Shaylynn Hayes

@shaylynn-hayes | contributor
Shaylynn Hayes is a writer, advocate, graphic/web designer, and student. She is the Editor-In-Chief of Misophonia International and Author of "How We Survive Ourselves: A story about Depression, Misophonia" (available here: https://amzn.to/3eFDs53), "Acceleration" and "Full of Sound and Fury: Suffering With Misophonia". Misophonia has created trials and tribulations, but it’s also changed her life in good ways. Shaylynn spends much of her time advocating for misophonia.
Shaylynn Hayes

Realizing My Dreams of Becoming a Published Author With Mental Illness

Roughly 10 years ago, a family member whom I won’t name made the following statement when I told him I wanted to be a published author: “You have a better chance of ending up in a mental hospital in Dartmouth than you do publishing a novel.” I was hurt and I wanted to cry. The truth was I was struggling with mental illness. Something I’m not sure he knew at the time. His comment was about the odds of being published—which, to his credit, seemed abysmally low for a small-town Nova Scotian 16-year-old girl. In the years since, I’ve learned that my “treatment resistant depression” was actually obsessive-compulsive disorder (OCD) that was never properly diagnosed by a rural, understaffed and undereducated mental health system. I was lost in the shuffle. Psychiatrists tried SSRIs, but the dosage was never enough to scratch the surface. I spent 10 months sick from one SSRI, and the battle was uphill for years. I also live with misophonia (where sounds cause a fight/flight/freeze reaction) and my life was turned upside down once more—I am an outlier not often mentioned in the small yet growing body of literature on misophonia (see the literature review), and my misophonia appeared when I was 19. I’ve often called this, “crawling out of one hole to trip into another.” All this said, and with a bit of indignant reflection, my relative was probably right. I did have a better chance of ending up in a mental hospital than I did publishing a novel. I struggled for years, despite never actually being in an in-patient facility, I had a train of psychiatrists, psychologists and then GPs who tried blends of pills and therapies. Despite these setbacks, I am today a published author. I have written both non-fiction and fiction, though fiction writing is held closer to my heart since my proclamation of “becoming an author” was always about storytelling and my passion for fiction. Last year I published my first novel, “Acceleration.” After 10 years of what feels like a mental-illness rock climbing event, I can say that I finally feel like maybe, just maybe, mental illness can’t rob me of my identity. Most recently I published the hardest story I ever wrote, “How We Survive Ourselves: A story about Depression, Misophonia, and Dissociative Identity Disorder.” This book was challenging because it’s about mental illness—particularly with a borrowed history of my depression and misophonia (as well as a storyline on dissociative identity disorder). I learned that my mental illness was not a detriment to my writing – in fact, it was an enriched, lived experience that could help me to tell my story (and that of others) to the world. It can be difficult being mentally ill and watching films like “Glass” or other absurdities on mental illness that miss the mark. Sharing our stories is one of our most powerful tools – whether you’re a filmmaker, writer, songwriter, composer, classical artist or any other type of creative. The way we express ourselves to the world—neurodiversity and all— is so important. I’m proud of myself because I did have a greater chance of ending up in a “mental hospital.” I’ve struggled. I’ve overcome. I published because my personality is not cancelled out by my mental illness, and in some ways at times, it can even be enhanced. Don’t get me wrong—I would love to not struggle with depression, OCD and misophonia. Every day is a challenge. But, the moral of “How We Survive Ourselves,” and this article, is mental illness is not something that can be snuffed out. It is a daily part of our lives. The way through is by accepting this part of ourselves and understanding that perfection doesn’t exist. You can be mentally ill and a published writer.

