Still Kickin'

    So, it has been a little while since I've updated. Honestly, just publishing the details of my disorder and how it impacts my life kind of took a lot out of me and I needed a little break. But I'm back and this is the mandatory "I'm writing again!" post.
     Writing out personal stuff had kind of a strange effect on me. Before and in the wake of my first blog posts, it somehow felt like writing was going to really make things feel better. It did, for about five seconds. Then I still had Misophonia and of course writing down my symptoms and triggers didn't make them go away. This brought on a strange, brief depression.
     The depression ended and my grandparents went away for a few weeks. I lived alone in the house for that time, with just my pets for company. It was very relaxing and I have an upcoming post on isolation that will cover my range of thoughts on that subject. Currently other things have been on my mind. Internally, I am fighting very hard to reach acceptance and some days are better than others. Writing a post kind of makes me go, "There! You wrote about acceptance, and so you must have reached acceptance!" Or "You wrote about your triggers so you have power over them now!". But none of that is really true.
     I feel like trying to be an advocate, write down my experience and spread awareness gives me some of my motivation to go on. But then there is the voice inside that tells me that I'm not really beating this, I'm not overcoming it a lot of the time. Does that mean I shouldn't try to be a voice for anyone else? What sort of example does that put out for anyone that reads this? Some of the time, it seems like most of my days are bad days. A lot (and I mean a lot lot) of days I feel like this just isn't getting any better so there is no point in trying. I have such negative thoughts and my mind struggles to focus on the positive. I think that's probably true for a lot people with Misophonia.
     So today I'm not really here to tell anyone to try and fake happiness until they are happy. Life sucks sometimes, and sometimes it sucks for a while. Sometimes certain parts suck forever and it isn't going to change. I'm not going to kid myself into assuming that one day I'm going to wake up and not have Misophonia anymore. But some days I will wake up and not be particularly sad or angry. Some days I will wake up and go through a day when I am only triggered a few times, or I only have one meltdown and then later that day I have ice cream, and that's pretty okay. Some days will just be (my) normal days and right now I'm working on that being enough to keep me going. That's a goal, right?

Still Kickin'


Kaitlyn

Misophonia and Self-Injury

This is a warning - this post will include an account of self-injurious behavior. This isn't going to be one of my more uplifting posts. Read on if you can handle that and want to gain insight into the most difficult aspect of my disorder. I felt I needed to address this issue if I wanted to continue sharing my experience openly and honestly.

     Misophonia impacts my life in a lot of ways. It kind of tends to take over everything on the bad days. Good days are any where I don't end up hitting myself, and unfortunately, that's not most days.

     When I first "got" Misophonia, my reaction to paper sounds was a feeling of pure hatred and rage. The feeling is not voluntary and at the time I had no idea why this was happening. I couldn't move past those feelings and would focus on the source of the sound - usually a classmate or teacher, sending my mental hate rays to them, hoping they would somehow sense my distress and cease-fire. Nope, didn't work.

     Eventually I started to rip paper up in response to the trigger sounds. Until I did that, I couldn't move past it. Sometimes I would just need one rip. Sometimes I had to keep ripping up and messing with paper for an extended period of time before it was enough. My purse is usually full of receipt paper in varying stages of destruction.

     Once I started to get new triggers, I realized that what I did compulsively in response to the paper sounds (tearing paper) didn't work on these new triggers. I started to develop new compulsions. In response to door slamming, clapping and repeated tapping sounds, I box my ears with one or both hands. Sometimes I'll just hit my ears a couple of times. But when the trigger is severe enough, I will go on boxing my ears until they are ringing and I can't fully hear. It's an almost trance-like feeling, swirling with anger and hateful emotions when it's very severe. Sometimes the ringing goes on for a couple of days after the episode. In the worst instances, I will hit other parts of my body as well. This is not pre-meditated self harm, but a compulsive reaction to certain stimuli.

     The emotional toll these incidents take on me is immense. I usually end up in tears, continuing to hit myself until I can stop. It makes me hate myself, hate my lack of control and the fact that I have this disorder at all. I hate the fact that I have to worry about normal, everyday sounds because my response to them is so harmful. Even when I'm in a great mood, if I end up having a self-injury episode, I'm done for the day- defeated. Anticipating episodes like this brings me to avoid a lot of situations and I often find myself sitting in my car, a safe spot.

     As far as I know, I'm not the only one who's Misophonia is so severe that there is engagement in self-injurious behaviors. Mimicking the trigger sounds and other compulsive behaviors are documented symptoms of Misophonia. However, there just isn't a ton of research or information on this disorder, especially extreme cases that involve self-injury. I am looking into solutions but I am having to do a lot of the research myself as there is no obvious answer or treatment that has worked for most sufferers. Many treatments are experimental at best.

     I know that I'm damaging my hearing. Long term, I will suffer from hearing loss. It will probably start with my right ear, the one I hit the most. I'm working on finding solutions to this problem but it's definitely the most discouraging thing I deal with. I'm really grateful for the ongoing support of my friends and loved ones who do what they can. I'm especially thankful for my boyfriend, who has changed his habits to accommodate my disorder, and who has gotten me more used to the idea of accepting help from others. Thank you for pushing me to maintain a positive outlook and not give up. I won't.


Kaitlyn

Trigger Sounds

     Any sound can potentially be a trigger sound for someone with Misophonia. I started out with just one trigger and over the years, have gained more at a seemingly accelerating rate. I'm trying to make sure that my ways of coping can keep up with the rate of new triggers but this is a daily struggle! Here is a list of my current trigger sounds, in the order they appeared, and how severe they are for me. While everyone with this disorder has their own triggers, the feelings and responses to them are often similar.

