it feels that way. It's going to be okay. [Read More]

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From what I have learned, not many people know what Misophonia is. If they do, their response is "Oh, isn't that a fancy name for pet peeve?". This might be the most aggravating thing to experience when explaining a challenging disorder. We need to ensure that people realize that a pet peeve won't trigger you. When it is merely an annoyance you will not consider punching a wall. A pet peeve won't upset you so much you fall down shaking in panic and start crying. A pet peeve won't bother you so much that it makes your heart beat so fast and you feel like the sound is going to suffocate you. A pet peeve does not make you feel like there is no way out. A pet peeve won't trigger the response of me falling apart either mentally or physically. After my trigger sounds. sometimes I don't even feel like myself. I feel like I'm looking at someone else, someone else that I don't want to be. Then, I remember, that it is me. It gets hard sometimes to see myself without the flashing words of "you're not a whole person, you have a disorder". There's times, admittedly, a lot more than I am willing to accept, where I listen to that flashing sign. There's other times where I know I am more than this disorder and I am a whole person, disorder be damned. Accepting that you have something wrong with you and that its out of your control is sometimes the toughest pill to swallow. At least, it has been for me. For my whole life I never knew why simple everyday sounds bothered and upset me so much. I couldn't fathom why sounds of bare feet on the ground and people whispering and floors creaking and so many other sounds ruined me from the outside in. For some time I thought it was normal and that everyone felt that way. Suddenly, I realized that it wasn't a normal reaction. What was happening to me isn't normal. I then thought that I was alone in what I was feeling, no one could understand me and what I was going through. One night, after a breakdown, I went searching online for answers and I stumbled on Misophonia. As I continued my search I realized that all these symptoms matched with mine, that I could so easily relate to all the stories of other sufferers. I realized I wasn't alone, that there are people out there that understand me and I'm going through, and it brought so much joy to me. But then it hit me, there's no cure for this, this is what I have to deal with for the rest of my life. This isn't going away. I was listening to a press conference on misophonia and this woman, I think her name was Steph, was explaining her story, and how when she found out she had misophonia she said, "when I found out what i had, it was great. But I also knew what I had and I had to live with the realization that it would never get better."  This spoke to me. Misophonia isn't easy to live with, hell, I wouldn't wish this on anyone, but that doesn't mean it's impossible. Misophonia is livable, if that makes any sense. You can't let the misophonia run your life, you have to see yourself outside of this disorder and make something useful out of it. Maybe it will inspire you to help others with disorders or to help others in general, no matter what you make out of it, make sure you get the best out of it. You should have a mantra, "I am more than my misophonia" repeat in the mirror. On the way to school or work, tattoo it on you if you please. Just remember: you are more than this, you are more than anything that tries to limit you. If you believe in a God, believe that whatever God you believe in, must have some plan for you, and if you don't, like me, know that, this is out of your hands and not your fault. Don't blame yourself for having misophonia, accept that it's something you developed and live your life. Why? Because it's all you can do. Guest Submission [Read More]

