Daisy's story.

Living with a chronic illness

General information

Can you tell us something about yourself?
(For example your name, age, profession, hobbies)
My name is Daisy van Pinxteren, I'm 41 years old. I live with my two children (joint custody) and dog in Brabant.

I have several qualifications, but due to allergies, I ultimately ended up in the supermarket sector, where I thoroughly enjoyed working. During my years of working, I bounced from job to job, often being sick and frequently absent from work, suffering from depression, and also experiencing numerous physical complaints, which led to contracts not being renewed. After the pandemic, I wanted to do more meaningful work and started cleaning for people in need. That's where I fell through the cracks. This work was simply too demanding and became my downfall.

Unfortunately, I became fully incapacitated in November 2024 and am now receiving an IVA benefit. My mind desperately wants to work, but my body simply won't cooperate.

My hobbies: I have a TikTok account that's gotten out of hand, but I also love going to the sauna and soaking in a hot tub; my body loves warm baths. I go for short walks with my dog. I also love the beach.

What chronic illness do you have and when were you diagnosed?
I was diagnosed with Hypermobile Ehlers-Danlos Syndrome in January 2023. This is a rare congenital defect of collagen and connective tissue.

What was the process like leading up to your diagnosis?
From the age of 12, I struggled with a lot of physical ailments. I couldn't keep up with gym class. I often had ankle injuries, lots of ailments throughout my body, lots of allergies, and was extremely hypermobile. However, I was always bullied and raised by a mother with a narcissistic personality.

My complaints were blamed on my hypermobility, mental health, and growing pains. I just had to learn to live with it. My mind was constantly fluctuating. The bullying continued for a long time, and I hid it from my parents because it only confirmed that "I didn't matter."

The pain has always been there, and it's been therapy after therapy, with physiotherapy, occupational therapy, chiropractor, osteopath, psychologist, psychiatrist—I've truly seen and endured so much. And yes, what do you do when everything is blamed on your psyche? You keep going. After my divorce from the father of my children, I ended up in a narcissistic relationship. And I fell back into a deep hole. After that, I started schema therapy, and finally everything came together. That truly saved me. Then I was told I also have autism, which put some more pieces of the puzzle together. But the pain persisted.

At 36, I finally had a mental health clearing and found a way to move on with my life. But the pain persisted and became unbearable, so I decided to go to the doctor. Meanwhile, I'd seen a different doctor because I was moving. And my doctor said, Daisy, "I want to get you tested for EDS." Um, EDwhats? He gave me a website and asked me to review it. He referred me to a rheumatologist, whom I couldn't see until November 2022. I read the website and my life story, and recognized so much of it.

In October 2022, I was unable to work, and my body refused to do anything. All I could do was lie down and, with great difficulty, keep my family afloat. Finally, I had an appointment with the rheumatologist. The diagnosis: fibromyalgia and hypermobility syndrome. I asked if the GP wanted to rule out EDS. No, this wasn't necessary, and it would cost a lot of time and money to consult a clinical geneticist, and "the treatment would be the same."

So I was referred to a rehabilitation physician. And in January 2023, after a 26-year search, the truth finally came out: Daisy, you have Hypermobile Ehlers-Danlos Syndrome. I cried so much! I was so happy because I seriously thought I was going crazy and it was all in my head.

Impact on daily life

How does your illness affect your daily life?
No day is the same, one day I suffer from this, the next time there, every day I take stock, what can I do and what are my priorities.

What adjustments did you have to make to your routine?
My life has turned 180 degrees. A girl who always kept going (still) has me hitting the brakes every day. My mind wants to, but my body protests. I'm fully disabled, and I can support my family. I do get two hours of housework a week. My children help me when needed, and the three of us are a great team.

How did those around you (family, friends, work) react to your diagnosis?
My friends have always supported me to this day. I haven't had contact with my mother for over 10 years because of the narcissism. Unfortunately, I distanced myself from my entire family. This was a conscious decision. And no, it wasn't easy. Because I always had something going on, people talked about me a lot. Some uncles and aunts would start a conversation, but there was also a lot of talk behind my back. And was it strange? No, I always had something going on, and there was always something. But a chance to explain it: no, no one calls you or asks about it. Only talks about you, not with you. Even my own brother and sister; I would do anything for attention.

 

Physical and mental health

Which symptoms affect you the most?
My fatigue and the pain that is present every day.

