From denial to underestimation
Rianne Hermanns had been an aftercare advisor at Q-support for several years when the first post-COVID patients presented themselves to the hastily established C-support in 2020. We are now more than four years and approximately 35.000 registrations further. Rianne, now team leader, looks back on a hectic period and outlines the developments.
“Looking back can be done on two levels,” Rianne believes. “Social developments and the personal process that patients go through. Because although that is different for each individual, you can discover different phases in it.”
Social developments
Rianne: “In the beginning, corona was underestimated and dismissed as a flu. When the ICUs filled up, all the attention went to that. No one paid attention to the long-term consequences. We knew better based on our experiences with Q fever. That is why we switched very quickly and set up C-support. Many people became ill at home, felt extremely short of breath, and hung out of the window gasping for air. Others had a milder course. But the complaints they were left with were not taken seriously. Dismissed as trauma or burnout. But Q fever patients knew better. They were very worried and many contacted us. It only slowly dawned on us that large groups of people could suffer from very serious complaints for a long time. We now know that there are more than 450.000 post-COVID patients in the Netherlands, of whom around 90.000 suffer from very serious complaints.”
Contamination remains a risk
“We had five aftercare advisors in the fall of 2020,” Rianne continues. “While we received 500 registrations in one weekend. We worked extremely hard to accommodate the influx of patients. We now have more than 80 aftercare advisors. Those first patients were so happy with the recognition they received here. People with a full working week, who now barely managed to empty the dishwasher and yet were not believed. C-support has played an important role in putting post-COVID on the agenda. In society by seeking a lot of media attention, but also directly with all kinds of agencies, administrators, politicians and professional groups. Think of the UWV but also of family doctors and occupational health doctors and employers. We already had many of those contacts through Q-support. We sought discussions with them early on. Our medical and aftercare advisors have provided training courses throughout the country and still do. Post-COVID is now a well-known condition. But even now, corona is again being dismissed as a flu. While we are still receiving registrations. In 2024, more than 4.000. Contamination remains a risk that should not be underestimated.”
Individual process
Although each individual case is different, Rianne does see parallels. “In the first wave, there was mainly a lack of understanding. People had a lot of questions about their health and a lack of knowledge among professionals. You could also see that in the well-intentioned paramedical recovery care, which yielded little because there was little knowledge of the condition. Fortunately, things are going better now. There is more understanding, the treatments are more appropriate, but the complaints remain. The course is erratic, some complaints disappear and new ones arise. That makes people insecure and leads to many questions. Later in the process, you see other problems arise. Then there are many work-related questions about how to deal with the employer, occupational health physician and the UWV. We support them with that. The financial problems also increase over time. That leads to a lot of stress and is not very conducive to recovery. Social life collapses. People cannot participate in social events and become isolated. Many have difficulty with the activities of daily life. Sometimes showering is difficult, cleaning and cooking is not possible. Some are severely disabled. How do you do that if you live alone? And can you ask all that care from a partner? Quite a few relationships fail. The lack of perspective also plays a role. What will happen if I don't get better anymore? Psychosocial problems often arise in that phase. We also call that "living loss". It is very difficult to be confronted daily with what you have lost, with what you can no longer do. Then questions of meaning come into play. In all these phases there is the personal aftercare advisor, assisted by the medical advisors. They offer a listening ear, advice and support in all these areas."
“Post-COVID turns your whole life upside down!”
More than four years after his infection with corona, Paul Krijnen (56) looks back on the consequences. His entire family became ill in December 2020. But while his family picked up the thread of life again after a week, Paul stayed in bed. A place where he still spends a lot of time.
“I stayed home for two weeks,” says Paul. “Then I thought I could go back to work. But that was not possible at all. And while my condition continued to deteriorate, the occupational health physician thought I could work more. I was sent from pillar to post. Then I contacted C-support. My aftercare advisor supported me tremendously and accompanied me to the discussions with the occupational health physician. C-support also supported me when my employer offered me another job that was far out of my reach and threatened to dismiss me for refusing to work. Ultimately, after two years, it resulted in a settlement agreement and an assessment by the UWV. I also had those discussions together with my aftercare advisor. It is very nice to have someone at your side who can explain well what post-COVID is and what it does to you. The end result was that I was declared completely incapacitated for work. That gives peace of mind, but is also very confronting. I loved my job as an aftersales manager at a major car brand. That was now definitely over.”
Learning to cope
In those two years, Paul did everything he could to get better. He used the physiotherapy scheme twice. But when it didn't produce any progress, he stopped. "Occupational therapy taught me to distribute my limited energy better. Do something useful in the morning and sleep for four hours in the afternoon, to this day." Paul took part in a study by the UMC Amsterdam that should provide more clarity about post-COVID. "That consisted of various scans and a psychological examination. The latter in particular was intense. My memory and concentration were downright bad. A lot of exercises just didn't work. That was emotional. Since then, I regularly visit a psychologist, mainly to brainstorm and learn to deal with the consequences of post-COVID. Learn to accept what it is like. Post-COVID turns your whole life upside down."
Loss
Because it doesn't stop at the loss of his health and his job. Paul's marriage is also on the rocks. "That's sad. Also for my children. They are now 19 and 22. You can't be the father you want to be. A day out is out of the question, because dad has to sleep in the afternoon. You also lose out socially. People don't understand it, don't see it in you. You'd be better off having your leg in a cast."
Still, Paul tries to get the most out of it. “I am now at 50% of my old level. I had hoped for more, but I am happy with what I can do. I have found an employer who wants to take the risk with me and where I work 16 hours a week. Who also accepts the unpredictability and capriciousness of this disease. That makes me feel really good. You want to make yourself useful. I realize that it could be so much worse. Fortunately, I can still do something!”