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When we think of teenagers we often focus on hormonal, physiological and emotional changes. However, we often neglect to focus on how cognitive abilities, or thinking, changes. By adolescence, individuals are typically able to utilize abstract reasoning. However, this doesn’t happen for all teens at the same time. During the “tween” years, individuals begin to make logical predictions about the future (“what if?” questions). Then, as they grow into the later teen years, individuals move into hypothetical and deductive reasoning, which enables them to be able to plan and organize with more efficiency. However, there is a lot of variability in this stage and the parts of the brain that mediate these functions are not fully developed until age 23. In addition, physical growth, hormonal changes, and emotional development overlap. However, they do not necessarily move forward in sync with one another. The disparity between the physical, emotional and cognitive development can be confusing for many adolescents. However, this can be even more difficult for those with misophonia. Therefore, it helps to base your expectations of your teenager according to these differing developmental processes. For example, despite the development of more sophisticated reasoning, self-regulation (independently calming one’s body and mind) is often an area of difficulty for teens. This is why we often refer to our teenagers as “moody” and “unpredictable”. However, the ability to self-regulate is significantly compromised in misophonia, making the teenage years possibly more “stormy”. In addition, as socialization becomes more important, your adolescent is likely to face conflict between wanting to be with friends and wanting to avoid triggers. Finally,  your adolescent may fearstigma associated with misophonia. So, what can you do to help your teenager cope with these issues? It may seem very challenging. However, you can help your teenager learn how to mediate relationships with friends within the context of misophonia. Here are some ideas: Reassure your teen that not all social events must be attended. It’s okay to skip ones that might be particularly uncomfortable, or to stay home and rest if a break is needed. In addition, you can help by suggesting alternative activities for your teenager (especially ones that are regulating, such as exercise, yoga, sports, dance, etc.). The more rested and regulated your teenager is, the easier it will be to cope with triggers. Help your adolescent understand that missing a particular event today will likely make tomorrow a better day. Finally, as many of us know, family conflict often arises from the stressors of the adolescent years. Teenagers usually experience conflicts related to separating from family/parents as they move toward their peers. This conflict can be exacerbated for teenagers with misophonia, since they may be more reliant on their parents’ help. For many parents, it is difficult to parse out “typical teenage behavior” and behavior related to misophonia. Here are some tips that may help: Ask your teenager as calmly as you can about any behavior with which you are concerned This will encourage self-awareness. Try to make this a discussion to help figure these issues out, rather than making assumptions and engaging in conflict. Seek a mental health provider who can help if you and your family if you feel that you are faced with problems that seem insurmountable. Although the number of doctors and mental health clinicians is smaller than we would like, many are willing to learn about misophonia. Ask your doctor or therapist to consult with another professional who understands misophonia, and/or give them reliable information (provided at the end). Suggest to your counselor or therapist to take a course on misophonia. All clinicians are required to take continuing education credits and many are happy to take an online misophonia course. A link for a course is provided below. Adolescence is difficult for the individual, and it is equally as daunting for parents. Misophonia can certainly make this already “stormy” time worse for everyone. However, helping your teenager make some adjustments within daily routines and in regard to social events can go a long way. Demonstrating understanding and patience when your adolescent is behaving in ways that concern you is not necessarily "indulgent". Teens with misophonia often need their parents' guidance and support for a bit longer than others. For a comprehensive literature review to give your doctor: https://www.misophoniainternational.com/academic-article-misophonia-research/(link is external) If your doctor or therapist would like a course on misophonia https://www.sensationandemotionnetwork.com/ceus-for-clinicians.html [Read More]

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A few years ago, I posted on Facebook that I had misophonia. I was extremely nervous because most of the people in one Facebook group, the Misophonia Support Group, had negative experiences. I explained it as best I could, and the people who saw that post and commented have been nothing but supportive, which is amazing. My best friend, Elizabeth, of like 10 years (maybe more, we've lost count!) has also been supportive, in more ways than she thinks. She is the one on the left in the picture. I want to highlight one instance in which she helped me immensely while we were hanging out at her house. Now studying in New York, she came down to visit, and during one of the times we were hanging out, we were watching TV. We were watching Cutthroat Kitchen, an intense cooking competition, and at least two of the contestant's were triggering me with their sharp/whistle-like "s" sounds. I was trying to enjoy it, but I was visibly irritated, and I plugged one of my ears and tried distracting myself on my phone. It was at that moment when Elizabeth got up to do something, and she asked "You ok?" Without thinking, I said "Yeah!" And I smiled. I realized my mistake as soon as I said that. I was so used to saying "yes" to that question, because when I'm being triggered, I can't concentrate on trying to explain why I'm not ok. However, when Elizabeth went to sit back down, she grabbed the TV remote and turned the volume down. The best part? I didn't have to ask her to do anything, she just did something that helped me, whether she knew it or not. I smiled slightly, and immediately felt better. The trigger noises were reduced to a more tolerable level, and I could deal with that. I silently thanked Elizabeth and thought about messaging her later that what she did helped me cope a lot better. When I got home, that's exactly what I did, and she said it wasn't a problem at all. I was lucky enough to meet Elizabeth and become best friends with her, and it's amazing that she knows when I'm actually ok, and when I'm not ok. I am aware that many misophonia sufferers have best friends who aren't that supportive. I've read many posts on misophonia groups detailing their negative experiences during hangouts with their best friend, from doing the trigger more just to annoy them, or actually ceasing to do the trigger but seem annoyed that they had to stop. I am sorry for everyone who has a best friend that isn't supportive. Perhaps starting a conversation about misophonia with them and encouraging them to ask questions will help. Perhaps your best friend just doesn't know enough about it, and doesn't see it as a big deal. You could print/bring up articles from the web on your phone and show them that you're not making it up if they're hard to convince. I'm incredibly lucky that my best friend is as supportive as she is, and I can't stress enough how much that means to me. It's important for everyone's best friend to be supportive, because it's mostly their support that keeps you going, and keeps you from giving up. [Read More]

