Misophonia comes from the Greek and literally means ‘hatred of sound’. People with Misophonia have extreme feelings of anger and disgust when hearing certain repetitive sounds. This often involves mouth and throat sounds such as smacking, swallowing, heavy breathing and coughing. But aversion to repetitive sounds such as nose picking, whistling, humming, tapping a keyboard also occur.
How it works exactly and why someone suffers from it is not yet known because misophonia is a relatively new diagnosis. We do know that it is a neurological (psychiatric) condition that usually occurs at the beginning of puberty and that it is the result of an incorrect link in the brain between certain sounds and negative feelings. About half percent of the population suffers from it, but the group is growing. Anneke’s daughter Lola was diagnosed with misophonia at age 15.
Anneke: “It started when she was around the age of 12. At the table she increasingly told us to stop smacking and if we had cake or pie, she usually walked away. At first I thought it was an eating disorder, but she didnt seem to have trouble eating herself. My husband, Lola’s stepfather, was like a red flag. Lola would get extremely irritated by him and accuse him of ‘eating like a pig’. Not a meal went by without an argument. She usually left the table before dessert. I now know that desserts are a huge trigger for Lola. The sound of the spoon against the bowl followed by the slurping of mouths is unbearable for her…
Lola is obsessed with eating sounds. When she sees someone eating on television, she leaves the room. Even if there is no sound. Just the thought of the eating sound is enough to trigger feelings of extreme disgust, anger and disgust. When we have a birthday planned or go on holiday with friends, Lola can’t sleep for weeks in advance because she worries about eating together. In recent years I watched Lola struggle with fears and obsessions. I felt so powerless, it was a terrible time for all of us
Lola was always special, very sensitive and withdrawn. As a baby she cried a lot and slept poorly. As a toddler she was different from the other children. For example, she never wanted to play in the sandbox because she thought it was dirty. And she preferred to sit alone at school, because she thought the children were too noisy. She did have friends, but she played just as happily alone. There was no irritation from noise at that time. As a child she would eat at the table and enjoy it! The misophonia developed later on. Now that I know more about it, I can see it was combination of several factors.
First of all, that sensitivity. Lola is easily overstimulated and because the focus went to eating sounds, that has become her ‘thing’, that which expresses her hypersensitivity. The obsessiveness was always there. Even at primary school, Lola would get deeply involved in certain themes or subjects. Whether it was something she wanted (I want a dog, I want a dog, I want a dog…) or something that had to be done in a certain way such as the bedtime ritual. That was very strict: first pee, then brush teeth, then wash face, then put on pajamas and only when the pajamas were on was I allowed to open the covers. If I deviated from that order, she would get very upset.
I already knew that Lola has a complicated personality. But it was manageable. She was usually happy and sociable. Then things started to change. She was often down and grumpy and withdraws much more than before. There is hardly anyone left from her group of friends. She started to avoid social situations for fear of food. The school canteen is a red zone, because that’s where apples and chips are eaten: pretty much the worst thing for Lola. Yet she never looses it at school. She is under stress all day and is busy avoiding people who are eating. But she holds back. The discharge only comes at home…
Lola screams and cries almost every day. My husband – her stepfather – in particular has to endure it. Lola never liked Willem. I divorced Lola’s father because I fell in love with Willem. That has been very difficult for her, I understand that. But it’s been nine years now and there has to come a point where she starts to accept him and the situation, right? What makes it extra difficult for Lola is that Willem and I have a daughter. Anne is now eight years old and Lola has been very jealous of her from the beginning. When Anne was a baby, Lola would always start crying as soon as I held her in my arms. That jealousy never completely went away.