Shaylynn Hayes

Long Waiting Lists for Mental Health Services in Canadian Maritimes

I have been an advocate for my disorders since 2012. It’s been a grueling battle spanning two provinces — Nova Scotia and New Brunswick. I’ve written internationally for The Mighty, The Huffington Post and Physician’s Weekly on my struggles with misophonia, a disorder that causes fight or flight responses from normal sounds like whistling and chewing. There is no treatment for misophonia, and curious persons can check here for more information. This story, though, isn’t about my lesser-known condition. It’s about anxiety, obsessive thoughts (perhaps obsessive-compulsive disorder, but not diagnosed) and depression. Disorders as old as time — these mental illnesses have been studied. There are treatments, and there are numerous groups that aim to combat stigma. I commend them for their efforts. I’ve noticed in the past 10 years how much easier it is to discuss mental illness with my friends and family. There is no shame when I inform a friend I had a panic attack and can’t show. That’s a great development, but it’s not enough. This focus on stigma-busting and awareness has done a great job, but it’s not stigma that’s harming mental health patients in the Maritimes. All the awareness in the world cannot help somebody who gets their first appointment with mental health services — perhaps from the emergency room (ER), a self-referral or a doctor referral, only to be told in their general evaluation, “Yes, we understand you need care, but the wait list is one to two years.” Years. If you aren’t suicidal, a danger to yourself or others, you can expect to wait over 12 months to see a psychologist or psychiatrist (some emergency sessions could happen for specific patients). The criteria for care seems to be, “if you don’t want to die, just wait it out.” That is, unless you’re one of the fortunate who have insurance or are willing to pay out of pocket. A service that ranges from $100 to $150 per private session without insurance. Mental health awareness is important. However, we need immediate action to fix a broken system that pushes people past the limits of the “socialized” system. Desperate for care, many have no choice but to go without treatment or go into debt (or hope to hell they have private insurance) just to get by. The first step to getting help — making that call, going to your doctor and admitting you have a problem isn’t easy for people with mental illness. Imagine finally making this very brave step only to realize after busting through stigma and your own emotional battle with finding care … there is no care. People who are struggling with mental illness should not have to self-diagnose, rely on sketchy internet videos and applications, find library books in hope for answers or be told that they should “just try yoga” or “meditate” (all suggestions I’ve been given when discussing the lack of care). Mental illness is a serious thing and it requires medical attention. The problem is there is no medical attention to be found, and the ERs are already full. Have you ever approached an ER doctor with mental illness? They often have few suggestions. Many suggest you go to mental health services, where you’ll be sent back to this loop of waiting. I don’t know the answer. I’m not a policy-maker despite studying political science, and I know these issues are complex. I don’t know how to make more mental health professionals stay in New Brunswick. I don’t know what can be done. What I do know is that mental health in the Maritimes needs to become a hot-button issue. We deserve better than a service that requires us to wait it out (until we get worse) or paying to play. This isn’t what our socialized health care system is about. It’s time we see mental health for the serious issue it is. To increase my medication for depression, I had to pay for an online doctor. In Canada, this is supposed to be unheard of. Socialized medicine is supposed to cover our basic needs, but unfortunately, I decided to “pay to play” to obtain care. I have a psychologist appointment in a couple weeks, which I will again be paying for (I don’t have insurance, as a Canadian, I didn’t realize how necessary this would be). As awareness for mental health grows, we need to become more sensitive, all around the globe, to the rising demand for services.

Shaylynn Hayes

Attending University While Living With Misophonia: Advice

Once upon a time, I was a university student trying to get by. I was also spending countless hours in the bathroom crying. Some days I would just pack my stuff, skip the bathroom, and head right back to the bus stop. It didn’t matter how many classes I had left that day, I had to get out of there. I had skipped right past “fight and freeze” and landed on “flight.” No amount of money, coaxing, or bribery could have convinced me that I should stay. Believe me, the hefty $10,000+ bills I still harbor from student loan debt are proof of that. A few years later, I still haven’t finished my degree. Don’t worry – this isn’t one of those stories where everything turns out to be horrible. In fact, I’ve mostly come to terms with the alternate path that misophonia has carved for me. The first time misophonia (or misokinesia – the debated term for when movements also cause the fight or flight reaction) really started to appear was when I was in university. Before this, I only had a few moments of triggers, such as crying while somebody whistled and not really understanding why. Eventually, after about a year, the triggers started to compound so much that I was at a loss. Through advocacy, I learned about my disorder, and over the past five years I have learned more than I ever imagined about something that never even existed in my mind until I was almost in the double digits. In January of 2014, I wrote the following excerpt about misophonia. At the time, I was undiagnosed, and I was confused and scared (which I am sure many who struggle without answers still are). It’s hard to believe I wrote this before I ever heard the word “misophonia.” In a way, it’s heartbreaking for me to look back, but it also gives me hope because I have come a long way. “Homework isn’t hard, the reading is fine. What I can’t deal with is the burden my anxiety can be in a classroom environment. Half of the time I have a scowl on my face in class, and probably come off as a bit of a condescending person. Whenever people whistle, click their pen, or shake their legs, it’s extremely distracting for me, and for a reason I cannot explain, it sends me into a horrible state. Leg twitching in my peripheral vision has literally brought me to tears. I’m so frustrated that I can’t just ‘get over it.’ I understand restless leg syndrome is a real thing, but so is the anxiety that I suffer every time I enter a classroom. I understand that it would be rude to approach somebody and ask them to please stop torturing me. Instead, I often stew and try not to get upset, but instead I usually just end up irrationally angry. Oftentimes I can actually feel the vibrations on the floor from people shaking behind me, even if they’re far away. A couple of weeks ago I started hyperventilating when somebody was whistling. Why?” Misophonia was confusing mostly because I didn’t know how to cope. Hell, I didn’t even know there was such a thing as misophonia. I was lost in my own mind, worried for my future, and worried that this “thing” that was wrong with me was going to control the rest of my life. In some ways, it might. However, this doesn’t mean that it gets to make all the decisions or choose my life path for me. (It just might mean I’ll want to find a quiet place to live and might not frequent restaurants.) The right solution for me was to switch to an online school. For some, coping skills might work in the classroom and working with your therapist or doctor can help you figure out what’s right for you. Working with an occupational therapist (OT) who understands misophonia can also be invaluable. You can find licensed providers from this site. What’s important to remember with misophonia is that accurate knowledge is power. If you don’t know where to start, you might benefit from MIsophonia Education, which was founded by the head of the International Misophonia Research Network to provide educational content for parents, people living with misophonia, clinicians and teachers. In October, there will be a workshop on “Misophonia at School (and College).” If you’re dealing with the challenges of misophonia while at school, please know you’re not alone. There is a name for this disorder, and we’re all in it together. And research is going to help us all.

