“I Went To Stand Up & I Couldn’t” Julia Brouwers on Redefining Her Future And Creating Inclusive Workplaces

Julia was headed toward a career in swimming until she suddenly couldn’t walk. An interview of courage found through chaos, packed with positive energy and important insight into inclusivity.

Julia Brouwers is based in Amsterdam where she is a key part of the diversion & inclusivity team for Home & Body brand Rituals - and on a mission to create more inclusion and honesty in the business world. As a teenager she describes feeling stuck when deciding what direction to take, she was already in the top tier of candidates for the Dutch Olympic Swimming Team and lived each day boldly for her sport.

One day at school, however, her life changed significantly, throwing a cloud over her swimming career and putting just about everything else on hold too. She went to stand up during class and she couldn’t. Put simply, her legs just would not move.

Seven years of pain, struggle and uncertainty followed, with not a single doctor able to figure out what was causing this sudden paralysis. That was until her father discovered an article that detailed similar symptoms; soon after specialists confirmed that it was a connective tissue disorder called Ehlers-Danlos Syndrome, and Julia began to push forward.

For Julia her condition means that some days the feeling in her legs returns, others she can only move with the aid of her wheelchair. Julia has courageously learned to find strength in both the ups and the downs that come from living with Ehlers-Danlos Syndrome, and most importantly how to continue enjoying the things that make her happy.

Julia and Alexandra were connected through Hedoine’s Board Advisor Tom Meggle. When Julia shared her story, her positive energy was thrilling. She is an absolute powerhouse, an inspiration and a Real Hedoine.

Losing the feeling in both your legs so suddenly completely changed your life. How did you feel in the beginning vs when you later learned to accept, and even embrace it?

When you are an athlete, you live for your sport. All you think about is how to get better and achieve your goals. You need a certain mindset and focus to succeed. Swimming was something I lived for. When I lost feeling in both of my legs, I learned the hard way never to take your health for granted. A long path of finding out what was happening with my body followed. It made me insecure and angry. I lost the capacity to do what I loved doing the most. I remember having so much energy left in the night, because I couldn’t work out anymore, I would spend hours and hours watching TV - sometimes until 4am - just to fall asleep. My body wasn’t used to not exercising. So, to be honest, in the beginning I didn’t know how to handle it, I couldn't handle it.

Because I didn’t know what was going on, there was no view of how the future would look for me. The ironic thing though is nobody knows what the future holds, do they? Somehow, I never fully understood that before my body fell apart. Of course, as a kid you never really think of how blessed you are with good health. Until there is a reason that makes you realise, it doesn’t come into focus. I came to realise all of this very early in my life. And not much later, I realised that this was a huge life lesson and in a way a blessing. Being aware of not taking every day and everything for granted has been a huge advantage in my life now. I still cannot embrace every part of the disease that I have. But I do embrace the lessons it teaches me.

What was the most difficult challenge during that time and what helped you cope with it?

The biggest challenge was finding out what exactly was going on in my body. It took me 7 years to find out. And in these 7 years a whole lot of doctors and psychologists told me that I was healthy and that nothing was going on. They doubted me. And that made me, sadly enough, doubt myself. This is what I found the hardest part of it all. My family and friends, who helped me through it, helped me to cope. But also, the strength that I had to keep fighting for the truth. To keep fighting for my future. To never give up and stay close to myself, even when it was so easy to lose myself in it.

Some days you can feel your legs and others you can’t, something you only find out in the morning when you wake up. How do you deal with this each day?

Planning indeed becomes a lot harder and I quickly came to realise that it is especially hard in the current climate - where timing and planning is everything. I have found that the key to dealing with not knowing each day's fate is surrounding yourself with understanding and compassionate people. It gives me so much less stress to be surrounded by friends and family that may not understand me or my body fully, but still try to. I believe it all lies in understanding anyway. In every situation and relationship. A little bit of understanding can make life so much easier and more beautiful, in every way.

