Long COVID Support Group gives safe space and mental support to staff

You live with brain fog, short-term memory loss, ringing ears, vertigo, shortness of breath, anxiety and depression. Some days are good; some days you feel drained by 11:00 or 12:00 and then on another day, you wake up so tired that you don’t even want to get out of bed. This all happens amid pressures from managers who may feel frustrated with workers’ delayed recovery. These are some of the experiences of University of Cape Town (UCT) staff who suffer with long COVID. Relief, information and sharing have come in the form of the UCT Long COVID Support Group, an alternate weekly online gathering that provides an opportunity to get expert help.

Blanche Claasen-Hoskins, UCT Staff Wellness, Appointments, Benefits and Healthcare manager, said the group was formed under the guidance of UCT’s chief operating officer, Dr Reno Morar, as there was a number of staff struggling with long COVID symptoms and struggling to be productive.

She said various experts – such as occupational therapists, pulmonologists and psychologists – are invited to the group to share useful information with people who live with long COVID.

Dr Tony Davidson, an organisational health (OrgHealth) consultant to UCT, who is involved in the organising of the group and its functions, said their key aim is to provide support to participants who attend.

“Some participants felt uncomfortable at work, where demands outstripped their capacity to deliver.”

“Some of the support was clinical with health professionals, psycho-social support with therapists, and pragmatic support on how to cope with activities of daily living with a physio and an occupational therapist. Probably the most important support was the support participants gave to each other – the advice given was based on experience. As many of the experiences had similar themes, people felt less alone and isolated. This reduced the sense of isolation they were feeling. Some participants felt uncomfortable at work, where demands outstripped their capacity to deliver. OrgHealth provided advice on how people could approach their line manager, and if the employee felt it appropriate, we would discuss long COVID and its impacts with their line manager as well as create solutions,” said Dr Davidson.

Anxiety of long-term effects

Carmencita Kerchhoff, a residence coordinator at UCT, is one such staff member who was unfortunate enough to contract COVID-19 in an early wave and lives with long COVID symptoms.

“I contracted COVID in December 2020. My entire family had COVID. We lost my mother-in-law, and I almost lost my husband and mother. I nursed them during this time whilst ill with COVID myself ... I have no recall of these days and was on autopilot in caring for my loved ones. I recall my emotions during this time vaguely and with anxiety. Death and fear were constant companions and it was only my faith that kept me both sane and hopeful,” said Kerchhoff.

She now lives with systemic lupus erythematosus (SLE) and continues to participate in the Long COVID Support Group, feeling that it has been an invaluable source of information, care, and non-judgmental support.

“Pre-COVID I was a healthy non-smoking, non-drinking runner with no pre-existing medical conditions. Post-COVID my entire physical and mental health radically changed. I now have a permanent medical condition: high-risk SLE, and my forms of exercise are Pilates and walking my dog. Respectfully, hearing about others in similar or sometimes even worse situations, makes me both thankful and grateful. It has made me more intentional about dealing with others and myself with kindness and compassion,” said Kerchhoff.

“Very commonly mental health issues, depression or anxiety are among the long-term effects of long COVID.”

The unknown of the long-term effects is a cause of frustration for her, as much as it may be for managers.

“Having COVID is akin to experiencing trauma. We are just as frustrated and even more anxious by our delay in recovery than managers are. Be kind, show compassion and please be patient as we work on our recovery and well-being,” she added.

David Coetzee, an emeritus associate professor in the Division of Public Health Medicine at UCT, who is also involved in the working of the group, said that it is unknown how permanent the effects of long COVID will be.

“Very commonly mental health issues, depression or anxiety are among the long-term effects of long COVID but also brain fog and difficulty thinking or concentrating, headache, sleep problems, dizziness when you stand, pins-and-needles feeling, loss of smell or taste, joint or muscle pain,” he said.

A safe space to vent

Jolene Steenkamp, an events coordinator at UCT and a member of the group, said she contracted COVID-19 in August 2021, possibly when she removed her mask to eat at a family pre-funeral gathering.

“The day after coming out of isolation, my brother-in-law died of COVID-19 and I witnessed it. I somehow feel that this trauma has impacted my recovery as well. I still struggle to focus and multi-task. In my work environment, I make notes and set reminders because I tend to forget things. I also record our meetings so that I can go back and listen to it if need be. I have been seeing my doctors on a regular basis but because it is so new, they cannot do much. I am on anti-depressants and also started counselling to cope with the anxiety and depression,” said Steenkamp.

“It also gives us the opportunity to reflect, vent and speak about how we feel which we do not generally get to do in our own departments and faculties.”

The group has been providing her with information and coping mechanisms.

“It also gives us the opportunity to reflect, vent and speak about how we feel which we do not generally get to do in our own departments and faculties. Staff members are also assisted with discussions with line managers on the importance of self-care and slowing down in order to recover,” said Steenkamp.

Kareema Poggenpoel, an administrative assistant at UCT and a member of the group, said she deals with the symptoms by treating them as they arise, having a positive outlook and living a well-balanced lifestyle. She contracted COVID-19 in August 2020, during a time of losing many family members to the virus: her father, mother and brother-in-law.

“It was during [my brother-in-law’s] janazah (Islamic funeral prayer) that I started feeling unwell and immediately went home to isolate. My sense of taste and smell soon disappeared and I was tested the following day, with a positive result. Mom passed in hospital on 13 August 2020, during my isolation period. I can’t find words to describe this time in my life. Losing three loved ones so suddenly and in such a short time was and still is heart-breaking, to say the least,” she said.

She now deals with symptoms that only recur occasionally, and gains mental support from the group.

“I found myself in a group of people who understood my challenges – both physical and emotional, who could relate to me, and I could relate to them. The group made me feel heard, gave me a safe space outside my family unit to debrief and be vulnerable in a safe space. The group is an encouragement to all the members and a testament to Blanche’s ability to create a calm and emotionally safe environment among a group who started out as strangers.”

Staff can contact Claasen-Hoskins via e-mail to join the group.