Monique Post has been living with post COVID-19 Condition (long COVID) for almost 3 years now, having caught COVID-19 in the first wave of the pandemic in March 2020. She was keen to support other patients facing the condition and in May 2022 became a part-time support worker for C-Support, a state-funded organization providing advice and guidance to people with long-term COVID-19 symptoms.
Living in the south of the Netherlands, Monique previously worked as a coach for young people with autism and was used to travelling the world to give lectures while also taking on multiple freelance assignments. But in the first 6 months coping with long COVID symptoms, she found herself having to stop every few metres when walking her dog, finding it necessary to hold onto trees to catch her breath.
Extreme chest pain, breathlessness to the point of losing consciousness, a feeling of crushing internal pressure within the brain and failing speech are examples of some of the more than 30 long COVID symptoms that Monique is still facing.
Looking back to the start of her illness, she recalls how she was initially not taken seriously by the health worker she went to for help – something which she sadly hears all too frequently from the other long COVID patients she now supports.
“My general practitioner said that as I didn’t have a temperature, I couldn’t have COVID-19. I was experiencing acute breathlessness, even just sitting and attempting to talk to her, but I was told to just go away, that maybe I was just hyperventilating because of the stress. I stumbled out of the clinic crying knowing that I was in danger and yet so alone.”
Monique began working part-time for C-Support from home, offering information and guidance to patients over the phone. “It was brilliant to begin working with patients and to make sure that each patient knew 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 understand another person’s experience straightaway as they are all so different. That person needs to share what they are going through, and I need to invest time in that, so they can help me understand. Patients really feel the difference when they are listened to. One patient told me that this was the first time they felt really heard by anyone. That is so wrong.”
Although she enjoys what she does, Monique’s illness has at times affected her ability to carry out her vital new role. Last summer, her legs would at times suddenly give way for no reason. Five months later she also developed speech problems, vertigo and Parkinson–like tremors that forced her to reduce her working hours for a few weeks. These symptoms have now reduced to around half the time and she has been able to return to her previous working hours by making adjustments.
Looking to the future, Monique believes a more coordinated approach to tackling post COVID-19 condition would be most beneficial to patients. “We should bring patients and professionals together from around the world with the aim of tackling post-infectious disease. We need to facilitate these gatherings to encourage a cross-pollination of ideas before it is too late. Only then can we work wonders.”
Across the WHO European Region, at least 17 million people were believed to have experienced post COVID-19 Condition in the first 2 years of the pandemic alone. WHO/Europe is working with Long COVID Europe, a network of long COVID patient associations run 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.