‘A world filled with precaution’ for the immuno-compromised
“People thought I was one of those doomsday preppers when all I was doing was trying to protect myself,” says Retha de Wet, speech-language therapist and Myasthenia Gravis patient .By Dalaine Krige
When Wendy Suter was diagnosed with cancer, her world came crashing down. As a 49-year–old mother of two, she excelled as senior project manager at a tech company. While she loved her job, her diagnosis forced her to take a step back and re-evaluate her life.
She never thought that she would be managing her already fragile health during a global pandemic.
She was diagnosed with triple negative breast cancer a week after finding a lump in her breast and started chemotherapy within two weeks.
“I didn’t really have time to process it because of the aggressiveness of the cancer,” she says. “I was just on a rollercoaster. I had to stop working straight away because it was intense chemotherapy.”
Covid-19 has sparked global conversations about the burden of healthcare and who should be prioritised during a pandemic. This discussion, however, can be traumatic for people dealing with a chronic health condition that leads to them being immuno-compromised.
According to Professor Adrian Puren, divisional head for the Centres of Vaccine and Immunology, Respiratory and Meningeal and Enteric Diseases, an immuno-compromised person is someone whose body has a reduced ability to fight off and recover from infections. This could also be due to a chronic condition, age or medication that they are taking.
“Just as I found my feet again and was able to go out and do things like shopping, it had to stop. Now I’m stuck. The sum total of me going out is to the doctor and home again and to the doctor and home again,” says Suter.
During lockdown, she visits the oncology clinic near her home, and while pre-lockdown she could take someone in with her for support, she now has to go in for treatment alone and practice social distancing while there.
“There’s no camaraderie or talking. It’s become very lonely and it’s weird,” she says. “No one talks to each other, everyone is wearing a mask, everyone is distanced quite far away from each other. Even your oncology nurses that have been looking after you all wear PPE (personalised protective equipment). So, you don’t have that personal relationship with them.”
While her friends and family have rallied around her over the past year, she says: “I do feel like you go through these kinds of illnesses on your own, despite a strong support system.”
Loss of normalcy
Thirty-year old Sasha Star was born with Spinal Muscular Atrophy, which has left her wheelchair–bound due to muscle weakness. Basic tasks require much more effort on her part, meaning that she tires quickly.
But her condition has not stopped her from living a full life. She’s worked in radio for more than six years and now maintains four different freelance jobs – daily content writer, social media manager, television producer and correspondent; and motivational speaker. On top of this, she founded a community non-profit organisation for LGBTQI youth.
Star says that the Covid-19 pandemic and the subsequent news coverage has left her shaken. “No one wants to be reminded that they are vulnerable or weak,” she says. “It is even scarier to think what would happen if I caught Covid-19, so I have refused to allow my mind to go there.”
She says it is jarring to grapple with the loss of normalcy. As an extrovert who is usually out-and-about, staying at home for her own safety has been an adjustment. The extreme self-isolation is necessary because she gets pneumonia every year due to her vulnerable immune system and weakened chest muscles.
“This usually results in a hospital stay that can last anything from a few days to three weeks,” she says. “To prevent getting sick this year, I began quarantining even before it was legally imposed, and have avoided all people other than those I live with, and take immuno-boosting vitamins daily.”
Retha de Wet is doing her community service year in a public hospital as a speech-language therapist. It took her five months to find a placement close to her support system. “I can’t live on my own,” she says. “I need support. Some days I fall asleep at 5pm and barely wake up for work the next morning.”
De Wet has a rare neuromuscular autoimmune disease called Myasthenia Gravis (MG), which leads to the body’s immune system attacking the muscle receptors responsible for receiving nerve impulses. She was diagnosed at the age of twenty during her first year of university, after several misdiagnoses over the course of two years.
De Wet’s specific type of MG is generalised to all her voluntary muscles and affects her swallowing, speaking, breathing, arms, neck and diaphragm. Despite having an autoimmune disease which is resistant to treatment, she continued her studies and finally graduated in 2019 after seven years.
“At one point in time, chemo was the only thing keeping me alive,” she says. She underwent 17 rounds of chemo before switching over to an immuno–suppressant drug called ciclosporin.
She has not been self-isolating during lockdown because she has to work every day. When news of Covid-19 broke, de Wet was terrified and started wearing an N–95 mask to work.
“This initially led to snickering behind my back from patients and colleagues,” she says. “People thought I was one of those doomsday preppers when all I was doing was trying to protect myself.”
While she initially felt isolated, she now feels a strange sense of belonging. “It felt like the rest of the healthy world had entered my world,” she explains. “A world filled with precaution.”
‘Step outside of yourself’
According to Prof. Adrian Puren, one of the consequences of immunosuppression is that an individual is more susceptible to infections because the immune system is less able to mount an adequate response. Often people who are immunocompromised don’t look sick.These misconceptions often stem from a lack of education around the different types of disability and lead people to assume that people are healthy because they seem young and healthy.
Both de Wet and Suter urge the public to wear masks when outside. “That feeling you get of being ‘over it’ when it comes to wearing your mask? That’s privilege. A privilege I would give anything to have,” says de Wet.
“Protect yourself and protect others,” adds Suter. “Step outside of yourself and look at the pandemic from someone else’s perspective”.
Star hopes that, aside from wearing masks and sanitising, people reach out to others to check-in during this time. There are people who feel that they are caught in a battle of life and death who would benefit from a message or phone call.
“Remind people they’re not completely alone during this incredibly isolating time,” she asks.
Puren echoes these sentiments and encourages everyone to practice good hygiene and social distancing. For the elderly and those who care for the sick, he recommends getting the flu vaccine.
By showing social solidarity, problematic notions that inform and fuel ableism in our societies can be dismantled and unpacked. Instead of ‘othering’ those who are ill, their lives can be recognised as inherently valuable and worthy of protecting. – Health-e News