Medical field: get with the program on misophonia

I recently went to my primary care doctor to get a referral to a cognitive behavioral therapist. We did the usual listen to my heart thing, blood pressure and temperature checks, etc. Then I got to the uncomfortable part of telling her that I need her to refer me to a therapist.

I’ve been to therapy before. Depression. Anxiety. Stuff like that. She asked me all about those and ruled out that I did not have depression at the moment, but I do have generalized anxiety. Then I started: “I, uh, also have this thing. This thing where I get really freaked out when I hear certain sounds. Like, I panic. It’s called misophonia?”

Blank stare. The chirping of crickets.

Me again: “It’s a real thing. There’s been a lot of news about it lately. And I know I’ve had it for years…”

At this point, my mind is racing and flooding with self doubt. I see through my doctor’s puzzled look that she is trying to decide whether I’m some sort of hypochondriac who thinks I have every disorder under the sun.  The doctor asks a question: So, really loud noises hurt your ears?

No, it’s soft sounds, like the sound of people eating and chewing.

At this stage in the appointment, I think she just gives up and tells me how to get in touch with the therapist. She also tells me a bunch of stuff about anxiety that I already know.

My doctor belongs to a reputable health care network, and the company is really great about giving me printouts each time I go to the doctor. For example, the printed out information I got about anxiety went on for a couple of pages. A definition of anxiety, the symptoms and the  many ways to deal with it.

Misophonia must not exist in their system. I’m not surprised, because the condition is not well known, but that didn’t make the situation any less frustrating. Once I saw press coverage on misophonia, I got my hopes up. I wanted information about this to explode overnight. It’s been in the news — can’t all doctors know about it already? I know, I know. I’m being completely unrealistic.

Change is slow, and it takes the commitment of many people. So, I think I’ll try to do my part and write a letter to my health care provider to see if they will consider researching misophonia and providing information about it to everyone who works for them.

I’m curious if anyone reading this has had a good experience talking about misophonia with a health care professional? Did I just get a dud of a doctor? Are others in the know? How have you approached talking to your doctor or therapist about misophonia, and how were you received?

I have my therapy appointment soon, and I’ll probably have to get my therapist in touch with the misophonia specialist I saw earlier, just to make sure we’re all on the same page. Once again, I’ll keep you posted…

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21 responses

  1. I could cut and paste your post and paste it as my own with my very own experiences today…except its in school and not work. So fustrated right now as I know if I go to HR they are going to think I’m crazy. I’m for sure not going right now as the steam is still venting from my ears from my encounter.

  2. Without going into detail, my life is deeply affected by this. Is there any way of being referred to a medical professional on the NHS that may be able to make life more bearable? Failing that are there any private specialists in the UK that have experience with Misophonia? I find the lack of help available for people like myself incredibly worrying and have been laughed at because of this by several people, including medical professionals. I need to find some kind of coping mechanisms because spending the rest of my life like this is simply NOT an option.

  3. Where can I find a misophonia specialist? I want murder my boss every time she eats because of the noise she makes. Please help

  4. I asked my doctor, with whom I have a good relationship, for a diagnosis to help me in the workplace. She validated my problem but said there is no diagnosis code for misophonia. My employer is changing our work environment from private offices to shared. I’d like to be able to increase my work at home time. Without a diagnosis code, I don’t think I can get employer accommodation. Has anyone received a formal diagnosis or employer accommodation?

    1. I attended the 1st Annual Misophonia Association Conference in Portland, Oregon, hosted by audiologist Marsha Johnson. She related that she had used code 388.42 successfully because it is most closely matched to hypercussis as far as a diagnosis. There is more information from another attendee at http://www.hyperacusis.org/page9.html

  5. Chips or any crunchy food…slurping liquid…open mouth chewing…chewing/snapping gum…
    When I was in full labor having my daughter (she’s now 10) my mom was holding my hand, right near my left ear, and I remember asking her very slowly and politely to stop chewing her gum. My husband told me that is the longest sentence I said the whole time and that is one of probably only three moments of that whole labor (before they wheeled me to emergency c-section after pushing for three+ hours) that I can remember.

