Anke (47) lives with her partner and cat in Uden. She had a very physical job as a Visual Merchandiser in a store that she filled in as a true all-rounder. In addition to decorating the store, she did sales and replaced the store manager when necessary. Somewhere in the last weeks of March 2020, Anke became ill. It is unclear what it is, because there is no testing at all yet, but Anke immediately thinks of Corona. “At one point there was a customer in the store, she sneezed quite a bit and you could see the sneeze spray swirling through the store. It had not yet sunk in that if you did not feel well you should not come shopping. Colleagues also came to work with a cold and cough, despite the fact that the RIVM had already indicated that you should stay home if you had complaints.”
Alarm bells
After a runny nose and a tickle in the throat, Anke soon felt a heavy feeling in her lungs“It was like I had inhaled chlorine, I was short of breath and suffocated and the alarm bells really went off.” That same week, stores in the country went into lockdown which meant that there was no immediate reason for Anke to call in sick. She would recover and then get back to work. But unfortunately, things turned out differently. “It was discussed that everything would open up again on May 1, 2020, but I was still sick. Mainly very short of breath and I couldn't climb the stairs. My regional manager at the time thought it was strange that I still had so many complaints and showed little understanding. I went to the GP and COVID was diagnosed based on symptoms. That was at the end of April 2020, since then I have been fully on sick leave.”
Big rag basket
Anke's illness goes up and down. The first six months she couldn't climb the stairs and the most she could do was a five-minute walk. In the meantime, the symptoms have changed. “I have a lot of energetic complaints. I am very tired so I sleep during the day and also at night for 12 hours but then wake up tired again. My voice is hoarse, I have palpitations, shortness of breath and low resistance and in addition super heavy headache attacks that can last a week.”
In general, she has made progress. Anke can now climb stairs, walk for 30 minutes and drive for 15 minutes, but it is very up and down. On the good days, she has to be careful not to go too far beyond her limits. And each time, weigh all activities based on her energy level. “I was always a very energetic and social person with a large social network. I now have an energy span of a maximum of three activities. One activity is taking a shower, for example, and if I do that, I can no longer walk that day because it is too much of an activity. The fact that you can do so little is not only physically but also emotionally very hard. Overstimulation is a huge obstacle: the sensitivity to light, sound, people talking at the same time, etc. Then the battery is empty very quickly. And that for 2 years already…!”
Restorative care
Anke contacted her insurance company about recovery care, but that was too early. The insurance company had already decided to reimburse recovery care, but it had not yet been arranged. She regularly contacted her GP, but this was not allowed live due to the measures. As soon as a PCR test became possible on 1 June 2020, she immediately went to test for active infection. Until then, she had been in quarantine for more than three months, because the measures prescribed: 'stay at home if you have complaints'. She tested negative and registered for paramedical recovery care. She received physiotherapy and occupational therapy from June 2020, in September she received help from a psychologist and did mindfulness therapy and in January 2021 she went to speech therapy for voice, throat and swallowing problems.
Support from the employer
As soon as Anke heard about the existence of C-support, she registered and in March 2021 her aftercare advisor came into the picture. “C-support mainly supported me in contacting my employer and my first company doctor, who really had no knowledge of Long COVID. That man just wanted me to work.”
Anke really couldn't work, but her company doctor didn't believe her. That caused problems and a lot of misery. The first few months she felt like she was really on her own. “At one point, while I indicated that I had no energy to travel, the company doctor had me come from Uden to Dordrecht for a physical consultation. Due to a lack of insight and knowledge, he really had no idea that it was far too much to ask of me to travel for so long and to come to the consultation with a face mask. Then also talk for an hour and then go home the same way. I was literally hyperventilating in front of him. That stress caused a big blow and a major relapse.”
That is why she wanted support during the discussions with the company doctor to prevent her from sliding further backwards, and she sought this support at C-support. “An interim assessment more or less stated that I could start working again in 4 hours, which completely upset me.”
Anke's company doctor would make his judgement based on feedback from her therapists. She called her psychologist and physiotherapist, but he had not obtained any information from them. They both then approached him with the message that working would hinder her recovery.. “Then he reversed his judgment. Shortly after that I got a new company doctor, but I immediately got C-support there. I thought: 'that's not going to happen to me again'.
“The contact with the employer has really improved. We have contact once every two weeks and then I have nice conversations in which I feel heard and supported. The contact with colleagues has somewhat faded. People drop out and often do not know how to act. In addition, it is also very logical in a pandemic. Also, many contacts are too much stimuli for me, so it is good this way.”
Reintegration
If you are ill for a year, you will be placed on 'track 2' and you will have to reintegrate. And if that is not possible within your own work, or with your own employer, then you will have to pick up work somewhere else. During the reintegration process, a work coach will draw up a profile with you that you can apply for. You can also work on your CV with that coach. Anke has been assessed on a commitment of 0,5 hours per day of light administrative work. For that, she has to apply for jobs every week. Applying for jobs is again a lot of stimuli: writing a letter, being called by employers, rejection. All that costs a lot of energy. “The application task comes at the expense of something else. For example, I can no longer cook dinner in the evening.”
Forgotten group
In the early days of the pandemic, little was known and many businesses and employees were left to reinvent the wheel. Stores started operating on their own lockdown, there were no splash screens, no face masks and you had to pay for hand gel yourself. In addition to healthcare and education staff, a very large group of people became ill while performing their work. A 'forgotten group' such as shop staff, childcare workers or truck drivers, who received little attention. They regularly encountered aggression and lack of understanding in their work. “The 'priority' that healthcare workers and education staff get feels unfair. They got protective equipment earlier, priority with testing. It's as if others were pushed to the background.”
There has been a regulation for some time now to remain employed longer despite illness if the employer and employee reach an agreement about this. Employers can extend the term by 6 months, in the hope that their employees will then be better and can re-enter the workforce. In addition, the government wants to contribute to the wage costs for employers of healthcare workers. In this way, it becomes more attractive for these employers to use the existing regulation.
Trots
“I did need a few sessions to accept my current self. That process really made me stronger. I am happy with the level of acceptance I have and the peace of mind to be able to help others in this. I like to keep my compass on the development I can make. Perhaps that means that as an expert by experience I can do something for other Long COVID patients. I would like to follow a training in that. I have previously assisted people as a volunteer and helped them with a CV and job applications. That felt really good. I am positive about being able to build up my hours again.”
NB: After this interview, Anke's employer started the dismissal procedure via UWV. The dismissal is in the final phase, so she can now close a period of many agreements, evidence and long conversations. In the meantime, she has received the UWV decision that she will end up in the WGA for 80/100%. She is now going to look at how she can organize the coming period.
