Anke (47) lives with her partner and cat in Uden. She had a very physical job as a Visual Merchandiser in a store, which she filled as a true all-rounder. In addition to decorating the store, she did sales and filled in for the store manager when necessary. Sometime in the last weeks of March 2020, Anke fell ill. It was unclear what it was, as testing was not yet being done at all, but Anke immediately thought of Corona . “At one point there was a customer in the store; she sneezed quite heavily and you could see the sneeze spray swirling through the store. At that time, it hadn't really sunk in yet that you shouldn't come shopping if you didn't feel well. Colleagues also just came to work with a cold and coughing, even though the RIVM had already indicated that you should stay home if you had symptoms.”
Alarm bells
After a runny nose and a tickle in her throat, Anke quite quickly developed a heavy feeling in her lungs . “It was as if I had inhaled chlorine; I was short of breath and tight in the chest, and that’s when the alarm bells really started ringing.” That same week, shops across the country went into lockdown , meaning there was no immediate reason for Anke to call in sick. She planned to recover and then get back to work. But unfortunately, things turned out differently. “It was discussed that everything would reopen on May 1, 2020, but I was still sick. Mainly extremely 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 symptoms and showed little understanding. I went to the GP and was diagnosed with COVID based on symptoms. That was at the end of April 2020; I have been on full sick leave ever since.”
Big rag basket
Anke's illness fluctuates. For the first six months, she couldn't climb the stairs and the maximum she could manage was a five-minute walk. In the meantime, her symptoms have changed. “I have a lot of energetic complaints. I am very tired, so I sleep 12 hours during the day and also at night, but then I wake up tired again. My voice is hoarse, I have heart palpitations, shortness of breath, and low immunity, along with super severe headache attacks that can last up to a week.”
Broadly speaking, she has made progress. Anke can now climb stairs, walk for 30 minutes, and drive for 15 minutes, but it fluctuates a lot. On good days, she has to be careful not to push herself too far beyond her limits. And she has to weigh every activity based on her energy level every time. “I was always a very energetic and social person with a large social network. I now have an energy limit of a maximum of three activities. One activity, for example, is showering, and if I do that, I can't go for a walk that day because that is too big an activity. The fact that you can do so little is very heavy, not only physically but also emotionally. Overstimulation is a huge obstacle: sensitivity to light, sound, people talking over each other, etc. Then the battery runs out very quickly. And that has been going on 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 C-support, she signed up, and her aftercare advisor came into the picture in March 2021. “C-support mainly assisted with contact with the employer and my first company doctor, who really knew nothing about Long COVID. That man just wanted me back at work.”
Anke really couldn't work, but her company doctor didn't believe her. That caused problems and resulted in a lot of misery. For the first few months, she felt like she was truly on her own. “At one point, even though I indicated that I didn't have the energy to travel, the company doctor made me come from Uden to Dordrecht for an in-person consultation. Due to a lack of insight and knowledge, he really had no idea that it was asking far too much to make me travel for so long and come to the consultation wearing a face mask. Then to talk for an hour on top of that, and then go home in the same manner. I was literally hyperventilating right in front of him. That stress took a heavy toll and caused a significant relapse.”
That is why she wanted support during the conversations with the company doctor to prevent her from sliding further back, and she sought it at C-support. “An interim assessment stated more or less that I could go back to working for 4 hours; that completely distraught me.”
Anke's company doctor was supposed to base his judgment on feedback from her treating physicians. She called her psychologist and physiotherapist, but he had not sought any information from them. They both subsequently approached him with the message that working would hinder her recovery . “That is when he reversed his decision. Shortly afterwards, I got a new company doctor, but I immediately brought in C-support. I thought: 'that isn't 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 sick for a year, you end up on 'track 2' and have to reintegrate. And if that is not possible within your own job, or with your own employer, then you have to take on duties elsewhere. During the reintegration process, a work coach will draw up a profile with you that you could apply for. You can also work on your CV with that coach. Anke has been assessed for a commitment of 0,5 hours per day of light administrative work. For this, she has to apply for jobs weekly. Applying for jobs involves a lot of stimuli: writing a letter, being called by employers, rejection. All of that costs a lot of energy . “The job 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 companies and employees had to reinvent the wheel themselves. Shops went into lockdown voluntarily ; there were no splash guards, no face masks, and you had to pay for hand sanitizer yourself. In addition to healthcare and education personnel, a very large group of people fell ill while performing their work. A 'forgotten group,' such as retail staff, childcare workers, or truck drivers, who received little attention. They regularly faced aggression and a lack of understanding in their work. “The 'priority' given to healthcare providers and education staff feels unfair. They received protective equipment sooner and priority with testing. It is as if others were pushed into 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.