Shaylynn Hayes

Understanding What Misophonia Is and Isn't

Confusion. If I were to choose a word that perfectly explains the world of misophonia, advocacy, and the pursuit of answers (particularly on Google), the word I would choose is without a doubt, confusion. The waters are often muddied by misinformation. Like all things in the modern world, misophonia has been branded – however, this branding has been skewed and doesn’t necessarily reflect the condition. Since misophonia is a new condition, it is ever-important that people looking for answers are able to find accurate medical information. Instead, they are met with links to so-called ‘experts’ that barely understand the disorder. What do they seem to understand? Cash. You see, whenever a new condition comes about – there’s always a character who thinks they can make a fast dollar. The ‘cures’ and ‘treatments’ are based on their own research – and because they got to the party early, they’ve saturated the “market” – as though misophonia, a medical condition, is a market. I wish my words were simply hearsay or formed from my own biased opinion. Unfortunately, there’s firm evidence to the contrary. In an article for the New York Observer, Dr. Jennifer Jo Brout details her experience with a psychiatrist. “I asked the author of many of these studies why he and his colleagues were doing therapy for misophonia when there was absolutely no consensus as to what the disorder was (and when none of their therapies had been trialed). During his transparent explanation, he slipped up and referred to people with misophonia as potential ‘consumers.’ Funny, I had never quite thought of patients as consumers.” As I have explained in an article on HuffPost, “Dr. Pawel Jastreboff, who coined the disorder in 2001, has worries about doctors jumping the gun and moving on to treatments so fast. He asserts that when it comes to the toted treatment methods that, “we do not have any clear clinical data.” Since there is not enough clinical data, this furthers worry when it comes to misophonia providers.” So now that we’ve established there’s confusion about misophonia… what exactly is it? Though there are few studies that have been published, it’s been established that misophonia is most likely a neurological condition in which the amygdala is having an over-responsive reaction to otherwise normal auditory and visual stimuli. It’s not simply a rage disorder, nor is it “sound rage,” or “chewing rage.” It is a complex sensory disorder that impacts the brain’s ability to process information. The emotional reaction, which accompanies the disorder, comes after the initial physiological response. It’s important to differentiate that the anger, anxiety, confusion and sadness often linked to misophonia come after the initial response. Misophonia is not simply anger or rage at certain visuals or sounds – these reactions come after our body fails to understand properly what is and what is not a threat. Imagine that you were locked in a room with a rattle snake – for people living with misophonia, regular sounds become this rattle snake. We are unable to shake the panic, the fear, and the fight flight response – because our brains do not understand that a threat is not present. Since there is no official diagnosis, knowing you have misophonia usually comes from identifying that you, or a family member have an over-active response to every day sounds. This is more than mere anxiety or anger – the person may be sweating, feel like they have bugs crawling under their skin, tightness, and a physiological ‘jerking’ sensation as soon as a sound happens. Oftentimes people diagnosed with misophonia seem to have symptoms that worsen over time, and exposure to these sounds causes the experience to become worse – sensory information is cumulative and you cannot simply ‘get used to it.’ If you think you have it, chances are, that you do have a form of auditory over-responsivity. An audiologist, doctor, or psychologist can help confirm this, but since there is no diagnostics criteria or treatment, there is little else that can be done by them. Coping techniques, sensory diets (which would be implemented by occupational therapists), and white-noise generators may be beneficial. Currently, the International Misophonia Research Network operates a site that lists coping providers. Still Confused? On August 21st, Dr. Jennifer Jo Brout will be hosting a webinar for patients, clinicians, journalists, researchers, teachers and parents that provides a basic understanding of misophonia and helps differentiate between myths and facts. What’s most important for people living with misophonia is that they know they are not alone, their condition is real, and it’s not “all in their head.”