   Paper

  Around age 13 is when I first remember being bothered by certain sounds that didn't bother anyone else. My first trigger sound was anything to do with paper being touched. Pages turning, paper being rubbed together, being folded or creased - these sounds made me feel involuntarily enraged and physically uncomfortable. All through my academic career, this has made being confined to a classroom difficult.

     By the time I was in college, I would often excuse myself to the bathroom just to avoid the stress of anticipating the next trigger. When I was in a room full of people, all reading a book, the last thing I could focus on was the material. I was (and am) hyper-vigilant, because my reactions are even worse when the sound is unexpected and I don't have time to mentally prepare. I often found myself trying to look like I was doing what I was supposed to do, but also trying to cover my ears without anyone noticing, knowing someone must be noticing, and feeling like a freak. 

Snapping and Clapping

     The next trigger sound to appear was loud snapping and clapping. I don't think this started to bother me until after highschool. Applause is fine, but a single person clapping or snapping, or even one extra loud clapper that cuts through the applause is very hard for me to deal with. It's not my worst trigger by far (I'm able to mentally move on a little faster than I am with some others) but this may be because it's not something that I have to deal with most days.

Fingernail Biting or Picking

     This is a fairly recent trigger (last 3 years or so). My reaction to this sound is not all that severe. It is enough to cause me to leave the room, even if I am watching a movie I'm invested in. Hearing someone pick with their fingernails or bite their nails feels very jolting and instantly draws my attention away from whatever I'm doing. It's very hard to maintain focus on an activity or task when this is going on, so I usually give up or leave the situation. 

Door Slamming and Closing

     Door slamming is one of my most severe triggers. It only came to be one in the last calendar year, but my negative response to it is the strongest of any sound. When a sound becomes repeated, this is usually when it starts to become a trigger for me. I spent about 8 months living in my parent's house this past year and their house is older. The doors all slam, without anyone intending to slam them. I can't bear this sound and will try to wake before anyone else and play loud music through my headphones. Recently, just the sound of a door closing has this effect, unless it is done very softly. 

Repeated Tapping

     This sound became a trigger in just the past few months/weeks, so I am actually still figuring out what all falls into this category. Mostly it is the repeated tapping of a spoon or spatula on the edge of a bowl/pot etc. to get the excess food off. One tap is fine, but hearing two or more, especially repeatedly, sends me into a rage inside. I have to get away from this sound. I have taken to leaving the house or building whenever people are cooking. So far, the sounds with cooking cause the most severe reaction, but I have noticed a reaction to a mouse double clicking, someone knocking on a door, and tapping a toothbrush on the sink to get the water off. 

Other Common Triggers

     Those listed above are most of my triggers as of April 2016. But they are not the trigger sounds that most people with Misophonia experience. The most common triggers for sufferers are: mouth sounds like loud breathing, chewing of food, crunching, slurping, smacking etc. rustling of wrappers, keyboard tapping and pen clicking, silverware scraping, gum chewing and snoring.

    As you can see, eating a meal with a group of people is often extremely stressful for someone with Misophonia. I don't yet respond to most of those sounds, thankfully. However, sounds can become a new trigger at any point. Many sufferers resort to isolation as their only option. If you ever come across someone who tells you they have Misophonia, or need quiet to focus on what they are doing, please have grace and understanding.

    Also, please know that I don't blame anyone for making these sounds! They are for the most part normal, expected sounds. I simply can't control my mind/body's reaction to these noises and sometimes I have to protect myself by avoiding certain situations. No one with Misophonia wants to get up and leave the family gathering, stop watching the movie they were enjoying, or eat the dinner their spouse prepared alone in their room. We must avoid our triggers, or suffer. The guilt that comes with this is immense so please understand that we don't mean to offend anyone by avoiding our trigger noises. I hope this post offered some insight into the everyday difficulties of someone with Misophonia.

Kaitlyn

I Have Misophonia.

 

  (Okay, so...first post! I have that urge to just spew out my entire life's story in one go, but I'll resist. I think I'll just go over the purpose of this blog, what I plan to talk about, etc. so here goes!)

     I have Misophonia. It's a disorder in which certain "trigger" sounds that would be normal to most people are intolerable. I'm not talking about pet peeve level intolerance. It's a visceral, fight-or-flight type of response. There are different degrees of severity, but it ranges from a feeling of anger and an urge to get away, to physical responses, mimicking of the trigger sounds and more. If you've never heard of it, I encourage you to do your own research as there is a lot of info out there that I don't want to just plop down in this post.
      I've had this disorder since middle school, so that's 10 plus years living with this. It has made school very difficult to get through, as my first trigger sounds, which I still have, were any sounds related to paper. Turning pages, creasing and folding, and rubbing paper- to me these sounds are like nails on a chalkboard. Just typing this, my body physically responds and the hairs on my arms stand on end.

     When I started college, things started to get even more difficult. I started to realize that this disorder isn't going to go away- that this is my life. My first reaction has been to reject this notion, and then a lot of anger. I have heard it said that accepting this disorder is essentially a grieving process. It's like the expectations I had for the life I could have without the disorder are dying and I don't want to let them go.

     Even in the recent past I have felt utterly hopeless. But I am trying to achieve a better outlook and take charge of my life- I'm trying to create a lifestyle for myself where I can more easily manage the symptoms of Misophonia. Some days are great, and some are frustrating and full of tears. I'm not there yet, or even close. But I have hope that even if this isn't the life I want, or would ever have chosen, it can still be a great life. I'm creating this blog to share my progress, spread awareness, and talk about any solutions or things that effect my life and symptoms - the good and the bad!

Thanks for reading and I hope you stick around.

Kaitlyn