Lola also finds it very difficult that she lives in two families. One week with me and Willem, the other week with her father and his new girlfriend. Lola’s father thinks ‘the whole sound story’ is nonsense. He thinks misophonia is ‘B.S.’ and thinks that Lola is acting out and has a problem with attention. Lola’s relationship with her father is under enormous pressure, she doesnt feel he takes her seriously at all. And I think she is right about that. I may get a little too caught up in Lola’s problems, but my ex is the opposite. He pays no attention to her suffering whatsoever. Unfortunately, my ex and I don’t get along very well and communication is difficult. That doenst help the situation…
Because I’m worried about Lola, I try extra hard to make her happy. I often walk on eggshells to avoid saying the wrong thing and spent a lot of time worrying about her. Anne is very easy-going and and always cheerful. She moves through life effortlessly. On the one hand that is very nice, but the danger is that I lose sight of her because Lola requires so much care and attention. That’s why I’ve been consciously trying to divide my attention better lately. I don’t have to sit or call Lola for an hour every afternoon to talk about every detail of her day…
Although there is no point in thinking in terms of guilt, I still feel guilty about the divorce and what it did to Lola. I also often wonder what would have happened if I had known about misophonia earlier. Then I would have taken Lola’s comments at the table about Willem’s smacking much more seriously. I have to donfess I often thought she was actig out, annoying teenage behavior… Because I didn’t take it seriously enough, it got so out of hand. If we had put Lola in therapy earlier, the obsession might not have become so extreme…
But that’s all talk after the fact. It is what it is now and we have to look ahead. Lola has recently started therapy. She has one-on-one sessions with a therapist as well as group therapy. Although she still has a long way to go, I already notice a difference. She especially likes group therapy because she finds recognition among fellow sufferers. For a long time Lola felt very lonely with that fear and obsession around eating noises. Now that she knows that she is not alone with these feelings and that there are others who understand her and experience the same thing, she has gained much more peace. She no longer feels like a ‘freak’, as she puts it herself. She is less down and less angry.
The treatment also consists of relaxation exercises, attention exercises and tolerating and influencing the sound experience. For example, she learns to replace negative associations with positive ones by looking at pictures that make her feel good while smacking sounds are being played in the background. She also learns how to talk to herself to stay calm when she feels anger and disgust. In this way, she learns little by little to better tolerate the sounds that irritate her and not to focus entirely on those sounds.
Lola now also has very practical tools for dealing with misophonia. For example, turning on music when eating so that she hears the smacking sounds less well. Or wearing earplugs while eating. On the train or in the waiting room she wears headphones with music and during a test at school she is allowed – in consultation with the teachers – to wear earplugs and headphones with soft music so that she does not hear the coughing and breathing of classmates. At home we eat in front of the television when Lola is there. I don’t like it and much prefer to eat together at the dinnertable, but if I have to choose between all together in front of the TV or Lola alone upstairs, then the choise is easy. I choose Lola!.
At her dads, she eats alone in her room. It breaks my heart to think about that. But I have learned to accept that I have to let go of certain things. I have no control over my ex and how he deals with Lola. They have their own relationship and must find their way together. I have also learned that it is not my job to fix Lola or to save her. As hard as it is, this is her process. I can only assist and support her as best as i can. I can make sure our home is harmonious and good, so that she feels safe and loved.
I believe disorders do not arise in a vacuum but in a family system, that’s why we also started family therapy. Lola gets frustrated sometimes from all the therapy sessions, but I think we have to go for it now. If I’ve learned anything from the past few years, it’s that you shouldn’t let things drag on. If you look away from problems or don’t take things seriously, things will only get worse. You have to face the monster as they say. Confront your problems and bring them into the light. Only then can you resolve and let go of things and move forward.
Last week we had a very good session. Lola and Willem have spoken out a lot. She said that she hated Willem for years and saw him as an intruder. Willem confessed that Lola can make him insecure and he feels hurt by Lola’s comments about him. They both burst into tears and fell into each other’s arms. That was the first time I ever saw those two hugging! It was a huge breakthrough and I am convinced that as our family dynamics improve, it will also have a positive impact on Lola’s misophonia. We are all connected after all.
Although Lola still has a long way to go and things are not always running smoothly in our family, I look positively to the future. Lola is calmer and happier. She can deal better with the misophonia and can express what is going on inside her much better. We can all cope better with misophonia because we now know what it is and how we can help Lola with it. The relationship between Lola and Willem is changing and Lola is also nicer to Anne. All in all, I see a lot of changes for the better.
I have changed myself too. I’ve learned not to feel sorry for Lola. By thinking that way, I put her in a victim role and I don’t want that at all! I want to empower her. That’s why I’m now mainly focusing on how I can support and coach her. No more: come to mommy poor child. But: good for you, taking that test with earplugs in! I haven’t completely gotten rid of my guilt yet, but it is becoming less. The best part is that I feel less powerless. My job as a mother is to support my daughters – both – on their way to adulthood. Step by step forward. I feel we are on a good path now.”
More about misophonia:
webmd.com/mental-health/what-is-misophonia
Foto van Elyas Pasban via Unsplash
