Josine van Paassen - A life with Ehlers-Danlos Syndrome

My name is Josine, and I know Rachel from the adaptive CrossFit Games. From the beginning, we were very close in the rankings, and by some miracle, we both made it through. We didn’t know if it was going to work, but we both had hope. And now, Rachel is launching a platform with this name, which suits her perfectly.

I am also someone who always has hope, luckily, because I have needed it many times in my life ;-). Hope is everything. That’s why I’m so happy to be able to write something here.

Who am I?

I’m a 46-year-old adaptive athlete from the Netherlands, mother of four, and married to the GVR (the Big Friendly Giant). An adaptive athlete means that you sport with a body that doesn’t always cooperate.

As long as I can remember, my body has been doing strange things. Joints that dislocate, tendons and ligaments that spontaneously tear, internal bleeding, a heart with multiple irregularities, stomach and intestines that barely function—just to name a few.

The most serious was a large lump in my arm (the size of a tennis ball) that doctors thought was something bad. After months of tests and scans in various hospitals, I was told it was a malignant tumor. I was 29 and was about to enter a long and difficult path with chemotherapy, radiation, and surgeries. That was when I first noticed how I react to medical setbacks: optimistically and practically. I knew it was going to be a tough time, but I also knew I was strong enough to handle it. I’ve never been afraid of getting sick or dying, but I went into “operation mode.” I informed everyone, made arrangements with my job, and bought nice new pyjamas because I wanted to look good in the hospital.

A few weeks before the first surgery, I received a call saying they had doubts. I had to come in, and I was told it was benign. That was quite a surprise. I was happy, but also confused, and I didn’t dare to fully believe it. But all the treatments were cancelled, and that was the end of it. So, I could call everyone again to share the good news and continue with my life as if nothing had happened. It all felt very surreal. Luckily, I had beautiful new pyjamas as a reminder.

Fast forward eight years later. I was pregnant with my second son, was sick for 9 months, and never got better. At first, I thought it was just the pregnancy, then the birth, breastfeeding, lack of sleep, etc., but it kept going on.

Eventually, it turned out that something else was going on. I had Ehlers-Danlos Syndrome, a genetic defect in connective tissue that makes almost everything in your body function differently (connective tissue is literally everywhere). Strangely enough, this was a relief because I finally knew what had been going on all this time and also what I could do to take better care of myself.

I hoped there would be a solution, but that wasn’t the case.

The main solution is making sure you have a team of good doctors, physiotherapists, trainers, and loving people around you who can help with all the challenges that come with this condition. And I’ve managed to do that quite well. I’m constantly in and out of hospitals, and taking care of myself is a full-time job, but I’m getting better at it.

It also helps that I go to the gym almost every day, which makes me feel stronger, have less pain, prevent my joints from dislocating daily, and keeps my organs functioning reasonably well. CrossFit is literally my lifesaver, and I call it my permanent rehabilitation.

Ehlers-Danlos Syndrome is also called EDS. People with EDS often say it stands for Every Day a Surprise. You’re constantly surprised with new medical challenges. It helps to be positive and flexible.

With every setback, you have to find a way to cope.

Often, you can’t solve things, and you have to learn to live with them. Because of my illness, I’ve had to give up a lot: my own business, my job, my master's degree, and a large part of my social life.

But it also brings me things. Friendships and family relationships become very clear; you can see exactly who is there for you and who only drains your energy. It also brings new opportunities, like the adaptive competitions I now get to participate in. Through that, I meet all kinds of amazing people who also push themselves every day and find ways to deal with their illness or disability.

Sport is often the solution to problems.

Physically, but also, and perhaps especially, mentally. When I’ve seen a doctor and received an unpleasant diagnosis, it helps me a lot to go for a run, do yoga, or do a CrossFit workout. If that’s possible, often with the necessary adjustments, I know I can still do things, and that helps me put it into perspective. It gives me hope and self-confidence. And that’s what I love about this platform: it gives people hope. Everyone gets their own share of challenges in life, and we have to learn how to deal with them. It becomes easier when you can read inspiring stories from others.

My personal hope for 2025:

Is that my health remains stable and that everything goes well with my family. Additionally, I hope to help people with disabilities or illnesses to start exercising and moving more. This can be done in many different ways. Right now, I don’t have the time or energy to turn this into a business, but I’m connecting with more and more people online who share the same ambitions as I do, and that’s incredibly exciting.

I feel every day how sport and movement help me, and I’m happy to help others experience the same.

Furthermore, I hope I can qualify for the adaptive CrossFit Games again. I know this might not continue for many more years, as I’m already 46, but every qualifier and competition I get to participate in is a bonus.

I’m not doing it to win, but for the inspiration and the camaraderie, and as long as I can do that, I’m very happy.

@Josinegraefe