  6. Kelly Collins | Reply

    I understand how you feel. I hate seeing counselors or psychologists or psychatrists because I always get the same reaction – a blank stare when I tell them about my noise issues. My parents and I literally cried when we first heard about misophonia, because now we know why I acted in anger when I hear chewing noises, loud breathing, gum popping, etc. It’s been so difficult – I’ve dealt with depression since I was 13, all relating back to how my noise aversion affected my relationships with my family and friends. Now I’ve been married for 1 year, and my husband is just beginning to see the implications my disorder will have on the rest of our marriage. I’m also a teacher-currently looking to transition from educating-and I’m scared to pursue other careers because of the misophonia. I avoid difficult situations, and in college wore ear plugs during every class, but I don’t see how I will be able to accomplish that in an office setting. Please let me know if you hear more about misophonia in the news, I’m anxious to get the word out as well!

    1. Thank you for sharing your story with me. If you check out some of my older blog posts, there is a link to a New York Times story about misophonia and a video from Good Morning America, which did a segment on misophonia.

  7. this is amazing that there are other people who feel the same way i do. I also watched the 20/20 episode on this and found myself in tears because this is exactly what my life has been like now for about 10 years. The worst part about it is that others around you don’t understand and I have pushed so many people away from me because of this. People will mock me and purposely make noises because they think it is funny. It kills me but I often find myself yelling at my loved ones and boyfriend because i can’t find any other way to let out the pent up frustration of the noises. If anyone has heard of anyone that works with Misophonia in the Massachusetts area please let me know because I would love to get involved in some sort of research program.

    1. I am so sorry to hear that people use your condition to mock you. Deep down that is one of my fears and a reason why I try to keep my misophonia a secret from most people. I’m worried it would be used against me in a joking way or maybe even in a malicious way. I haven’t heard of a specialist in Massachusetts, but I do have a blog post about this site: http://www.misophonia-provider.com/

      You could try looking there. Or you might want to take the approach I’m trying, which is to find a good every-day therapist and try to educate the therapist about misophonia and cope with it through cognitive behavioral therapy. Good luck!

  8. I have the same issues…Gum chewing drives me mad, among many other sounds. Today, I was called into my bosses office so he can tell me im “not allowed to tell people they cant chew gum.” I never did, but I have voiced it (politely) to my coworkers (whom actually care about me so they have calmed their chewing down). However, my boss (whom has a brother suffering from misophonia), doesnt want to listen to my explanation. He thinks I am trying to cause trouble with others in the office and that I am making more of it than it really is. I almost came to tears while trying to explain the physical pain i feel when I hear him crack his gum…or the amount of control it takes for me to keep my anger hidden on the inside. I turn red. If I were a cartoon character, you’d see smoke coming out of my ears. He continues to shun me, accusing me of just being a problem. I went to my Human Resources Manager, instead. I printed out a website “diagnosis” of misophonia and made her read it. I told her I am not a problem and I cannot control my reactions to these noises. As much as she said she would like to help me (and gave me information about therapy), I could see it in her eyes that she thought I was telling her a load of crap. It hurts that the people I interact with on a daily basis dont believe what I am telling them. I have never been a liar, or a story teller…I have never caused problems or fights…now all of a sudden this defines me.

    1. Wow. First of all, I think it is so brave of you to bring this up with your Human Resources department. I’ve been wanting to do that for a while at my job. Second, they really should have to accommodate you. I think as more awareness is created, hopefully, workplaces will become more accommodating. Are you able to wear ear plugs at work when a coworker is chewing gum? That is what I’ve been doing lately. I also wonder if they could place you in a section of the office that is farther away from coworkers? Hang in there! There may not be a cure, but at least there are coping strategies, and hopefully with more awareness, there will be more workplace accommodations for us.

