My Misophonia List - The Good,The Bad,The Ugly

Let's get the bad & ugly out of the way first:

Things that piss me off:
  • I don't know how to answer when someone asks if we have a diagnosis. This is a trick question. Misophonia is not a recognized neurological disorder by the medical community and therefore we can not get an official diagnosis.
  • I get frustrated with well-meant advice from friends and family who just don't understand what we are going through. I am so tired of sentences that start with: "Just tell him...."   My son is not currently able to be reasoned with.  A conversation with my son is like walking through a minefield. He immediately ends our discussion and shuts down if I try to bring up his Misophonia and anything related to treatment. I can not sit him down and explain things he does not want to hear. And right now he is in denial.
  •  The unpredictability of our life. Can our son make the drive to and from school, piano lessons, the YMCA, and other frequent destinations? Can we get him out of the house to do laundry, dishes, run the air conditioner and hot water heater? What will be the next trigger?
  • I hate that we spent a weekend tearing apart the upstairs loft to create a private oasis only to find that the room won't work. We found that the curtains that I spent a small fortune on are another trigger when moved and sway.
  • I also hate that when I think I found something that will help such as Neurofeedback, I keep getting shut-down by my son. He is smart and stubborn and scared and in denial. He can not be cajoled or bribed into doing anything he is dead-set against.
  • I hate not knowing from one moment to the next how my son is feeling toward me. I never know until I see his eyes or his response through a closed door. I hate that more often than not, he does not want to talk to me or see my face. I hate that it's been days since my last hug.

The Ugly:
  • The things my son is saying to us are getting uglier and more profane. A parent never wants to be told to "crawl in a hole and die", or endure "I hate you", "You bitch",  "#@%*!"or hear that their child wants to stab them.
  • The faces my child makes when raging gives him a look of being possessed, like Linda Blair in the Exorcist. His glowering eyes and gnashing teeth are comically horrific. I wait for his head to spin and spit out green pea soup. I don't know whether to laugh or cry. Until I realize this is not a joke. This is real. I want to cry but don't let myself.
  • I am disturbed by the fact my son has turned the 1st floor half-bath into his bedroom and sleeps on the floor. 
  • Misophonia is creating strife in our family and destroying my son's relationship with his brothers. It also causes extra stress for everyone.
  The Good:
  • There are several Misophonia-related support groups that bring together folks from all over the world. The group members are kind and smart. They will share resources and have your back. They will be your new extended family that will offer advice and not judge you. They understand. And when it comes to Misophonia, they know more than the doctors.
  • In these groups, I have found useful information that has helped point us in the right direction for treatment. I believe that thanks to these support groups, we will find a cure.
  • I have made many new friends that share the same passion for helping put an end to the suffering that Misophonia has brought into our lives. We are kindred spirits.
  • I have been finally taking off those extra pounds that have crept on after I turned 40. It's called the Stress Diet!
  • I've never been a brilliant housekeeper and I now have a great excuse for avoiding chores.

4 comments:

  1. "Do you have a diagnosis?" Trick question indeed! Well yes, she's seen the authority on misophonia, who is an audiologist. "No, do you have a diagnosis from a medical practitioner?" Well actually I have to educate the medical practitioners, who've never heard of it. If they're open minded they accept what I say and their referrals say she has misophonia. Does that count as a diagnosis?

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    1. Hi Maria, I think that is a trick comment! :) What I am looking for is an official medically and insurance company recognized diagnosis so that we can get proper treatment of this disorder. Currently we have to trick the system and get a diagnosis of Anxiety for a prescription for Neurofeedback treatments. We are in the same boat as you. We have the same type of (unofficial) diagnosis. We all need to fight to make this "OFFICIAL"!

      Stay strong and keep up the good fight!

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    2. Hi Bad Momma, Not meant to be a trick comment! I just so felt I had to comment because of my own recent experiences. It's like an accusation - do you have a diagnosis? (from the skeptics). It's not a simple question to answer when you have to educate the person who's going to give you the diagnosis. Good on you! I've just started my own miso blog.

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  2. :) Thanks! I'll be following you!

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