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The "Butterfly's Whisper" Blog

Welcome to my blog. I hope by sharing my own misophonia experiences, others who are frustrated with misophonia sensitivities will discover that they're not alone. I also hope that people who may not have misophonia will gain some insight about what it's like to have this condition.

Please feel free to post any comments or use the "Contact Us" page if you have any questions/comments you don't want to post online.

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Deep thoughts about my misophonia

4/14/2013

2 Comments

 
Ever since I discovered I had misophonia, I've been doing a lot of thinking about my life. I've reconnected with people with whom I haven't touched base in years. I've dusted off experiences that had become faded memories, trying to understand if and how my misophonia might have contributed to them. I've even had many cerebral conversations with my folks about my past, seeing the red flags through the eyes of "Monday morning quarterbacks," wondering how things may have been different if we really knew what was going on - not to mention trying to figure out how it's playing in my present life. I've never been much into theoretical thinking, (give me tangible math equations over theoretical any day), but lately my mind has wandered to ideas just for the sake of pondering them - even if I don't come up with any definitive answers. This weekend has been no exception.

It started with the idea, "Is ignorance bliss?" I thought to myself, "Even though I've had misophonia for decades, am I better off now that I know what it is, or was I better before I knew?" That might sound like a stupid question, because ever since I found out I had misophonia, I finally feel like I'm not alone/crazy with my frustrations about certain sounds. The reason why I thought about the question was because before I found out why I was annoyed at whistling, eating noises, etc., I just thought I had sensitive ears. (Small problem.) Now that I know about misophonia, I associate all my visual, tactile, smell and taste annoyances to the condition too and I'm hyper-aware of my environment as a whole. (Bigger problem.) Has the knowledge about misophonia actually added to my stresses?

Which brought me to my next thought... Every now and then I think about what the doctor at the Mayo Clinic said when I went to see if they could help me address my misophonia. That it's a conditional/situational issue, not neurologic, and how he referred me to their mental health group. (I did try to see if there was anyone knowledgeable about the condition in their audiology department before I headed home, but was told there wasn't.) I've had several other doctors since then push the mental health/occupational therapy route as well, which got me thinking about the "Which came first? The chicken or the egg?" question... How many times have I read or heard comments about a person's misophonia being aggravated by stress/anxiety/depression/etc. but what about the possibility that a person's misophonia is what caused the stress/anxiety/depression/etc. in the first place? Which came first? The body/mind's stress towards triggers or triggers being created by stress on the body/mind? (I'm more of the belief that the triggers came first.)

The reason why I believe doctors lean towards the latter option with me has to do with my family history. As much as I believe whole-heartedly about providing a doctor as much information as possible about my (and my family's) history to help solve the puzzle about this condition, I've come to the realization that in my case, sometimes being so forthcoming about my family history automatically creates biases that prevent doctors from even remotely considering a physiological cause of misophonia for me. I've hesitated sharing my background here in this forum for a long time but given the second "deep thought" above, I feel like sharing may be a good thing, because it shows how some misophonia sufferers like myself have other hurdles to jump when seeking help from a medical doctor.

To make a long story short: When I was eleven, my father died of a heart attack and my mother committed suicide less than a year later. As soon as doctors hear "suicide" though, they've subconsciously rubber stamped "SUICIDE VICTIM" on my forehead and become biased that my misophonia is a direct result of these tragedies. That I must have some mental issues like my mother did... Never mind the fact that some of my triggers began before either of them passed away. They don't consider the fact that my father's sister and her family took me into their home and showered me with love, support, and encouragement from day one. That I really wasn't close with my mother, so she hardly influenced who I  am today. (Heck, my aunt has been a greater influence on my life than my mother ever was.) That I am a true renaissance woman who is a unique combination of techie (computers and other sciences) and creative (sculpture, music, writing, theatrical). That I excelled in school: graduating Cum Laude from Mt. Holyoke College, as well as receiving masters degrees from UPenn and Harvard (I was top of my class in Harvard). That I became a leader in my industry, and even have worldwide notoriety from my professional writings and conference presentations. Haven't doctors ever heard of people getting stronger after major tragedies instead of weaker? Don't doctors realize that there are thousands of misophonia sufferers in the world that never had to deal with the kind of tragedies that I did?

For the most part, I don't tell people about my background because those tragic events are not the focus of who I am today. The last thing I want people to do is to change their demeanor towards me because of the stigma of something my mother did, not me. As far as people are concerned (particularly my coworkers and general acquaintances), my aunt and uncle are my parents and my cousins are my brother and sister. That's the only way that people can understand the true nature of our family dynamic.

