Having an Autoimmune Disease During A Pandemic

Amidst the Covid-19 pandemic many people with autoimmune diseases are struggling with the changes in their life due to the extra precautions they now need to take in order to stay safe, a 23-year-old woman with diabetes delineates how she’s been handling these changes.

Note: for privacy, the individual’s name as well as the university name have been changed.

Emily Rodgers sits patiently at her school’s pop-up testing center, swinging her feet back and forth beneath her chair, waiting to get tested for the Coronavirus for the third time this semester. She looks around and notices that the other people who are also waiting to get tested are people from her class. Making it seem like this “random testing” wasn’t so random.

Someone starts to slide into the chair next to her and as she looks over, she sees that it’s her friend Danielle. Emily tells her to wait and she’ll wipe down the seat for her. She always carries Lysol wipes now-a-days just to take the extra precautions in order to not get sick. Danielle smiles and waits until she finishes wiping down the area. Others waiting to get tested stare, but it doesn’t bother her. She sits back down and sighs with relief being glad that it was someone she knew and had been in constant contact with since September. Better Danielle rather than a stranger who might have the virus or doesn’t take it seriously.

She looks over at her friend and mentions that it’s weird to see everyone from class when she thought the testing was a random selection. Danielle shrugs unknowingly. Still waiting to be called in, they both hear a loud continuous beeping noise. Danielle looks over and sees Emily starting to slightly roll up the bottom of her shirt in order to fix her insulin pump.

Smith was diagnosed with Type 1 diabetes at eleven years old and has been living with those lifelong changes ever since. “For me, my body attacks the insulin cells, meaning I don’t produce any insulin because my body attacks them before they’re produced. It also means that my immune system is compromised constantly, so my body doesn’t handle certain things as well, compared to someone who doesn’t have an auto immune disease,” Smith said. These would include things like the common cold, the flu, or other sicknesses that are present in society.

Rodgers remembers the day she was told she had Type-1 diabetes at age eleven. It was a diagnosis that changed her life. Before her diagnosis, Rodgers was an active kid. She played on multiple sports teams throughout her early years of school. Such as soccer, baseball, track and cross-country. She also loved cake and bread like any young kid does, but those were all things she could no longer eat as much or do any longer. Multiple areas of her life had to be changed and adjusted to make sure she would stay healthy and not go into diabetic ketoacidosis which can be life threatening. To make sure she was taking care of her body she soon had to learn to be aware of what carbs she ate, as well being conscientious of how what she ate overall and how it was going to affect her. “I also had to get really good at math because you have to count and calculate to be able to adjust everything to how it’s supposed to also decide on how much insulin I have to give myself,” Rodgers said.

Quitting the sports teams that she loved being on so much, hit Rodgers hard but it had to be done. Physical activity has a big impact on blood sugar levels, and it was too early in the diagnosis to be able to tell how her body would function differently. Trying to learn more about her new condition, Rodgers had back-to-back doctor appointments scheduled and ended up missing a whole month of school because of it. Having diabetes also meant that simple colds or seasonal flus hit Rodgers particularly hard. “For a long time in the beginning I felt alone because my friends didn’t understand anything I was going through. They were scared to be around me and acted like I was a porcelain doll.”

She soon grew to hate birthday parties because she couldn’t eat the cake or food her friends had laid out. “I remember the first birthday party I ever went to because I had a horrible time,” Rodgers explained. “The place that the party was at didn’t have any diet soda for me to drink. They only had one kind of pizza which I couldn’t have and so while all of my friends were eating, I was sitting there watching them and starving.” She went on to say, “I felt excluded from everyone, even if they weren’t trying to make me feel that way.”

Now that she’s lived with diabetes for twelve years, Rodgers is much more educated than she was before and knows how her body is going to react to certain things. “Over the years technology has also advanced and has made it much easier for diabetics to live a normal life and not be excluded as much,” said Rodgers, “Getting diagnosed at a young age made me grow up quicker than other kids but it also made me a stronger person overall.” But now Rodgers has had to learn to adjust her life once again. This time, in response to COVID-19, the brutal virus that hit the United States in March.

In the United States alone there are more than 24 million people that have an autoimmune disease. That means, there are 24 million people for whom COVID-19 poses a much more, even terminal, risk. “I’ve already had to change my life when I got diagnosed with diabetes. Now with the pandemic I have to really watch everything that I do. Which means taking extra precautions that might seem silly to others but could be life saving for me,” Rodgers said.

Many others with the disease are in the same situation as Rodgers right now. Covid cases are still continuously rising in the United states but are especially high in Wisconsin. Right now, there has been a total of 293,388 cases just in Wisconsin alone with a positivity rate of 33.25% as of November 2020. This puts people with autoimmune disease in particularly precarious positions.

Rodgers is constantly in contact with her doctor and now, with the pandemic going on, she is in contact with him more than ever. “I contact him whenever concerns arise,” says Rodgers. “With the on-going pandemic I’ve been talking to him every couple of weeks just because it’s a higher risk situation for me. If I contract the virus, we don’t know how much damage it could cause. I’ve been told it’s very likely it could end fatally if I do get it.”

Just as her pump stops beeping; Rodgers gets called into the testing room. Woodale University does their testing differently by getting a saliva sample instead of doing the nasal swab test that most free-testing centers do. She spits into the tube a few times, hands it back to the worker, and leaves. The test is over and now it’s time to wait for the results. She doesn’t think she has the virus because she goes so much out of her way to not get sick yet knows there’s always a chance that it could happen.

