This story is part of a collaboration between Central Connecticut State University and University of Central Lancashire.
Before COVID-19, Fiona Steggles, who lives in Burton-in-Kendal, Cambria, England, used to have a regular appointment with a kidney dialysis nurse. Now, she has to have those appointments over the phone.
“I don’t have them anymore because it’s too dangerous for me to go into a hospital than to stay at home,” she said.
Steggles has a rare condition, Cryoglobulinemia, which affects her immune system, attacks her major organs, and has caused kidney failure. She has been in the hospital twice since the coronavirus pandemic started, once for an MRI scan and another time for a biopsy. She also had to talk with her doctors about whether it was more dangerous for her to go into the hospital or to not have the scan she needed.
“There was a lot of discussion about what was more risky to me,” Steggles said. “In those two cases, we decided it was safer for me generally to go into hospital, but even so, the hospital staff have been very good at recognizing the risk to m. Both times I have gone in early in the morning before anyone else is around.”
Steggles was also waiting for a kidney transplant. Since the COVID-19 outbreak, all transplants have stopped and she has to wait even longer to get a new kidney.
“That’s a very big deal for me because suddenly in the UK, one person dies every day from waiting for a transplant and all transplants have now stopped so a lot of people on that list are in that pool waiting for transplants and lots of people would have died,” she said. “I do not want to wait too long for a transplant and that has been a big issue for me at the minute.”
The United Kingdom’s government announced that about 1.5 million people were considered to be the most vulnerable in the country. Steggles is one out of those 1.5 million citizens and was given instructions to help protect her.
“Our government has told me that I will be isolated at least until the end of June, which will have been three months,” she said. “Because of that, they told us to even try to isolate ourselves from our families so even though we are living in the same house, I am living in separate rooms to my husband and my sons.”
Although she has to be isolated from her loved ones in order to ensure the safety of her health, Steggles says she is content with it and understands why this is necessary for her.
“I know that if I catch COVID-19, realistically I will probably die from it… so I am quite happy to stay in my house and room for now,” she said.
She shared she’s already used to being away from family because of her kidney dialysis.
“From a sort of psychological point of view, for me, I am quite isolated anyway because of my illness and because I have to be on dialysis five times a week,” Steggles said. “Actually, it’s quite interesting to see other people be isolated and for them to realize what it’s like to be sat in a room for a long time.”
Steggles says she is thankful for the services that the medical staff has provided for her and says that living in the United Kingdom is better for her in terms of dealing with finances for treatment.
“With the British National Health Service, I know that whatever happens I will be able to get care and to be looked after and get whatever medical treatment I need without having to pay for it without worrying about insurance,” she said. “I know that if, for example, I were to move to the United States now and try to get insurance, I would really struggle to get insurance because of the huge number of medical issues I have.”
Antonio Orriola lives in New Britain, Connecticut and works for the city in its parking division and is the chairperson for the Commission on Persons with Disabilities. Orriola, 31, is also a little person, who is three feet tall. He has Achondroplasia, which is a type of dwarfism that causes a person to have short arms and legs as well as potentially causing smaller face compared to the size of the skull.
“There’s just some stuff I can’t do like I can’t get out the door, I can’t get out of the bed, I get tired of walking long distances,” he said.
Orriola said that he recently had to get surgery in his neck because he has Scoliosis in his back. When it came to talking about whether or not he would go to the hospital during the COVID-19 outbreak, Orriola said that he would prefer to stay at home because he would feel uncomfortable going to a hospital alone.
According to the Centers for Disease Control and Prevention (CDC), people with physical disabilities aren’t automatically at a higher risk of infection when it comes to COVID-19, but they can beat greater risk with specific medical conditions that have to do with the heart and/or lungs as well as a low immune system.
“I would rather stay home and be sick and not go to the ER because I know if I go to the ER, I will be by myself. I wouldn’t be able to bring my caregiver with me,” he said.
Khadija Wali, a Biology major student at Central Connecticut State University, has a friend that had both of his legs amputated as a result of a war in Syria. She said she has learned more about the struggles people with physical disabilities have to go through prior and during the COVID-19 pandemic.
“It helped me to become more considerate and sympathetic and become more aware of certain things that I take for granted such as walking,” she said.
Wali said that she thinks that those who have to rely on a caregiver are more at risk of contracting the virus and might have more struggles because a person’s caregiver cannot always be there for them during the pandemic.
“As an individual who is abled, I have the luxury of being able to abide by those rules. However, individuals with disabilities, especially physical disabilities such as lacking mobility who might be more dependent on a caregiver to provide them their necessities,” she said.
Wali said she thinks that people with physical disabilities will manage the change of life better if they live with their families.
“I definitely think for sure that individuals who have disabilities, especially during this time will need their family support system and I say that for sure because the individual I know who has a disability is able have this pandemic be less of a negative impact on their life just because they have this strong supportive family around them,” she said.
This is the case for Steggles, whose husband and sons are able to help provide meals for her from the hallway in their home.
Orriola said he is unable to live his life normally on his own because he is currently living with his parents.
“I need help 24/7 so I can’t live by myself… I need to be with someone because I can’t depend on myself,” Orriola said.
Jianglin (Freeze) He, from the University of Central Lancashire, contributed interviews.