Shaylynn Hayes

Tips for Parenting a Child With Misophonia

Since misophonia is a lesser-known condition, parents might feel hopeless upon discovering that their child has misophonia. Unfortunately, there is no official treatment or cure for misophonia, but this does not mean that parents are in the dark when it comes to their child’s misophonia. While children with sensory needs might have special considerations, they are fully capable of having a happy, healthy and fun childhood. Here are some tips I’ve found helpful if you’re parenting a child with misophonia. 1. Learn all you can about misophonia. Resources such as Misophonia Kids can help you learn about your child’s condition, and what it means to be the parent of a child with a sensory disorder. Since misophonia is a lesser-known condition, it is important to find accurate information. Reading the literature review on misophonia can provide an overview of current research out there. The first step to helping your child with misophonia is to understand that it is not their fault, and that it is not “all in their head.” 2. Talk to your child’s doctor, even if they don’t know what misophonia is. While your child’s doctor might not have heard of misophonia – this does not mean that you shouldn’t speak with him or her about it. Advocacy starts with parents stepping up and taking their child’s needs into consideration. A helpful approach to discussing misophonia with a clinician is to bring a print out of a doctor’s guide that explains misophonia in a helpful way. Do not be discouraged if your child’s physician has not heard of misophonia – awareness is growing, and by discussing it with your child’s doctor, you are spreading knowledge. 3. Discuss possible accommodations with your child’s school. Some accommodations could be helpful for your child. Work with your child’s clinician to draft a letter that outlines possible accommodations that could improve your child’s learning experience. Ideas that can help include: headphones with white noise, the ability to leave class and calm down, stress balls and other “toys” that help stress management, as well as the ability to test alone. 4. Make your child’s bedroom a sensory-safe space. Your child will calm down much faster if they have a place they can go to recover. Sensory information is cumulative, so it is very important to have time to “cool down.” Since your child is not habituating (getting used to) sounds, having a place where they can adjust and go back to a calm feeling is quite important. Sensory tools like weighted blankets as well as paint colors your child enjoys, stuffed animals, a white-noise machine and as much sound-proofing as you’re able to manage, can help your child feel calm in their bedroom, and can lead to less meltdowns. 5. Try not to force “trigger” situations. While some families feel the urge to enjoy “family meals” together, you should consider letting your child eat alone if they are triggered by chewing. There aremany other family activities such as walks, board games, and television time that can be spent together without forcing the child to endure triggers. 6. Consider a multidisciplinary clinical approach. A team of audiologists, psychologists, occupational therapists and other providers might be able to work together to help your child cope with misophonia. You can find providers at this site, Misophonia Providers.Different providers offer various levels of support, and by working together, they can come up with a management plan for your child’s sensory disorder. While misophonia can be hard to deal with, it’s veryimportant parents remember that while your child is struggling, this does not mean they cannot enjoy activities. By working around misophonia, children can learn to cope and adapt to the world around them. Parents looking for more information and help for misophonia can visit Misophonia Kids.