How do you cope with the mental impact of your illness?
There are also advantages to having a lot of experiences, and for me, that's completely changed my mindset. I used to be very negative and insecure. Now I've learned to rethink my thinking and enjoy the smallest things. Does complaining or having an opinion about everything make you feel better? NO, so why put so much energy into it when you already have so little energy?

Of course, I don't always succeed, but it's truly what keeps me going. I also draw a lot of energy from my experience and expertise, which I share on social media. I help a lot of people there and feel very valuable. I can do it when I feel comfortable and whenever it suits me.

Do you have any specific aids or treatments that help you?
Every week I go to the physiotherapist to keep my struggling muscle groups moving. And no, not by 10 or 20 kilos… No, by a kilo, sometimes even half a kilo. I still have to laugh when I see myself compared to others. But muscles that are already severely overloaded shouldn't be overloaded any further.

In addition, my medical visits to the doctor, instrument maker, podiatrist, etc.

My aids: I have a reclining brace in my bed, which consists of pillows that help me sleep somewhat relaxed. At night, I wear compression gloves and wrist splints. And sometimes a mouth guard if I'm very tense.

My wheelchair is my best friend, providing a balance between walking and not walking. I have a handbike with my wheelchair so I can cycle with the kids. I also have a smartdrive, a small motor on the back of my wheelchair so I don't have to push myself.

I wear knee braces. And silver splints on all my fingers to keep everything in place and prevent hyperextension. I also wear custom shoes, and thank God, they don't look the same anymore, hahaha... Also, I have small kitchen tools for opening jars, cans, and the like.

I did take medication, but unfortunately, there's no cure for EDS, only pain relief. However, it got me completely stoned, but the pain remained. So I decided to stop the pain medication, and when I'm in a lot of pain now, I take it; it takes the edge off.

Medical care and experiences

Do you have positive or negative experiences with doctors and specialists?
All my praise truly goes to my GP! He saw me, understood me, and helped me with the diagnosis. The rehabilitation doctor also diagnosed me. I also give a big thumbs up to the specialists in the rehabilitation program. I don't want to dwell on the negative experiences too much. The only thing I'm not happy about is the doctors at the UWV (Employee Insurance Agency).

What do you wish doctors understood better about your illness?
It would be so great if doctors would just read up on the disease. But even that, many doctors refuse. EDS is complex and difficult, and many doctors don't want to get involved. Which I somewhat understand, because your life is in their hands. But it is difficult.

What advice or treatments have worked well for you?
Listen to your body!!! I always ignored it because I wasn't heard. But don't underestimate it and don't give up! My rehabilitation has helped me with boundaries and a bit of acceptance, unfortunately, I'm not getting better. But I am living my best life now!

Support and community

Have you found support from peers or online communities?
I started this in 2023, under the name "invisibly ill." Because of its rapid growth, I decided to change my name once I reached 10,000 followers. Since August of this year, I've been using the name "invisibly strong," with my own logo. I run this community together with others in the same situation and have created a WhatsApp group. A positive support group! Not a group of who's sickest or who uses the most medication. No, we accept each other as we are; our motivation is mindset and positivity.

What does support mean to you, and what helps you most?
Take me as I am, don't feel sorry for me. This isn't me. I'm living my best life! Support, a listening ear or a hug when things aren't going well, or a deep conversation. But again, positivity really helps me the most.

Tips and advice

What advice would you give to someone who has just been diagnosed?
Don't be fobbed off if you feel unheard; there's always someone willing to listen! Yes, it takes energy, but don't give up! Enjoy the little things and see the possibilities, not the impossibilities! And TALK about it! Talking can be such a relief!

What advice would you give to healthy people about living with a chronic illness?
Stop judging, especially if you don't see the illness. When I receive judgments, I ask people if they'd like to trade places with me and explain that it might seem like I have nothing, but it's something I go to bed with and wake up with. Positivity is my survival mechanism, something I consciously use!

Future and hope

How do you view the future with your illness?
I'm optimistic! I'm living my best life. Live in the moment and try not to look to the future.

My life is beautiful, I am happy and it would be wonderful if in the future a partner would join me who would complement this even more!

Do you have certain goals or dreams that you want to achieve despite your illness?
I want to expand my social media even further and create more visibility for the invisible. Helping people is in my blood, and I want to use my strengths!

Love,
Daisy.