What helps me get through everyday life is reading other’s inspirational stories - those that have been through difficulties in their lives as well. This inspiration comes in all sorts of ways: through reading books, listening to podcasts, watching TedTalks or listening to music.

The most important lesson I have learnt from being uncomfortable in my own body, is being real with others and yourself.

But mostly from the people that I have randomly met in my life along the way. Other patients in the hospitals and rehabilitation centres. The people I met during our Flowers For project Bloemen Voor, a project where we give away flowers to strangers, just as a random act of kindness. Most of the times the most amazing conversations followed. Also, dinners and hour-long phone calls with my friends helped me gain a lot of insight about not only them and the way they think, but also in the way that I think and how and why I am the person that I am today.

I think the most important lesson I have learnt from being uncomfortable in my own body, is that being real with others and yourself is something that has become so important to me. To spend your valuable time doing things that make you happy and I just love to get new insights every day. I try to take things one day at a time and that helps me to cope with anything that goes on at that moment - whether I am in pain that day or not.

What is your advice to those in a similar situation?

Never give up on yourself. Try to find things in every day life that make you happy and look forward to them. Try to understand yourself and the way your body and your mind work. Being happy and thankful inside your head can help so much on the harder days. And being happy is a choice, I learned. So, try to wake up every day being happy for the little things in life. Don’t rely on others to make you happy but make yourself happy!

You flew to Ghana by yourself at the age of 22 to volunteer in a shelter with orphans, teaching them English and setting up better learning environments for them. What was your biggest takeaway from that experience?

I stayed there for 4.5 months. The greatest lesson I learned from living there is perspective. Even when you believe or think that you are having the hardest time, knowing that you are still privileged in so many ways is very important. I know that nowadays it’s easy to think that you are behind or not where you should be because of social media, comparing yourself to people you follow, whom you consider idols, could make you feel like your life is less special or outstanding. The opposite is true. In this world there are so many people that are in much worse situations than you. And realizing that and feeling grateful for what you do have is, I believe, very important. To gain perspective. Being in Ghana, working with kids that have way less than myself, but still were smiling every day and thankful made me realize how lucky I am.

Even though my situation isn’t the easiest, it’s most definitely also not the hardest. And the one thing that makes everyone happy is, coming back to my favourite quote, helping someone else. When you put a smile on someone else’s face, it instantly puts a smile on your own. And the best part: it’s free and so easy.

You are a bundle of joy and positivity, but you mentioned that you face a lot of dark days as well. What gives you the energy to overcome the mentally challenging times?

Haha, well… maybe when you talk to my partner or family, they would tell you differently (winks). I am certainly not always a bundle of joy and positivity. However, I certainly do try my best to be most of the time. I try to always keep that perspective. Indeed, there has been a very dark time where I lost it, when the pain became unbearable. Not only physically, but mostly mentally. I felt alone and did not see the perspective of my situation. I think it mostly came from situations where I’d compare my own life with others – ‘why can’t I still do everything I want?’

When I stop the comparing and replace it with being grateful, looking at everything that I still have and can do, it makes it so much easier to overcome these darker moments.

What's your favourite indulgence?

Food. Without a doubt: Food. Haha! I always eat sushi when I’m feeling down, that’s my go-to. But basically, I just love eating, dining, cooking, baking, going to restaurants, trying new recipes, a cheeky take away, watching cooking programs; simply all of it! And always in the company of my loved ones.

When you returned to Europe, you studied and started a career in HR to bring more inclusion, diversity, and honesty into the business world. What inspired you and what do you mean by ‘honesty in the business world’?

My own experience with job interviews inspired me, especially knowing that for me it was even relatively easy to find a job. It made me realize that despite that I don’t feel much different walking behind a walker, other people see me differently.