Multiple schools in Wisconsin decided to go either fully online or do a hybrid style for the Fall 2020 semester. Rodgers’s school on the other hand, had decided to have still hold in-person classes since the school only has about 300 graduate and undergraduate students combined. This has made it difficult for her because since she can no longer control everything like she could over the summer months. During the summer she stayed home practically all the time. Never being allowed to leave the house unless it was during a time her parents knew would have less people out. Being back at school she doesn’t know who her classmates have been with, if they’re going out to public places, or how they’ve been taking precautions from the virus, if any.

“When I must sit somewhere that’s in a public space at school, I’ll wipe that area down before I sit and will also wipe it down for the next person as well. And of course, I’m always wearing a mask too,” she said while heading to her next class.

As a social work major, Rodgers is required to have 175 hours of service completed by the end of the semester. So, there’s no way out of going to an in-person internship if she’s expecting to graduate on time. At her internship she works with the low income and homeless population doing client intakes, helping clients get food, clothes, and any other necessities they may need. The job brings additional stress. Rodgers is constantly surrounded by strangers from high-risk areas. Of course, there are regulars that come in too but once again it’s the fear of not know who these people have been around, if they are taking any precautions, or if they even believe in the coronavirus.

“I wipe down my keyboard every time before touching it and always keep my distance from others. I had this one instance happen where a woman and her five kids came in wanting help right away. I was dealing with another person who came before her and told the woman that I would be right with her. She kept inching closer to me and I would move back asking her to keep the distance because with my autoimmune disease I have to be super cautious. She ended up getting upset at me because I was taking too long and ended up grabbing me to get my attention. That’s when I freaked out and told her to never touch me and please respect my space. I had to go outside and take a break from everyone after that because that could’ve just ended it for me.”

She found out later after coming back inside, that the woman didn’t even believe in the virus, calling it a hoax. Rodgers put on some hand sanitizer and tells her that everyone has their opinions, but she can’t chance anything. Her internship gets about 60-90 people coming in per day. With a high number of people like that coming into a building the size of a McDonalds lobby area, Rodgers tries to stay calm and take all the precautions she can. “I am constantly washing my hands, which I guess is something I didn’t do as often before. I also use my hand sanitizer a lot between interactions with people or after touching things around the facticity. I would say I do both of those about 40 times or more a day,” Rodgers said.

It’s the weekend now and she’s spending it at home. Her parents are outside cleaning up the fallen leaves in the yard and she’s inside with her sister Reagan and the families four dogs. She decides to call up her friend Teddy and invite him to come over, after her parents said it was alright. He’s only allowed over if she knew he was taking the right precautions and has no symptoms for at least 14 days. Her life hasn’t only changed at school and work, but also at home as well. “A big thing that’s changed is that I used to see my friend’s multiple times during the week,” she said, “now I see them maybe once every two weeks if I’m lucky.” She sighs, knowing it’s for the best but sad that it’s got to be that way until for foreseeable future.

Her dad comes in and asks her a bunch of questions about whether Teddy had been wearing his mask, washing his hands, and taking the right precautions so he doesn’t bring anything into the house. She answers him and then looks down at the ground. “My life at home is kind of annoying because my dad is super paranoid with the whole Covid thing. I don’t think he’s wrong for doing that but it’s just annoying that he doesn’t trust me when I tell him that my friends are doing everything they can to not jeopardize my health, and theirs as well. I always have to prove my point many times before I get approval to see anyone. I feel locked in here and that my independence has been taken away.”

Teddy arrives and the dogs go crazy with excitement to see a friendly face. He comes inside and he and Rodgers sit down on opposite ends of the living room to play the Nintendo switch. Keeping their distance, they talk about the game and who’s going to beat who. “It’s been really hard going from seeing Rodgers constantly during the week to barley at all. I get it, but it just really sucks,” Teddy said while looking at her from a distance. “It’s a really serious virus that could potentially kill her if she gets it, so I’ll definitely take the extra precautions in order to make sure she stays safe,” he said.

Rodgers explains that she has gotten many weird looks when being out in public and taking those extra precautions in order to stay safe. Some have even confronter her about it, but she shakes it off because it’s just what she has to do from now on. “She’s strong,” said Teddy, “people just need to realize there are people out there like Rodgers who have an autoimmune disease and need those extra precautions because they are high risk, and it could be a life-or-death situation for them.”

Rodgers wipes down the inside of her car after taking Teddy home, talking about how it’s hard having an autoimmune disease especially during a world-wide pandemic like this. Her life’s been flipped upside down and has added more stress and worries about her health. “I’m always trying to take all the precautions I can to not get the virus. I’ve been told multiple times by my doctor that if I get it, it probably won’t end well for me.” Many are unaware of how important it is for some to take these extra precautions and how difficult it’s been for people like Rodgers.

Her phone buzzes lightly, notifying her that she’s received an email. She logs in and sees it’s from her school. It’s the results from her coronavirus test. Rodgers clicks on the link and sighs with relief, it’s negative. With having in-person classes, her school really needs to be on top of things like this. Students and staff are required to sign a legal agreement called the Spartin contract, which states that if someone at the school gets Covid or if they have symptoms, they’re supposed to call in and not show up to any classes until they’ve either gotten another Covid test and it came back negative or have quarantined for 14 days. “Yet, I’ve noticed in my classes that they don’t really follow through with that. I don’t feel as safe as they promised we would feel, which is disappointing,” Rodgers said.

Sitting on her porch with her four dogs at her side, Rodgers observes the traffic. One day, she hopes, she’ll be a passenger in one of those cars, living life as she once did. But for now, she stays on her porch and watches as they drive by.

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