Writer Anne Houtsma Reflects On Her Journey With 22q11ds & Expression


Anne Houtsma can be categorized in many ways, a writer, carer, graduate, lyricist, survivor – there are few people in the world that can espouse the same journey that Anne has embarked on. She was diagnosed with a rare genetic condition aptly named 22q11ds when she was younger and instead of letting the hurdles that followed keep her from flourishing, she has dedicated a majority of her life to give a rising hope for those who suffer from a similar affliction.

Her unwavering dedication is inspiring enough when you consider the knockbacks she has had to deal with. Through various trials and tribulations, she has been able to solder a sense of identity and carry it into her creative pursuits. She took the time to answer a few of our questions about her journey to this point, her lyrical success, and some wise advice on how best to cope if you’re in a state of struggle.

Hey Anne! Thanks for answering a few questions, let’s start by getting to know you a little better, how would you describe Anne Houtsma

My name is Anne Houtsma, I am a 39-year-old woman from the Netherlands. I live on my own with my 2 cats which mean the world to me.

Anne Houtsma - cats

I have the unknown disability 22q11ds. It was a long search before we discovered what it was that caused the problems I had. I couldn’t speak until I was at the age of 4 years, and I needed a surgery to fix the open palate. This was the main cause why I could not speak.

Growing up I always felt different than other children, but as I got older, I learned that being different is part of who I am.

What kind of family situation are you coming from and how did they helped you to deal with 22q11?

I grew up in a family with 2 loving parents and 2 older sisters. My parents are blessed with a high education and so is my sisters. I was always struggling with the fact that I had a lower level of school then my family had, and I tried to get a higher level. When I transferred from lower school to high school and I got a whole different level then my family did I felt useless and got into a big depression which I dealt with until the age of 25.

At the same time, I had a hard time I could not deal with the fact that I have some stupid syndromes I did not wanted, and I got extremely bullied on high school. Being in a depression was what got me to escape from the situation at school. It was hard for my parents to find the right school for me, as I could not function at a normal school the options where limited. We started at a school for children with learning and behavioural problems, but I did not fit in there at all. After 2 years I went to another school for children who were sick but that school I did not feel at home either as I am not sick. I felt I just had a stupid syndrome no one heard about.

For readers who may not be familiar with 22q11ds, could you explain a little bit about what it is and how it has affected your story?

The basics of 22q11ds is simple to explain. It’s a syndrome caused by a microdeletion on the long arm of chromosome 22, which causes various symptoms. As it’s only discovered in the 80s it’s a fairly new syndrome which many people have not heard about. It got discovered with Dr Angelo di George.

The symptoms of 22q11 are quite varied, for me it means that I suffer from depressions and anxiety. I’m also slow in learning things, which makes me scared of new situations. I always felt that I got lucky with the symptoms that I am dealing with as I can make my own decisions in life and take care of myself. Even though it had an impact on my life due to the fact that I could not find work the way I always tried to.

People who have learned to deal with the cards they’re dealt typically have a stronger and unique outlook, have you found any silver linings in your journey with 22q11ds?

As I tried to live a normal life, I started working after I graduated high school. I had to go through many failures before I realized I couldn’t carry on this road anymore. I was able to find work but could never keep it for longer than a couple of months as I got fired.

People I worked with did not understand my problems as I tried to be normal, I did not want to tell them I was different. I did not want to be treated differently but that’s the problem I was running up against… I had to learn that the hard way and had to accept that maybe I was not able to keep a job like everyone else. In 2006 I started receiving government benefits, but I still tried to fight to get out I wanted to earn me own money and be proud of myself.

In 2013 I started another education in social care because I really wanted to find work that fits me. It was hard work, but I loved to take care of older people with dementia. It made me feel happy to be able to assist them in their needs. In 2016 I graduated with pride, and I started to look for a job.

How did that turn out for you?

In 2017 I was able to go to a nursery home where I could start as volunteer. It was a possibility to get a contract if everyone was satisfied. I did the best as I could, but I ran into stressful situations which were hard to deal with.

I am used to the same settings as I have a bit of autism as well, I couldn’t deal with if I was thinking to do an activity with a certain group and the plans suddenly changed. I had to deal with anxiety, stress and colleagues who did not know how to guide me.

After 8 months of doing the best I could I got told that even do they really wanted to give me a contract they told me that they were not able to give me the help that I needed to be able to function.

I hit rock bottom once again and had no idea how to get up from there.

Listening to the inspiring lyrics you wrote on ‘We Lost It’ had me curious about your process. Has writing always been your outlet for expression?


Above is a beautiful song written by Anne Houtsma (sing by another person). The song is about the world and how it is worrying her with the upcoming violence.

I started writing in 2012, first on my own blog where I wrote about my experiences trying to find my way into school and work, trying to get out of my situation where I was living on benefits, later I got articles published on a Dutch news site which made me very proud.

During the corona crisis I wrote a lot of columns in order to try to show people where I come from. I hoped I could help people to tell my story as I had dealt with many difficulties.

I learned to write when I was inspired and always write straight from my heart. The song I wrote on We lost it, was written in a time of period when I was worried about the society, the state of the world dealing with corona and people struggling with the whole situation. Being stuck at home, makes me sometimes feel like I’m a watcher not really participating in society.

Are you planning to follow this path in creating more lyrical expressions of your perspective?

I do not know what my future will bring, I just know I couldn’t keep carrying on the path I was going on for all my life, so I’m trying to find and create a new path.

I would love to help people and be a motivational speaker, but my energy is not always letting me do the things that I really want to do. I need to do everything on my own speed and time and cannot work under pressure. Its my goal to raise awareness for 22q11ds but I need to do that on my own


I’m trying to find a way to make my life worth living on a way that works for me and I hope this song will create a new opening for me.

Any particular people you draw inspiration from? Either in your journey with 22q11ds or your writing, or even both?

Anne Houtsma - draw

When I fell into a depression in 2017 after I had another bad experience in work, I started to play a game called the world of warcraft. The people I met in that game became true friends and they inspired me to keep carry on. I learned a lot from them, and they helped me deal with life issues a lot better.

For instance, I was trying to run away from the problems in real life, but I was also getting confronted with the same issues. I was scared of learning new things and it took me a lot of time to learn dungeons and understand the mechanics. My friends helped me through everything and stood by me with every step that I took. Even though I got through many dramas with guilds they stuck with me and helped me to learn from it.

It’s because of them that I did not always feel alone as I’m at home a lot of times. It my dream to meet each and every one of my friends who have helped me and inspired me through my dark times.

Anne Houtsma drawing

With COVID bringing to light the struggles many people are facing and the importance of mental health, do you have any words of advice for readers who may be struggling with their own burdens?

Try to take the time that you need. I know not everyone has that position, but this is what I learned from my depression. Trying to be someone else was not working for me, I needed to find my own personality and be the person I am today.

Dealing with my struggles in life, I have an expression that keeps me strong: What doesn’t kill you makes you stronger. Which helps me in dark times.

Finally, where do you see yourself in the next chapter of your life?

I hope to confront some old grievances and to be able to accept myself the way I am. It’s a growing process that might take a lifetime, but I don’t want to run away from my problems anymore. Writing is a way of expressing myself and I hope it helps other people dealing with their problems.

If I can keep carry on with that, I consider myself as a lucky person.

Contact Anne Houtsma:

Thank you Anne for your time!

You can follow up with Anne Houtsma at https://imperfectworld.jouwweb.nl/





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