I feel you, I hear you, and I want you to know you’re not alone.Posted August 27, 2020
My name is Julia Brouwers, I’m turning 24 soon, and I live in a small city close to Amsterdam in The Netherlands. I am trying to create more awareness for people with disabilities. I recently wrote a small post about having a disability in the business world and unexpectedly it has been viewed over 1.38 million times. This showed me the need of being more open about the struggles there may be when you’re disabled and want to apply for a job, for example. But also, I want to share my story and hopefully inspire others by doing so.
When I was 12 or 13 years old, I became a Dutch national champion in a swimming relay team. It was my dream to one day go to the Olympics, it was my vision and main ambition. 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 began. I had no idea what had happened to me and felt nothing but frustration and sadness.
After that moment, I spent seven years trying to find out what was wrong with my body. Seven years of ups and downs, good periods and bad periods, wheelchairs, and walkers. Surgeries and recoveries. False diagnoses, and many doctor visits. Psychologists and coaches. Depressions and reliefs. Lots of support and losing friends. Insecurities and strength. And especially being in a lot of pain, always.
Seven years later, I finally got my diagnosis: hypermobile Ehlers-Danlos syndrome (hEDS). Honestly, I was so happy when I first got diagnosed. Finally, I didn’t have to doubt myself anymore. In the years of my search, I really started to think there was something wrong with me mentally, that I had made up my pain. I used to hate my body for the pain it gives me daily. Currently, I can say that I’ve come more to peace with it, but that didn’t happen overnight. I still struggle a lot with good and bad days. But overall, I try my best to find a new purpose through it all. Being an athlete in my youth has taught me the strength to never give up. So that’s what I try to do, never give up.
Ever since I got diagnosed, I try to reflect on my life and on what I find important, in order to live the life I want to be living. Even though it’s completely different from what I had ever imagined for myself. Not every day goes as planned, but I still try to put everything in perspective and focus on the things that make me very happy. Often those things are small occasions. For me this would be catching up with a friend, listening to great songs, spending time with my family, helping others, watching a good movie, etc.
I decided to do volunteering work in Ghana two years ago, I went there all by myself with my walker and wheelchair. Very scary and risky, of course. Doctors advised me to stay home but I felt like EDS had already taken so much from me. I wanted to help out other people that were in a much worse situation than me. It helped me gain that perspective that I feel I need in order to be grateful for my own life.
Living live in pain is not easy, walking behind a walker, or sitting in a wheelchair in your twenties isn’t either. I still struggle with the fact that my disease is both visible and invisible. When I walk behind my walker you can clearly tell something is ‘wrong’, when I don’t you wouldn’t guess that I’m in pain the most of my days.
What helps me is the support I get from others. The understanding that not every day is the same for me and the gratitude I feel for the circumstances I live in, which makes it a lot easier to deal with it. I want to say for everyone in this situation: I feel you; I hear you and I want you to know you’re not alone. I know nowadays it seems like everyone has a 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?
At the same time, 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, or know what you go through 100%. That’s why my biggest lesson learned is that you need to make the inside of your head a happy and safe place!
For me, focusing on myself and the things/people I value are helping me through it. I might never be at those Olympics, but in the meantime, I did become aware of what life really means at such a young age. That’s the real win for me.Tags: Athlete, Coping, hEDS, hypermobile EDS, swimming
Categorized in: Stories