Image by Désirée Hofland
Let me introduce myself…
I am just an ordinary woman, with a less ordinary life. My name is Julia Brouwers, I’m 24 years old, currently living in a small city next to Amsterdam. I would describe myself as passionate, sensitive, open and a helper. Also, I am very ambitious. But my body often stops me there. I cannot stand all the unfair things in life. I often feel an urge to make a change even if it’s a small one. My main goal in life is to inspire and be inspired. To have no regrets and leave a footprint. To change lives even if it’s just one, or your own.
When I was 12 and 13 years old I became Dutch national champion in a relay with swimming. It was my dream to one day go to the Olympics. It was my vision and main goal. I trained hard for it, until one day my legs gave out. I couldn’t feel them anymore. This happened exactly two weeks before the National Championships begun. I had no idea what had happened to me. And felt nothing but frustration and sadness.
Image by Désirée Hofland
After that, I spent 7 years trying to find out what was wrong with my body. 7 years of ups and downs, good periods and bad periods, wheelchairs and walkers. Surgeries and recoveries. False diagnoses, many doctor visits. Phycologists and coaches. Depressions and reliefs. Lots of support and losing friends. Insecurities and strength. And after those 7 years finally, my diagnose was there: Ehlers-Danlos Syndrome, a connective tissue disorder that had been messing with my body all along.
Living with Ehlers-Danlos Syndrome
How do you live with a disease that is so unpredictable? One day I feel okay and I am capable of walking behind my walker or even without. The next day I can barely even come out of my bed. It’s been a life changing diagnose. I would definitely describe it as a challenge. I have days where I am sad, angry, disappointed and frustrated. But luckily nowadays these are the exceptional days.
Now, I can be thankful…
I must say that I became thankful for the disease. Thankful for the pain, challenges, frustrations and disappointments. Of course, that hasn’t happened overnight. It has been a long and bumpy journey, and it still is. But the fact that I am now able to say: thank you for the lesson, this has brought me a lot of strength, courage and power. Is something that I am truly thankful for. I would like to share with you how I have changed my mindset over time.
I feel honoured that you have taken the time to read a little bit about me. I hope to inspire you and if you are struggling, I would like to let you know two things that I have experienced:
You are not alone. I know nowadays it seems like everyone has the perfect life. But everyone has their own struggles. Let’s support each other. Make each other feel seen, heard and loved. Don’t we all want that?
When ‘I’ is replaced by ‘we’, even Illness becomes wellness
You are alone! I know this is the exact opposite of what I just said. But I have had a hard time accepting this. You can be surrounded by people and still feel lonely, also you can be alone and feel surrounded. No one can feel your feelings, see your thoughts and know what you go through a 100%. That’s why my biggest lesson learnt is that you need to make the inside of your head a happy and safe place!
Thank you for taking the time to find out a bit more about me. I’m so happy you’re here and I’m excited to take this journey with you.