      1. I appreciate your support immensely! Unfortunately, they don’t let me listen to music, wear ear plugs, read a book, draw…they don’t feel as if they HAVE to accommodate me. It’s horrible. I try to occupy my mind in any way possible and it seems each time I try something different, they make a new rule that we aren’t allowed to do that specific thing. My boss is the one that saw the 20/20 commercial about Misophonia, so I am really hoping he comes around soon! I’ve dealt with this for 16 years, so what’s another few, right? I will be patient, but I may have to bring my Ipod with me everywhere.

    2. I suspect that if you could get an official diagnosis, your employer and HR would have to accept it and try to make reasonable accomodations. Would suggest you try finding an oto-neurologist (special type of neurologist) or at least a neurotologist (special type of ENT) or audiologist familar with this condition. As misophonia gains more publicity, it will become more apparent that it is a form of disability (reasonable accomodations are made for those with more well-known conditions such as difficulty hearing, blindness, etc.) – ignoring or refusing to accomodate would violate the Americans with Disabilities Act (ADA) for those in the U.S. Hopefully other countries have similar laws to prevent this type of discrimination. Your boss sounds like a major D-bag. Good luck.

      1. Thanks so much for all of the information! I really appreciate it. I will search for one in my area and hope they know what I’m talking about. As far as the boss goes, yeah, he can be. He thinks he’s being funny, but I’m not laughing. Thanks for the support!

    3. Sound-Rage. A Primer of the Neurobiology and Psychology of a Little Known Anger Disorder (Chalcedony Press, 210 pgs, from Amazon) provides compelling evidence that “misophonia” is a developmental, neurological disorder

  9. I have misophonia and the soft noises like eating and breathing drives me crazy. It’s so bad that I can gaurentee that my family will purchase the white noise maker. Yeah it’s that bad. Misophonia sucks.

    1. I watched 20/20 last night. It was about Misophonia! There was a guy on there that had his friend trigger him on purpose to see what his reaction would be. I found myself in tears because I act the same way when triggered. His face turned red, he almost came to tears, he had to walk out of the room within minutes! I am sincerely praying research is done and there is a cure found SOON! I don’t want to have to live with this forever!

  10. I have Misophonia and finding doctors who have ever heard of it has not happened for me as of yet. Heck, I have Asperger’s Syndrome and the doctors have a hard time figuring out what that means… and that’s really in the media. Good grief. Some of them go as far as to question that I actually have it. I get the “You look so normal.” crap. What? Pardon me? I’m supposed to have a certain “look” now? There’s a lot of ignorance out there.

  11. I so totally agree with all of the comments. For me it is chewing gum, smacking lips, chewing with mouth open, etc.etc. Drives me crazy.

  12. Good phrase there – but I know we (misophonics, HSPs, the psychologically vulnerable, etc) are most definitely NOT on ‘the same page’ as yer avarage GP, therapist, or most of the rest of the world. We are many pages back – (or should one really say forward….) – of this great duddy non-sensitive great-happily-unaware one-mind hoi-polloi. My own GP ‘doesn’t know anything about it [misophonia]’, so that rather puts that in the can! (I don’t know if that’s becasue this is England and that America is a bit more advanced on the subject).

    Yeah, all one gets is ‘a bunch of stuff’ that one knows about already – we misophonics, HSPs etc know it all too yawningly and painfully much!

    Yeah, people comment or might ask things like: “Oh, you don’t like loud noises”, or something of that ilk.

    How in heck does one start on the long and weary road to explaining that it’s NOT loud noises. It’s SOUNDS. CERTAIN sounds. No, NOT loud sounds….. (With me it’s certain Impact-type sounds that are my triggers, so again I’m different even from the ‘normal misophonic’). When one’s stressed-out by depression as well, one – not very admirably – tends to suddenly just feel too tired to take another step.

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