What Misophonia Has Been Teaching Us

Last year I was noticing a change in my then 15 year old daughter that was concerning me. She had always been  affectionate, pretty open with me about her thoughts, and generally a cheerful young lady. I began to notice she was less affectionate, she seemed so sad, and that she was hiding away in her room more and more. I was a bit confused by this as we have been working on our family relationships and she was so happy and eager about that.  I could not understand why it felt like she was going backwards.   

One day she came to me, with tears in her eyes and told me that she just needs to be away from me - that I make sounds that drive her crazy, that make her feel like punching the wall. She felt so bad and she felt like she was a bad person for having these feelings.  My daughter was in distress. It broke my heart, I didn't quite know what to do, and I was confused. Wanting to understand, I asked her questions that came to mind and I tried to understand but it was so hard to understand. I tried to process all that she was telling me, my flesh wanted to make it about me, my flesh wanted to think she was choosing this - that she could just choose to think and react differently if she wanted to bad enough… I was in a battle of fighting off discouragement and choosing to trust the Lord. 

One day during a TV show that she enjoys watching, I observed her physically struggling to watch.  I noticed she was experiencing a physical distress as a result of the sounds her brother was making while drinking a fruit smoothie - something they enjoyed doing together.  This physical distress was noticeably increasing within her. As I watched my daughter struggle, the expressions on her face revealed that what she was experiencing was like torture to her.  She suddenly jumped up and ran out of the room unable to stand the sounds anymore or finish watching the show. I went to her and I talked to her, we talked through what happened as best as we could.  I was more convinced that there was more to this than her needing to make a choice to respond, there was something real going on in her.  She was in a great deal of distress, not wanting to hurt her family, and yet feeling so exasperated, fighting off a physical feeling of rage. I felt led to research what she was going through and surprisingly, I quickly found the answer, I discovered there are so many who suffer with this affliction called Misophonia. 

Misophonia is a disorder where a person has an aversive response to a sensation within a context or setting.  With Misophonia, a physical reflex is triggered which makes it impossible to not notice the stimulus. The emotional response is overwhelming and accompanied by strong physical responses such as tight muscles and fight-or-flight responses. 

I joined several FB groups of people who suffer with this and I read as much as I could to understand it. I began to understand that it is usually the person who they are closest to that is their biggest trigger. I am that person in my daughter's life.  I began to see what other people experienced and I began to learn what questions to ask my daughter so I could understand her more.  

That all was SO GOOD, however, within just a day or so I felt dejected from the many comments that people who suffer with Misophonia were posting, the comments revealed people who are tortured by sounds that I, rarely - if ever, notice. I noticed that these people’s hearts were full of anger at the world for making these noises. The way they were handling their situation, the way they were ranting against people who unknowingly make sounds, or who don't understand Misophonia, left me with a feeling of hopelessness for my daughter and for our relationship.  

As I was processing this and feeling myself being drawn deeper toward this hopelessness, the Lord who graciously never leaves my side helped me to see what was happening within me.  He reminded me that the answer is "ALWAYS LOVE" no matter the circumstances.  Yes, love is always the answer to our life challenges. There is nothing that Christ's kind of love can’t help - there is nothing too big for Him. And the Lord gave me the answer of how to move forward with my daughter. Just like I have been learning to do in general, I need to walk in kindness, always being tenderhearted and forgiving, that I need to increase in understanding and compassion for her.  I need to teach her how to live, how to love like Christ loves with her new affliction and how to develop understanding and compassion for those whose sounds affect her and for those who are unable to understand her. I am grateful that she receives my increasing love and understanding toward her and that she is willing to cooperate in learning to love in her difficult circumstances. 

As part of understanding our daughter we are learning to make certain allowances. My husband asked my daughter to participate in a volunteer event and she was very anxious about it because when she went last year there was a person there that triggered her quite badly and she didn't have a place to retreat to, to calm herself. She was also concerned that her dad would not understand. I discussed this with my husband, helping him in the areas he didn't understand about her condition and he went to her and lovingly released her from it. The next thing I knew she came to me with lots of hugs and snuggles, feeling completely understood and loved. 

I am seeing my daughter resurface with being more affectionate and open. When I commented about it to her and asked her what is going on inside of her, she said that she feels understood and that helps her so much, that it helps her to feel like she can come out and be with us more. She and I have been working on our communication about what she is experiencing and developing some tricks to help her cope. I am so grateful that the Lord has answers to everything and that His answers always include His kind of love.

As we have moved forward in this journey talking about it, we have discovered that one of our other daughters also has a physical reflex to trigger sounds as well, and we have also have begun to learn that my husband also has similar responses to certain things.  We are all growing in understanding of each other and validating each other.  We are all learning together about this condition and each other.  We are "in the journey" and there are days that are harder than others and we are working through each day at a time.  

This is something my daughter wrote to me for Mother's Day

The Lord has shown me so much about myself through this. He is truly using this circumstance to go deeper into my heart and work out the muck, to show me more areas I need to surrender and is walking me through more steps of learning to trust Him, to give it all to Him. He continues to teach me to love unconditionally without expectation.  It isn't always easy, but His ways are always simple and His answer is always love. 

The Lord has been gracious and has given me a glimpse of what this situation would have looked like, what my attitude and response would have been like, if my heart was still in the condition it was just a few years ago.  For the sake of my family, I am so glad that He didn't leave me in that condition, I am grateful that He is the one who prepares us for what is ahead. With His love in us, there is a way through every challenge that comes our way. I am so grateful because that  is how He is with all of us. 

Then You Can Keep Christmas

PC: Sereina

"Are you willing 

    to forget what you have done for other people,
          and to remember what other people have done for you;

     to ignore what the world owes you,
           and to think what you owe the world;

     to put your rights in the background,
     and your duties in the middle distance,
     and your chances to do a little more than your duty in the foreground;

     to see that your fellow human beings are just as real as you are,
     and try to look behind their faces to their hearts, hungry for joy;

     to own that probably the only good reason for your existence is not what you are going
     to get out of life,
          but what you are going to give to life;

     to close your book of complaints against the management of the universe,
     and look around you for a place where you can sow seeds of happiness —

are you willing to do these things even for a day?

Then you can keep Christmas.

Are you willing 

     to stoop down and consider the needs and the desires of little children;

     to remember the weaknesses and loneliness of people who are growing old;

     to stop asking how much your friends love you,
          and to ask yourself whether you love them enough;

     to bear in mind the things that other people have to bear in their hearts;

     to try to understand what those who live in the same house with you really want,
          without waiting for them to tell you;

     to trim your lamp
          so that it will give more light and less smoke,

     and to carry it in front so that your shadow will fall behind you;

     to make a grave for your ugly thoughts,
          and a garden for your kindly feelings, with the gate open —

are you willing to do these things even for a day? 

Then you can keep Christmas.

Are you willing 

to believe that love is the strongest thing in the world —

     stronger than hate,
     stronger than evil,
     stronger than death —

     and that the blessed life which began in Bethlehem nineteen hundred years ago
     is the image and brightness of Eternal Love?

Then you can keep Christmas. 

And if you can keep it for a day, why not always? But you can never keep it alone."

– Henry Van Dyke (1852–1933)