Janneke (43) from Bergen op Zoom has been struggling with health problems from an early age. Research was not for years. Twenty years ago she was diagnosed; She thought her story was over. The semicolon that is now immortalized on her wrist pulls her through difficult periods so that she can continue to write to the rest of her life.
As a child she was extremely tired and often sick. She regularly could not hold on whole school day. In her puberty she became sicker: “I was sick at home every month,” she says. Yet the doctor did virtually nothing. “It will be part of it, perhaps because of menstruation or due to stress,” she was told.
In 2005 there was finally a diagnosis: endometriosis, a chronic disease in which womb lining grows outside the womb. It causes severe pain, can affect organs and lead to infertility. “I drove to my best friend, I just thought: maybe I can’t have children.”
“What would end up from my dreams? I didn’t want to live anymore.”
The years of denial of her being sick had left deep traces: “I always did everything to hide and just participate. As a child my grandmother once got angry when I was extremely tired: I had to” do it. ” So she occurred healthy and happy. That exercise gave birth to art: “Because of the mask I set up, people sometimes don’t believe how sick I am.”
After the diagnosis, she remained exhausted. Doctors linked that to endometriosis, but also after treatment the fatigue got worse. “I couldn’t cook, sitting down my teeth had to brush and slept sixteen hours a day.” In the meantime, she tried to keep her own company running, but she fell out more and more. She insisted on further research and another ten years after the endometriosis diagnosis one followed: ME/CFS. This is a chronic disease in which the body completely exhausts after minimal effort. “For a healthy person it feels like you don’t sleep for three nights, or as if you can no longer do after an extreme sports performance. Only that feeling never leaves.”
The blow came hard. “The diagnosis felt like a death sentence. Me is not deadly, but the only thing I wanted was healed and that was not possible. What had to come from my dreams and talents? I didn’t want to live anymore.”
Janneke has experienced that something wonderful can happen even in such a low point. Because she had no energy to cook, she ate badly. When she switched to food shakes with all the necessary building materials, she felt hope. “I then told my family: this is the last thing I try.” It worked. Later it turned out that she had been in a pem, the most characteristic symptom of ME/CFS. Then even a small effort leads to extreme exhaustion, sometimes for months. “Only by completely closing myself could I charge.”
That recovery felt like a second chance and that she immortalized with a tattoo. “I really thought I was going to put an end to my life, but opted for a comma. For me it stands for hope: there is always a way, no matter how hopeless it seems.”
Janneke wants others to struggle with (mental) health that too. “You have to be the one who wants to put the comma, but you know that something can always happen that makes you see a way out.”
Now that she has been completely rejected, she refuses to believe that her life no longer has value. On social media she tries to grow understanding and help others. Yet she gets many negative reactions: “Don’t work well and still get money,” people write. “
“People who say I am a benefit recipient are unjustly jealous.”
She is annoyed by the image that many people have of disabled people: “People are jealous, it is not a free vacation, often we don’t even have energy to leave,” she says irritated. “Disability does not mean that you have to lie in bed until you die. It means that you are unreliable as an employee: one week you function well, the next three weeks do not make you often sicker.
Her tattoo remains a hold for Janneke. “He still has hope to me every day. It is my memory that I have to continue to write to the rest of my life.”