Shaylynn Hayes

The Way the Show 'Dear White People' Portrayed Misophonia

As I turned on “Dear White People: Volume 2,” the last thing I expected to hear was the word “misophonia.” I had to go back and listen again, certain my overly sensitive hearing had failed me. Unfortunately, it had not. The conversation was between Sam and her best friend Joelle as they walk through their satirized Ivy-league campus. The show makes a point of zooming in on flip-flops, a noise frustratingly unbearable for those of us who live with misophonia in real life. “When does the constant drone of flip-flops become background noise?” Joelle asks. A strange question for anybody who has misophonia, since we know it never will. Joelle continues and exclaims, “My misophonia is triggered as f*ck.” As Joelle complains, there is no obvious pain on her face. Joelle does not seem to freeze, a particularly telling sign of the fight/flight/freeze reaction. In fact, Joelle seems relatively fine. “Oh, misophonia? She does braids out of Waller, right?” Sam quips. “Oh, look at you, making jokes,” Joelle says, barely offended, she continues, “It’s a hearing condition, and also a great name for an Outkast album.” Just like that, misophonia was made into a quick, witty, original joke. Those who haven’t heard of misophonia might be intrigued – what a strange fact – people are bothered by flip-flops? Joelle’s reaction, and the subsequent banter between her and Sam make for a funny exchange. However, I don’t find misophonia. Misophonia is rarely that easy to tolerate. It is not an annoyance at flip-flops, chewing, or any other sound. Misophonia involves a great level of emotional fatigue and pain. As I continued to watch the episode, my awareness now heightened, I wondered if this plot point would come up again throughout the episode. I wasn’t surprised that it hadn’t. Our character Joelle, supposedly having misophonia, is now living with Sam in a dorm room. I am sure there are persons with misophonia that have roommates – but I personally cannot imagine living in such a small space with a potential trigger. Sam’s phone notifications go off constantly, and she types on her computer all night. Joelle says nothing and sleeps blissfully throughout the ordeal. Joelle later eats chips (a major trigger for many with misophonia) with Sam, also chomping down on the crispy snack. Joelle goes so far as to buy Sam a pair of flip flops for the shower – the same item used as a plot device for our one-off joke on misophonia. There is almost no representation of misophonia in popular culture. I’d argue it has never once been accurately portrayed. The problem with the “Dear White People” misophonia reference is their character likely does not have misophonia. Joelle and Sam’s conversation about misophonia is telling. There is a very real conversation that people with misophonia have with their friends when bringing up the condition for the first time. It is rarely a calm conversation – it is a hard talk, often filled with heightened emotions and pain. Many are met with disbelief — far worse than a joke. Misophonia is not about the annoyance of flip-flops, it is much more. The misery of our condition, including the isolation, is hard to show on television. However, misophonia is more than a quick joke. We are real people who are struggling. While it’s great we are starting to get more awareness, without context, this does little more than cause people to question if it’s even a real thing. I think back to Kathie Lee and Hoda making fun of misophonia on live television, “it sounds like ‘misophoney,’” they said as they laughed. Coming so soon after the “Criminal Minds” episode, which incorrectly classified misophonia as a psychological disorder, I find this deeply concerning. Awareness for misophonia without context might very well prove to be damaging. As the International Misophonia Research Network (IMRN) continues their scientific journey, misophonia in pop culture may become an interim threat to truth before accurate information can fill the gap. While exposure to the name  “misophonia” could help people get diagnosed, I wonder — at what cost? Out of all the representations of misophonia – which are few and far between, “Dear White People” didn’t do too bad. The problem was a lack of context. Misophonia is not necessarily a “hearing disorder,” but the general public won’t necessarily notice a large difference between a “hearing disorder” and a neurological disorder involving auditory processing. This is understandable. The representation falls flat when the character exclaims brazenly that her misophonia is “triggered as f*ck,” the same way a person who is frustrated their car keys weren’t left in the right place might say their “OCD is acting up.” Neither have the condition they are mirroring. While “Dear White People” trivializes misophonia, I am thankful they did not focus on the rage, specifically “chewing rage,” and did make an earnest attempt to mention the condition on TV. However, I am not happy that popular culture is starting to use a very real condition as the brunt of a joke. Those with misophonia need to keep talking about it from a real perspective. When we speak of the disorder, we must ensure we are encouraging an accurate representation. Unfortunately, in today’s society, it’s very easy to create a meme about how “frustrated” we are, and we end up being minimized to generalized sound bites. For resources on misophonia, please visit www.misophoniainternational.com