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Almost every researcher on the planet would like to stand up and say that they care more about research than they do about their own ego and their own perspective of their research. I would argue that every single one of them, even the most noble, and most ethical among them, are wrong. Ego is central to the human experience. We appreciate our work because we believe in it, and when you spend years, and often decades, in a field, you are bound to have grown emotionally attached to this work. This becomes a problem when egos get in the way of new research, but more insidiously, of researchers who omit other studies and researchers because by speaking of their peers more, their peers gain recognition. Grants and funding are central in the research world. Notoriety and publishing credits all go toward your ability to generate funds. With this in mind, a researcher may be cautious at reaching out to a fellow expert. If that expert has more papers than them than their name on this study further bolsters the image of their competition. In a perfect world there would be no competition, only good ideas, and experts working together to further the research and understanding of misophonia. And yet, we do not live in a perfect world, and probably never will. So-what can be done about this? It's important that researchers are aware of other studies and are not omitting citations or perspectives on their work that paints a fuller picture of disorders, and yet, we know this happens every day across all scientific disciplines. In some cases, this may not even be an implicit bias, but a more stringent view which does not allow for reflection on cross-disciplinary studies (I'm looking at you, behaviorally focused or cognitively focused groups). I'm also not attacking one particular researcher. It is a grueling field to finish a bachelor's degree, then master's degree, and then an additional give years of doctoral study only to have to fight tooth and nail for a scrap of funding for your studies. At this point, I am sure that only gluttons for punishment are researchers because the field is so unkind and unforgiving to its dedicated members. I think a lot of the problem lies with how research is funded at a policy level. Who is funding the research? Are they looking at the bigger picture of researchers? Or, is funding based on some sort of popularity contest? Guidelines for funding research are spotty at best, at worst they are a popularity contest. A commitment to scientific study must come from both the funders, and the researchers, and the community that is impacted by this research through advocacy. This commitment is one that must be ongoing. [Read More]

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These products could be useful for those with sensory disorder (SPD, Misophonia). Please note, we do not endorse specific products and merely provide these as a guide. Alternatively, local shops might have good deals on these products. Please submit a product review if you try a product or currently have tried one. You can read others' reviews here. [Read More]

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2017 is the year of Fake News, false hope, and the year where the divide between miracle and science has been raised so high, so wide, that a clear chasm has formed. - so why would 2018 be any different? Science has been pushed to the side, deemed elitism. Real doctors, I am told, are not ‘fixing the problem’ they are simply ‘ignoring the issues’. Of course, these comments came due to the disorder Misophonia – a neurological disorder where otherwise normal sounds cause a strong reaction – anger, frustration, and what can feel like physical pain. As of yet, there is no cure. Yet, we are still told that real doctors aren’t doing enough. They aren’t treating these patients – these frustrated patients that believe that a cure should be manifested from desire alone. No matter how many articles put out about how a cure doesn’t exist, no matter how many times Duke University refutes claims by ‘fringe’ treatments, and no matter how many researchers and medical professionals concur, ‘there is no treatment’, this desire for false hope persists. This false hope is so widespread, so permeated in the minds of some sufferers, that it is more damaging than helpful. How, you may ask, can hope be damaging? There are facts, and there are beliefs, and there are things you want so badly to believe that they become as facts to you. Julie Beck, The Atlantic Hope is damaging when it stands in the way of research. It is damaging when persons, instead of actively seeking answers, are spreading nonsense cures. When people who otherwise seem intelligent, are sharing ‘10 ways to bust your belly fat’, or ‘how I cured my Misophonia’, instead of actively following the science – the medicinal evidence. Now, for those looking to lose weight, there’s good news – doctors can actually help with that! For persons with Misophonia, it is the doctors and researchers you are actively shunning that are your best hope. Instead of spending thousands of dollars on a promised “cure”, you could be investing in research. You could be investing in programs that actually provide hope for your disorder. Action is hope. There is no hope without action. Ray Bradbury   I have been called elitist because I refuse to budge and support false cures. I refuse to give a platform to the people that have been labeled “such a nice guy”, despite selling false hope – hook line and sinker, to desperate people. I know that I cannot change a person’s mind. They are going to follow their own confirmation bias, and continue to avoid the answers served up by professionals. After-all, what would a neuroscientist know about a neurological disorder? Certainly, a Psych Doctor has less of an understanding of the brain than your average Joe. School, as we know, simply sucks up all of a person’s knowledge and makes them spew random ideas, without any factual basis. It can be polarizing to realize that the cure to your problem is not simple. If you have a child with a disorder like Misophonia, you have to realize that your child isn’t going to be able to eat at the dinner table with you – the vision of the 1950s-perfect family isn’t right for yours, and that’s okay. Instead of seeking miracle cures, you need to understand your child’s needs, and find relevant coping skills that can lessen the severity of the disorder. This is entirely possible with coping skills, Occupational Therapy, and the work of a trained therapist. What is not possible, is to fix any damage your child may incur due to false treatments. Medical research is done in ethical environments. Children are not tested on with new cures, before they have been vetted. Clinical trials are done in controlled environments – science, while often changing, takes its strength from ethically based treatments. There is a reason why your doctor isn’t ‘helping’ you with a condition that has no cure – because it is unethical to simply try random pills hoping one might work for a condition they hadn’t even heard of. That reason, of course, is that it’s highly unethical, and possibly dangerous. Luckily, these doctors are following the “do no harm” principle. This is a good thing. It can be scary to realize that a cure doesn’t exist. There is no miracle pill that will simply erase Misophonia, so, people are drawn to ‘providers’ that claim otherwise – they have fixed the disorder, you will be fine, everything is okay. This feeling of hope can get people through, make them feel like there is hope. That’s great – at first. But, what happens when you have drained your bank account and the cure still hasn’t come? Instead of pouring money into false hope – people could find more value in supporting science. Choosing to fund answers, and following closely as developments are made. I have hope because I know that the studies at Duke, NYU, and various universities, are actively seeking answers. Real, tested, vetted answers that also further our knowledge of the brain. It’s exciting that science can actually find out the mechanisms of a disorder, and even help treat it. I’m all for hope, but I think hope should be matched with action – and science. [Read More]

