“The most important thing is the connection between people”: facing Long COVID together in the Netherlands
Monique Post has been living with post-COVID syndrome (Long COVID) for almost 3 years now, after contracting COVID-19 during the first wave of the pandemic in March 2020. She was keen to support other patients facing the condition and in May 2022 she became a part-time support worker for C-Support, a state-funded organisation that provides advice and guidance to people with long-term COVID-19 symptoms.
Monique lives in the south of the Netherlands and previously worked as a coach for young people with autism. She was used to traveling the world to give lectures and simultaneously taking on multiple freelance assignments. But in the first six months of her long-term COVID symptoms, she noticed that she had to stop every few meters when walking her dog. She had to hold on to trees to catch her breath.
Extreme chest pain, shortness of breath to the point of loss of consciousness, a feeling of crushing internal pressure in the brain, and slurred speech are examples of some of the 30+ Long COVID symptoms Monique is still dealing with.
Looking back at the beginning of her illness, she remembers how she was initially not taken seriously by the healthcare worker she went to for help – something she sadly hears all too often from the other Long COVID patients she now supports.
“My GP said I couldn’t have COVID-19 because I didn’t have a fever. I was experiencing acute shortness of breath even when I was just sitting and trying to talk to her. But I was told to just leave, that maybe I was just hyperventilating from stress. I staggered out of the clinic crying, knowing I was in danger and yet feeling so alone.”
Monique started working part-time for C-Support from home, informing and guiding patients over the phone. “It was great to start working with patients and making sure that every patient knew that they were being heard and taken seriously,” she says.
But even though she has Long COVID herself, Monique realizes that the art of listening is more important than relating everything to her own experience.
“It’s not possible to immediately understand someone else’s experience because they’re all so different. That person has to tell me what they’re going through, and I have to invest time in that, so that they can help me understand. Patients really feel the difference when they’re listened to. One patient told me that this was the first time she felt truly heard by someone. That’s so wrong.”
Although she enjoys what she does, Monique’s illness has at times affected her ability to perform her crucial new role. Last summer, her legs would suddenly give out for no apparent reason. Five months later, she also developed speech problems, dizziness, and Parkinson’s-like tremors that forced her to reduce her work for several weeks. These symptoms have now been reduced by about half, and she has been able to resume her previous work hours by making adjustments.
Looking ahead, Monique believes that a more coordinated approach to post-COVID syndrome would be most beneficial for patients. “We need to bring together patients and professionals from all over the world to tackle post-infectious diseases. We need to facilitate these meetings to encourage a cross-pollination of ideas before it’s too late. Only then can we make miracles happen.”
In the WHO European Region, at least 2 million people are thought to have had post-COVID syndrome in the first 17 years of the pandemic alone. WHO/Europe is working with Long COVID Europe, a network of Long COVID patient associations led by current and former Long COVID patients, to ensure that the condition is taken seriously by governments and health authorities. Together, they are promoting greater recognition and knowledge sharing, research and reporting, and rehabilitation.