Shaylynn Hayes

What It's Like to Live as a Young Adult With Misophonia

Like a ghost, the memory of finger-tapping has become my own personal poltergeist. I feel jolted just as one would if the doors were slamming – if the lights were erratically going on and off. I lie in bed and I replay each finger tap. I don’t want to think about it – but like bullets from a gun I replay every second. Bump. Bump. The ferocity echoes through my brain – the noise, god the noise – it’s just as loud as it was in person. At 24 years old, I should be living every moment of my life to the fullest. I should be partying, making mistakes, and spending long wistful nights walking barefoot in the park. I should be kissing strangers in alleyways, because I’m young and mistakes are part of what makes life worth living. I should be drinking a little too much, and stumbling home just before the sun rises. I have a desire to do these things. I want to be young and careless. I want to go out for the night without prior planning, and I want to live my life to the fullest. Instead, I am trapped. I am locked into a world that is dictated by a disorder that suffocates my lust for life. Every decision is marred by its touch. I have gone to clubs, and I have had some fun, but I am increasingly losing my ability to be young and carefree. Instead, I am young and restless. I have misophonia. While the internet is busy classifying us as strange, weird, or violent because of our disorder, the truth is a little more depressing. It is true that many of us are upset by chewing – but this disorder goes much further than frustration when our family members crunch down on potato chips. Many of us offer struggle from sensory problems similar to that of sensory processing disorder. This disorder is more than an aversion to sounds – it feels like an all-encompassing prison. The strangest part is when there are no sounds, I am normal. It is as though the disorder has evaporated. I’m still myself. I will be going about my life like everybody else. I walk like a person that has never been troubled. Everything is fine. Until it isn’t. Imagine for a second you are trapped in a cave with a dripping faucet. This faucet would continue, and eventually become torture. For those of us with misophonia, we are immediately trapped in the cave. Because of our amygdala, we do not get used to sounds. Instead, we are bombarded by a fight or flight response. We are constantly sick, anxious, and living in a world where our bodies are sensory taxed. Much deeper than simple anger, we are often isolated from our lives. There is no cure for misophonia, and increased exposure can make the disorder worse. Because of this, and the cycle of pain and anxiety, we are more likely to avoid unnecessary social events. Further than that, if I were to push myself too much, I am likely to end up with a severe migraine. The normal life of a 24-year-old is something I’m not going to have. It’s taken some time to adjust to the idea that unless the research of the Misophonia and Emotion Regulation Program of Duke is successful, I may be living with this severe condition for much of my adult life. Truth be told, I’m terrified. The life of a young adult with misophonia is a confusing one. I have not been out or partied in over a year. Since social groups are often how we define our youth – I have had to find interests that are solitary. I haven’t been on a date in a year either. As the disorder worsens, my interests have been chipped away one by one – the memory of events, and the risk of them repeating have been the deciding factor in many of my activities. If I were to go on a date, it would have to be something small and solitary. Movie theatres, due to the popcorn, leg-shaking and loud noises, are simply impossible. Restaurants also have chewing, and I generally avoid any situation where people are sitting down. Sitting in a car can be hard, if the person rests their arm on the window sill or taps their fingers on the car wheel. I cannot control my fight or flight reaction, and it is hard to explain to others why it is happening when there are little resources and awareness to point them to. I am exasperated as I try to explain that it is not them I am mad at, but the sound itself is causing my brain to go intro over-drive and short circuit. Sadly, it has become easier to not explain at all. So I simply stay home, and have more control over what’s going to happen. A day for me usually begins with the night. During normal daytime hours there are honking horns, lawn-mowers, buzzing motors, screaming children, and persons that inevitably may show up at the door. Instead, I have opted for a life that takes place during the hours of 8 p.m. and 10 a.m. There are still noises, even in this sheltered life, even in a world that is considered rural compared to cities. No days are without triggers, and as these triggers mount, I become sick. After triggers, my muscles tense so tight that I have back pain, I become nauseated and dizzy. If I do not remove myself from the situation, these symptoms become worse. The longest migraine from misophonia that I have had was seven days long. When dealing with reactions this strong, avoidance becomes the main tool in your arsenal. The world of misophonia and over-responsivity means that some clothes are too tight, lights are far too bright, and we are more likely to get migraines. Scent-related allergies are common, and perfume can quickly make us sick. Visuals can cause the fight or flight response too. Effectively, we are being threatened by every day occurrences at a level that can be hard to explain. I feel like we are also attacked by media that is convinced we are over-reacting or are a “think-piece.” After all, it is strange and unruly to think the regular world could be causing people so much distress. Unfortunately, I am here to tell you that this condition is very real. The life of a young adult with misophonia is the life of a girl who was making As and Bs in university her first term – then, as triggers grew, attendance dropped. Eventually, to continue at all, I had to switch to online school. I became so suffocated by the triggers, that I could not hear what was going on in the classroom. To even survive the class, I would have to distract myself – and nothing was enough to distract from pen clicking, from legs shaking and other students that were simply trying to learn. For me, I was trying to survive. Like many other young adult experiences, the college life was another that I had to step back from. While I am still finishing my degree online, it is taking much longer. The social connection and wonderful memories that accompanied my first year, have been replaced by my bedroom and textbooks. While I love learning, there is a loss that has taken place. Misophonia is not chewing rage, sound rage, or “murderous rage.” Misophonia is loneliness. It is the loss of social relationships and the decaying of what we could have been, or what we used to be. Misophonia is a daily fight and struggle. We must remain hopeful despite every life change, despite the sickness and despite being trapped in fight or flight much of our days. Misophonia is resilience, because if we can survive this and still accomplish some of our goals, we have fought the toughest battles of all – the battle against our own brains. I stay strong because I support the research at Duke. I believe the International Misophonia Research Network (IMRN) is working diligently to find solutions. I stay strong because I have to be, but I am not an ordinary young adult. The hardest battle I am fighting is against the life I perceived. Instead, I am cutting out a life that fits my needs. My life may not be that of an ordinary young adult, but that doesn’t mean I’m not going to have hope.

