An Interview With Tineke Winterberg
What is your project?
I am the chairman of Vereniging Misofonie Nederland, which is a patient organisation for people who suffer from misophonia. My work for this organisation consists of everything you can imagine, except for the financial administration and the member administration. My colleague Tom handles this.
Where are you from?
I live in the Netherlands, in a small town near Amsterdam.
Do you have Misophonia?
Yes, I do. Although my triggers have been reduced by 80 to 90%. My misophonia manifested itself when I was around 11 years old. It started with the noises my father made when he drank his tea. I didn’t understand why I couldn’t control it. I was afraid to express my feelings at home so I never talked about it. I guess I didn’t expect my parents and my brother to understand. I have spend my entire puberty stuffing my finger in my left ear when we were having dinner. There have been times when my triggers weren’t as bad, that was mainly when I lived alone. But then I met my wife fifteen years ago and all the triggers were back. I was forced to tell her about ‘my crazy obsession’.
In 2014 I went to therapy in the AMC, which is the academic medical centre of Amsterdam. This was about a year after I found out that it had a name, misophonia, and that I wasn’t the only person on the planet who had this. The therapy worked very well and thanks to my determination I have reached an almost misophonia-free life. There is a number of things I have done to achieve this: cognitive behavioral therapy, counter conditioning, attention shifting, exercise, mindfullness and meditation.
What caused you to get involved with Misophonia awareness efforts?
When I found out that misophonia is a real disorder and that I wasn’t the only one, it was a life changing experience for me. For over 35 years I didn’t understand myself and I certainly didn’t like myself. In all these years I had looked for information, support and treatment but found nothing. After I had had therapy I wanted to help others like me. I figured there should never be ‘a Tineke’, someone who suffers like I had. I quickly learned that there was no patient organisation for misophonia, so I had to start one myself. I told the doctors in the AMC about my plan and as it turned out there was someone else who had the same idea. This person turned out to be Tom. We started working on our plan and on 7 November 2014 we officially launched the organisation. The first thing I did was create a website.
Are there a lot of resources for Misophonia in your country?
The most important source of information about misophonia is the AMC. Misophonia was discovered there by psychiatrist Damiaan Denys. The AMC is the place of research about misophonia and it’s where the therapy is given, which gives hopeful results. The most important source of information online is our website.
For you, what is the greatest struggle with advocacy?
Our first point of action is create awareness about misophonia. We want to explain to people what misophonia means. We do this in clear terms so people get the right image of what it means. Nowadays people with misophonia are being treated as attention seakers or attitudinisers. We want to change this image by raising awareness in both the society and the medical world.
How can sufferers, or relatives of sufferers, help aid with advocacy?
By becoming a member of the patient organisation! The bigger the organisation gets, the sooner medical staff, politicians and the media will see us as a serious discussion partner. Sufferers of misophonia should unite so we can show the world that there are a lot of us. We can then put pressure on researchers and the medical world. As a patient organisation we can raise awareness of misophonia so we can prevent people getting the wrong diagnosis and treatment.
Are there any research programs that you know of, in your area/country?
In the AMC is a research program for misophonia. They have recently finished their research of the brain and the research to see if misophonia is hereditary.
A lot of times, in the U.S. and other countries there is a problem with job and school accommodations for Misophonia. Have you, or any of your contacts run into a problem when applying for accommodations?
We have heard stories of our members about school and work. Some schools are very cooperative and let students who suffer from misophonia do an exam in a separate room or they let them take the exam with headphones on. The same credit is given to employers, most of them cooporate really well. I think that there are a lot of people who suffer from misophonia that don’t even realise that they can ask their employer for special services like a separate room to work in. There is a lot of shame to talk about misophonia. The biggest problem may be the shame people have about their misophonia and to ask for what they really need.
When asked how to cope with Misophonia, how do you respond?
Take good care of yourself. Like anyone with a condition you need to take extra good care of yourself, so go do some more exercise, sleep as much as you need to and reserve some time every day to relax. Relaxation is very important because of the extra tension you carry around when you suffer from misophonia. Don’t wear ear plugs or headphones all day, it makes your misophonia worse. Learn how to shift your attention, first in a neutral situation so you can apply it later in a situation where you are triggered. Start practicing and stay practicing. Your brain can change but it takes a lot of training. Don’t look at whatever is triggering you. You need to realise that you are obsessively looking at your trigger. Look away. If you see it, you will hear it twice as hard. Meditation is also very important, it relaxes you and supports the neuroplasticity.
What do you believe is the most important step forward in promoting Misophonia, and being recognized as a serious condition?
Misophonia needs to be mentioned in DSM. This will make sure there is recognition for this condition and hopefully this will also let people see the urgancy for more research. We also need more patient organisations and other communities which supply the media with information and keep asking questions to medical staff. Individuals can also contribute by being open about their misophonia. But in a helpful way, for example: don’t say you are irritated by a sound but say you are triggered. Avoid words like annoying and irritating because people who do not suffer from misophonia can relate to words like that. It makes misophonia look less serious if you use words like annoying and irritating. Tell people that some noises trigger you, it comes across very different than saying that the way someone eats is annoying you.
Want to get in contact?
Facebook Group: Misofonie NL
Please note, these resources may be in Dutch!