We are all just humans with our own quirky habits. In the business world it sometimes feels like you must be a certain way, which, in some situations, is good. But it can become a little much after a while. I mean, people already apply for a job and sometimes they must lie about their studies or experiences, because it makes it all look ‘better’. We often pretend like everything is always fine when we are at the office, yet the number of burnouts is increasing every day. I believe that being a little more honest in the business world could make a huge difference for a lot of people that struggle with their feelings, emotions, or acceptance when it comes to work.

How do you tackle the challenge of bringing more inclusion, diversity, and honesty in the business world?

I believe it’s a whole process. And it has so many factors. When I started this project, I thought it was something that I was ‘just going to do and change’. But it is more than that! It is a constant process of learning, teaching yourself and unlearning habits and thinking patterns. You must be open and willing to change the way you think about something, and for most people, that is the hardest thing there is. The key is to have a very diverse team, so that every aspect is tackled. For me, for example, it is very logical to think of an elevator when you would open a shop. For a person without a disability, it might be the last think they would think about. Another example is a prayer room, for me that wouldn’t necessarily come to mind straight away, however, a person with a Muslim background might be more likely to consider this. How much easier it gets when everyone is considered!

What are the top 3 things that we can all do or change for better equality in the business world or other workplaces?

1. Unlearning unconscious bias is a very important one, more conversations.
2. Surround yourself personally and professionally with people that don’t look like you, in all possible ways.
3. Create a welcoming environment for everyone within the company.

What does authenticity / being authentic mean to you?

Daring to be yourself.

What has been the biggest lesson you’ve learned professionally?

That everyone is human. When I first started working, I really looked up to people higher in the company. It made me insecure about myself and I doubted whether I was good enough. But quickly, I came to realise that it is not the position you have that makes you a good person. It’s your willingness to see everyone around you as your equal - despite the background, education, religion, ambition, level, or age. We are all just trying to deliver work the best we can, why not make it easier by being kind to the people around you.

Nobody knows what the future holds, do they? Somehow, I never fully understood that before my body fell apart

You say your biggest motivation is to inspire others by sharing your story. You’ve even started your own blog What are your future plans for it?

I want to reach out to as many people as I can, especially those facing hardship both mentally and physically. With the situation around Covid-19 that we’re all in now, I think that’s more important than ever. I’m hoping to spread kindness by sharing my story and experiences in a transparent and relatable way. I hope to encourage people, and to help them through difficult times.

What is the boldest decision you’ve ever made?

I think going to Ghana for 4.5 months by myself (against my doctors’ advice) was one of the boldest decisions I’ve made to date.

What's good advice, that sounds like bad advice?

Always keep smiling. My dad used to always say this to me and it’s something I started to live by, which is great. But also, quite hard if you feel like you are wearing a mask to cover up the pain you are in or whenever you feel just a little sad. So I guess, I would change it to: “Smile as often as you can, and if you can’t that’s ok, just be honest with how you are feeling”

Could you share a favourite quote or saying that you relate most to as well as what it means to you?

This is a hard question for me - only because it’s difficult to choose just one! I love quotes a lot, they always give me a lot of inspiration and beautiful insight. If I have to pick, I will go for: “When ‘I’ is replaced by ‘we’ even illness becomes wellness’’, by Malcolm X

I truly love this quote because it is something that I experience every day through being loved by my family and friends. I try to live by this. I am always willing to help others because I understand how lonely it can feel when you’re going through tough times by yourself. If everyone would live by this quote, even people in the worst situations wouldn’t be alone. How lovely would that be?

What makes you a Hedoine?

I think your description says it alll: Bold. Passionate. Inappropriate. I think I don’t (and no one really does) fit into any particular box. And I just love that - and the fact that this is what you stand for as a brand supporting women.

You can support Julia Brouwers and her mission to voice inclusivity via her her blog or over on her instagram. While you're here, share this article with someone who inspires you and sign up to our newsletter below to have the latest Real Hedoines in your inbox.

Picture courtesy: Kalen Hayman and Désirée Hofland.