Josie Joubert

How Frustrating It Can Be Treating Depression With Medication

Yes, they told me it was going to be difficult. And yes, they warned me that people, even my friends and family, would think I was faking it or that it just isn’t “real.” They even described what was going on biologically. Something was making me feel hopeless, and purposeless. They explained to me how the drugs would work. Each and every one. They voiced my concerns about the worst side affects and all the other symptoms that could appear. They cautioned me not to be to hopeful about seeing an immediate effect or even an effect in the first months. They needn’t have bothered. Hope was not something I was going to be feeling for a long time. They expressed my feelings when I couldn’t describe them. They forewarned me about what I would feel in the coming months or even years. Hopelessness. Drowsiness. Fatigue. Loneliness. Sleeplessness. Confusion. Pain. Anxiety. Breathlessness. Panic. But they told me it would change. That I would different when the drugs started to work. I would become myself again. Possibly even a new and improved version. After all, what doesn’t kill you makes you stronger. And so I listened: Joy. Excitement. Energy. Happiness. Pride. Lightness. Clarity. Purposeful. Hopeful. Content. But they never told me. They never warned me. No one ever said. Suggested. Or even hinted at. No one told me. I would feel frustration. I would feel angry at myself. I would feel like I was confined to a cage. Only good enough because of the pills. Only strong enough because of the pills. Only brave enough because of the pills. Only enough because of the pills. Only alive because of the pills. They told me I would get better. What they actually meant to say is that I would become the pills. Walking. Talking. Breathing. Ever there to serve them. Enslaved by the lie. They say again and again and again I am more than just my mental illnesses, more than just the pills I take, the conditions I have. But I know the truth. And so do the pills. We are in this together, take one of us away the other will perish. Can’t wake up? Take an energy pill. Can’t sleep? Take a sleeping pill. Struggling to breathe? Take an anxiety pill Breathing too much? Take a tranquilizing pill Can’t concentrate? Take a pill Too much scratching? Biting? Bleeding? Eating? Doing? Being? Thinking? Take a pill. Take a pill! Take a pill. So don’t tell me I am like this because this is who I am. I am like this because this is who the drugs allow me to be. So in the end the doctors were right. I did feel like they said I would. Every single one. But they forgot one. One vital one: Frustration. Because one step forward, four steps back: That’s how you walk it off. Editor’s note: Please see a doctor before starting or stopping a medication. We want to hear your story. Become a Mighty contributor here . Thinkstock photo via Jeffrey Hamilton

My Child Has Leukemia. Don't Say 'Let Me Know If You Need Anything.'