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The Grinch is one of the most memorable and complex characters in holiday folklore. Known for his disdain for the Christmas season and his plot to steal it away from the cheerful residents of Whoville, the Grinch’s aversion to the holiday has been widely analyzed. But what if there’s more to his story? What if his famous hatred isn’t rooted in mere grumpiness, but in a neurological condition called misophonia? Let’s explore how the Grinch’s experience with sound might provide a new lens through which to understand his actions. Understanding Misophonia Misophonia, which translates to “hate of sound,” is a condition where specific sounds trigger intense emotional or physical reactions. These reactions can include irritation, anxiety, or even physical pain. Common triggers include repetitive noises such as chewing, pen-clicking, or loud, exuberant laughter. For someone with misophonia, these sounds are not just minor annoyances—they can feel like an assault on the senses. Whoville: A Sonic Minefield Picture Whoville during the holidays: caroling at every corner, the chaotic clatter of Christmas preparations, the unrelenting chiming of bells. For someone like the Grinch, this environment would be a nightmare. His mountain hideaway might have been less about avoiding people and more about finding respite from the relentless auditory assault. Consider his iconic complaints: “All the noise, noise, noise, NOISE!” This isn’t just a character grumbling about celebrations. To someone with misophonia, the overlapping sounds of music, laughter, and chatter would be unbearable. The Grinch’s reaction could be rooted in the pain and agitation these noises cause him, making his disdain for Christmas more of a coping mechanism than a conscious choice to be mean. Misophonia and Emotional Isolation One hallmark of misophonia is the toll it takes on social relationships. Those with the condition often struggle to explain their triggers to others, leading to feelings of isolation and frustration. The Grinch’s withdrawal from Whoville could stem from repeated negative experiences with the town’s noisy festivities. Over time, his isolation might have transformed into resentment, fueled by the lack of understanding from those around him. A Heart Two Sizes Too Small? Misophonia doesn’t just create discomfort; it can also lead to emotional exhaustion and heightened sensitivity to other stressors. The Grinch’s “small heart” might be a metaphor for his emotional burnout, a common experience for people living with chronic sensory challenges. When the Whos celebrate Christmas despite losing their material possessions, the Grinch is exposed to a version of the holiday without its overwhelming auditory triggers. This moment could symbolize a turning point, where his heart expands in response to a newfound peace. Reframing the Grinch’s Story Understanding the Grinch through the lens of misophonia shifts the narrative. Rather than being a villain, he becomes a character struggling with a condition that few around him understand. His actions—while misguided—reflect a desperate attempt to regain control over his environment and escape his sensory triggers. A Holiday Lesson in Empathy The story of the Grinch can serve as a reminder to approach others with compassion. For individuals with misophonia, everyday sounds can become sources of distress, and their reactions may seem disproportionate to those who don’t share the same sensitivities. By considering the challenges faced by those around us, we can create environments that are more inclusive and understanding—not just during the holidays, but year-round. So, the next time you watch How the Grinch Stole Christmas, consider the sounds of Whoville through his ears. Perhaps the Grinch isn’t a villain at all, but rather a misunderstood soul seeking solace from the noise. DOWNLOAD THE FREE MISOPHONIA HOLIDAY SURVIVAL GUIDE Download here: https://misophoniafoundation.com/shop/the-misophonia-holiday-survival-guide/ [Read More]