It makes me have one more deep thought about my misophonia: Is it better to give full disclosure about a person's FAMILY history when seeking treatment for misophonia or is it sometimes better to  provide that information on a "need to know" basis to prevent a snap judgment which may cloud the issue?

I may ponder the above questions for years to come...
2 Comments
Mick Jones link
4/15/2013 03:05:55 am

Hi Em,

A couple of months back I was wondering how things were going with you so I checked your Facebook page. That's where I found out about your website and blog.

While looking around your site I came across a link to the Misophonia Support page and went there. I was touched by some of the stories and also saddened when I realized how I'd very likely troubled you and aggravated your Misophonia many times when we were together.

I was moved to leave a posting to share my feelings and regret that I'd been insensitive to a friend in need. So many of the stories I read
told of friends and family that were not only unsympathetic, but openly hostile and abusive to those suffering with your condition. I related how my friend through her website and with the help of an understanding employer was finding ways to cope with Misophonia.

I didn't think it right to post a link to your site or mention your name. I just wanted to pass along to those folks that there are ways to cope and that non-sufferers can be understanding and sympathetic.

I made that posting under the name rmorgan because I wanted to be anonymous to the forum. Why? I'm not completely sure, but I also wanted to leave a name that should you have run across the posting might know it was me and that I am sorry about those times when I was not understanding of what you were trying to tell me.

Things would have been fine I think if I'd left it at that, but after reading more about Misophonia and how it is sometimes related to Tinnitus I foolishly responded to your posting about your earbuds and probably frightened you when you realized who Richard Morgan really was.

I am sorry about that. But Emlyn I felt so strongly that I should encourage you to share your story, not just through your site but by reaching out to as many outlets as possible, beginning with the Misophonia Support page, I let my emotions get in the way of good sense and acted stupidly.

Please forgive that and allow me to say that you are wonderful and brilliant and as many people as possible need to be inspired by your story. I know in the bottom of my heart Emlyn that they can and will be inspired. Don't let the actions of one crazy fool stop you from being a marvelous role model for so many who are without hope and suffering.

We spoke many times about finding bliss. I feel very strongly that your struggle with and eventual triumph over Misophonia is quite likely the manifestation of your "bliss"

Sincerely,

Mick

Reply
Jim
4/17/2013 04:10:12 pm

I am sorry to hear about your parents. That's a lot to bear, and it could send anyone either to become more self-reliant or less self-reliant. But it sounds like you are quite resilient. Harvard turned me down, by the way, so you've conquered far more than I have (though we share the international notoriety for accomplishments in our respective professions - funny that we both choose that word: notoriety).

I am frustrated, too, with those who focus on events in childhood.I don't want to dismiss environmental content entirely, but it seems like such an odd response to develop triggers that are so connected to those we love most.

I had, by all accounts, a very happy childhood. I was lucky to have two loving and competent parents, each with strengths and weaknesses. They let us explore the world, but provided structure, love and support. My sister does not have this disorder, but I do. I believe my mother had it, but had trouble understanding what was going on. People said she was "agorophobic" and, like me, she sometimes avoided contact with people to remain in her comfort zone. I think her triggers were more visual than mine. Fidgeting was a serious problem for her, and my sister and I accepted that. She expected quiet in the house. No abuse. No anger. It's just how we grew up.

I think there's a strong genetic component to this disorder. And, now that I understand more about it, I realize what produces that rage response that we need to suppress to function properly in our professional and personal lives. Those hormones signaled by the amygdala course through us and we should be startled, we should run, but since the more mature parts of our brains so clearly tell us it's all OK, all those hormones do is affect our mood and wear us the heck out. I think it's very much a physical disorder that has an emotional component.

So, we can work with psychologists to learn to better handle the rage, and CBT therapy can be valuable - even hypnosis, though I think the disorder probably makes it difficult to submit to hypnosis. Or we can work with psychiatrists to find drugs that suppress the fight-or-flight. I have no time for people - even Mayo-level people - who dismiss this without digging into why we react the way we do. We're not cartoons, we're people just like everyone else. We're just as anxious to please and to fit in.

Anyway, just my thoughts...

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    About the Author

    Emlyn Altman has been suffering with misophonia for over 40 years, even though she only found out about the actual medical condition much more recently. As frustrating as the condition has been over the years, her heightened sensitivities across all the senses considerably influenced her talents within the visual fine arts (particularly sculpture), music (singing, piano, and many other instruments), writing, and culinary backgrounds, as well as professional achievements as an architectural lighting designer. Her goal in developing this website is to promote more awareness about misophonia and help other sufferers as well.


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