I think the phrase “Let me know if you need anything” is so cliche. Most moms in a situation with a critically ill child would simply thank you and that would be the end of the conversation. Understandably, when people hear you are faced with adversity, they search for the proper thing to say and often say the above. For a cancer mom faced with making daily decisions that have the ability to impact whether or not your child thrives, thinking of the 101 things we actually have to do today, using this bland statement comes off less than empathetic. Having a healthy child takes a village, so having a child with cancer takes that village and a few extra villages. When you tell a mom fighting for her child’s life “Let me know if you need anything,” I’m hear to tell you that goes to the bottom of the to-do list. Not intentionally, but its a closed-end statement; it requires us to actually think about all of the many things we need help with when sometimes we don’t exactly know what we need. Do I think the person who says “Let me know if you need anything” means any harm? Absolutely not. I think it’s the defaulted polite thing to say. But I don’t exactly take this statement seriously. A better way to show your support and willingness to actually help is to simply observe, listen for or ask what specific things we may need help with — and then just do it, whatever it is! In the midst of something critical happening in someone’s life, it is easy to lose your thoughts and forget about all the simple things. This is when it is time to step up. Here are a few acts of love a cancer mom would be immensely grateful for: Be present. I can’t stress how much just having company means to a mom when her child is sick. If you’re uncomfortable talking about the illness, I promise you the mom would not mind not discussing her child’s illness. Help organize getting meals to the home or hospital. With apps like OrderUp and InstaCart it takes less than 30 minutes to have a hot meal delivered or an order of groceries dropped off at their home. If you’re not local and want to help, gift cards are an excellent idea. Amazon and most big name companies have virtual gift cards that are delivered straight to an email address. And Amazon has everything in life to make a hospital stay more comfortable. Offer to help with the siblings of the sick child. Take them out for a few hours, offer to help with after school activities or accompany your friend to a doctor’s appointment where you can entertain the siblings. A cancer diagnosis affects the entire family; any small gesture to the sibling of a sick child is more than appreciated. Don’t just be eager to help in the beginning. Everyone is eager to offer help in the beginning — I call it the honeymoon stage. Many don’t realize a cancer diagnosis could potentially be a life-long battle. Set your alarm in your calendar to check in and see what you can physically help the family of the sick child with three, six, nine and 12 months down the line. Just the thought of not being forgotten will make their day. Gather friends to help thoroughly clean and disinfect their home before they are discharged from the hospital. This is especially helpful if the child is immune-compromised. Something even as small as cleaning out the fridge is a huge help. Don’t forget them! A sense a normalcy clears the mind temporarily, so don’t not invite them to gatherings. Whether they are able to attend or not, please refrain from treating them like they don’t exist in your life because they have a sick child. Hopefully these tips help shed some light on things and encourage you to be present, proactive and supportive to the mom of a critically ill child. And remember, please don’t say “Let me know if you need anything.” We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Rayes

My Child Has Leukemia. Don't Say 'Let Me Know If You Need Anything.'

I think the phrase “Let me know if you need anything” is so cliche. Most moms in a situation with a critically ill child would simply thank you and that would be the end of the conversation. Understandably, when people hear you are faced with adversity, they search for the proper thing to say and often say the above. For a cancer mom faced with making daily decisions that have the ability to impact whether or not your child thrives, thinking of the 101 things we actually have to do today, using this bland statement comes off less than empathetic. Having a healthy child takes a village, so having a child with cancer takes that village and a few extra villages. When you tell a mom fighting for her child’s life “Let me know if you need anything,” I’m hear to tell you that goes to the bottom of the to-do list. Not intentionally, but its a closed-end statement; it requires us to actually think about all of the many things we need help with when sometimes we don’t exactly know what we need. Do I think the person who says “Let me know if you need anything” means any harm? Absolutely not. I think it’s the defaulted polite thing to say. But I don’t exactly take this statement seriously. A better way to show your support and willingness to actually help is to simply observe, listen for or ask what specific things we may need help with — and then just do it, whatever it is! In the midst of something critical happening in someone’s life, it is easy to lose your thoughts and forget about all the simple things. This is when it is time to step up. Here are a few acts of love a cancer mom would be immensely grateful for: Be present. I can’t stress how much just having company means to a mom when her child is sick. If you’re uncomfortable talking about the illness, I promise you the mom would not mind not discussing her child’s illness. Help organize getting meals to the home or hospital. With apps like OrderUp and InstaCart it takes less than 30 minutes to have a hot meal delivered or an order of groceries dropped off at their home. If you’re not local and want to help, gift cards are an excellent idea. Amazon and most big name companies have virtual gift cards that are delivered straight to an email address. And Amazon has everything in life to make a hospital stay more comfortable. Offer to help with the siblings of the sick child. Take them out for a few hours, offer to help with after school activities or accompany your friend to a doctor’s appointment where you can entertain the siblings. A cancer diagnosis affects the entire family; any small gesture to the sibling of a sick child is more than appreciated. Don’t just be eager to help in the beginning. Everyone is eager to offer help in the beginning — I call it the honeymoon stage. Many don’t realize a cancer diagnosis could potentially be a life-long battle. Set your alarm in your calendar to check in and see what you can physically help the family of the sick child with three, six, nine and 12 months down the line. Just the thought of not being forgotten will make their day. Gather friends to help thoroughly clean and disinfect their home before they are discharged from the hospital. This is especially helpful if the child is immune-compromised. Something even as small as cleaning out the fridge is a huge help. Don’t forget them! A sense a normalcy clears the mind temporarily, so don’t not invite them to gatherings. Whether they are able to attend or not, please refrain from treating them like they don’t exist in your life because they have a sick child. Hopefully these tips help shed some light on things and encourage you to be present, proactive and supportive to the mom of a critically ill child. And remember, please don’t say “Let me know if you need anything.” We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Rayes