Disability Studies Quarterly Blog
Written by Alyssa Carbutti
The mask mandate in classrooms was lifted on Monday, April 4th, here at UConn. I have a lot of mixed feelings regarding masks being optional. Of course I want things to go back to normal but I don’t even know what “normal” is anymore.
Of course I want to see people laugh and smile on my college campus. Of course I miss having the intimate social interaction of looking at someone’s face while they look back at mine. Of course I want to lean in and whisper over my friend’s shoulder. I just don’t know what to do morally, or when it is enough to stop wearing my mask. As someone with an autoimmune disorder I feel very guilty to stop wearing one because I am very familiar with the fear induced at the thought of catching Covid-19. I also feel very guilty that I could possibly be ok with not wearing a mask because my disorder is in remission (hopefully forever). I’ve been really struggling within myself because if I was still immunocompromised I would NOT be ok with them lifting the mask mandate at UConn in the classrooms. I feel very hypocritical wanting to take my mask off. I feel like wearing a mask is a small thing to do in order to make someone else feel more comfortable and safe. It may be a choice for everyone to decide to wear a mask, but that choice could potentially severely harm or even kill someone who is immunocompromised. I don’t think it is really fair of the university to give students the choice to remove their masks in the classroom because it isn’t protecting students who don’t have a choice to remove themselves from that situation. It also isn’t fair to professors who can’t force the students to wear masks in their classrooms without university support backing them. Some professors are older, immunocompromised, or have loved ones at home who are immunocompromised or can’t get vaccinated, including little children.
When the virus first arrived in America I was in my senior year of high school. I was immunocompromised. It was really frustrating to hear adults tell me “oh you’re young and healthy you’ll be fine.” Nobody saw my disorder when they looked at me. Even when my symptoms were present I hid them very well. It was also difficult to know I was immunocompromised because my symptoms could pass off as a leg injury or knee problems. Only a select group of people around me even knew this part of my identity. I didn’t tell everyone because I was ashamed of it. I felt like I wasn’t “normal.” I have now grown to understand that there is no “normal.” I am just a very private person and don’t like sharing very personal things with a lot of people. I didn’t feel the need to tell everyone. It wasn’t going to achieve anything for me, and I didn’t want to be pitied. Especially on my soccer team in high school I didn’t want to be seen differently. It was also different when I became captain senior year because I wanted the girls to respect me and I didn’t think they would see me as strong. I partly didn’t tell anyone too because I didn’t want to have this “thing,” this bizarre part of me that consumed my life.
I didn’t want routine visits to get bloodwork or learn the hallways of the hospital from frequent trips to the rheumatologist. I didn’t want to learn how to self-administer Enbrel injections. I didn’t want to go through the daily struggle of being completely fine one moment and unable to walk the next.
I wish that I could erase the memory of my leg feeling as though it was engulfed in flames. I wish I could replace all those doctors and misdiagnoses with happier moments of privileged health. I wish I didn’t have all those nightmares and flashbacks, waking up in cold sweat. I wish I could erase the stabbing sensation as the doctor tried to put the picc line in, repeatedly failing while I was fully awake, nurses running in to hold me down. I wish my best friend wasn’t excited to learn about methotrexate at her university because she remembers me taking it. I wish I didn’t feel so guilty about being a success story. Part of me wishes I could detach chronic nonbacterial osteomyelitis from my identity.
It has taken me a really long time to get to where I am and I’m really proud of it. When the pandemic first started I went into complete isolation. Nobody was allowed in my house to visit and I wasn’t allowed out. I went for walks with my mom, but I had to wear a mask and if we ran into anyone we had to awkwardly tell them to social distance. I developed a severe fear of going out and potentially catching covid after around 2 months of complete isolation. I was really depressed and anxious from lack of socialization. While my friends all hung out and didn’t take such extreme lengths of isolating or social-distancing I was confined to the walls of my house mostly, and the fears of this unknown virus. This isolation was from March to the summer. I missed my 1 year anniversary with my boyfriend, and lots of events that should have been milestones. My 18th birthday was spent with my family at home. My mom tried to make it special, decorating and buying me a shirt to wear. It was a little bittersweet.
After the first couple months of complete isolation my boyfriend would come and sit across the yard, at least 12 feet away, and we’d talk. My mom would check from the window to make sure he didn’t try to hug me. She was really worried about me. She didn’t want me to die. Her anxieties manifested in me too on top of my already present fears. I am really lucky to have such a loving, caring boyfriend though who respected my condition and boundaries. It was not easy on him when I just suddenly went into isolation one day, unable to physically be there with him in person. It was very taxing on our relationship to be a few minutes across town, doing nothing, but unable to see each other. He was also experiencing this sudden change in daily life and the anxieties of covid and I felt as though I couldn’t be there to support him equally. He went out of his way to come and see me from a distance but I couldn’t go out of my way except for phone calls and text messages.
I slowly started going out little by little. She let me meet my friends for prom photos very hesitantly outside in May 2020. It was outside at the vineyard. I told them all about my autoimmune disorder ahead of time and they all agreed to wear masks. I was told there were only going to be about 7ish people there and we would distance but when I showed up nobody had a mask and they were all huddled talking. It was also closer to 14 people plus all their parents farther back taking photos. I just awkwardly stood there not sure what to do because I wanted to social distance. My boyfriend wonderfully had also been isolating so he could come near me and enjoy the virtual prom with me after at my house. This was incredibly touching to me because he paused his life and made that conscious choice to isolate in order to spend time with me. That was one of the kindest things anyone has done for me. I decorated the living room, hung pictures of us, and my mom cooked us a meal and pretended to be our waitress. He brought me a rose; it was cute. I felt really anxious, awkward, and weird standing alone on the lawn away from my friends. I wasn’t sure if I should leave. My mom was really mad at me because it wasn’t how I described it would be, but I was upset too. That made me feel really unseen and invalidated for my struggles. I quite literally felt as though my life had willingly been put at risk. Perhaps I should have known better because everyone was so excited to be together and it was prom. Even if a little part of me suspected that behavior I think I convinced myself otherwise so I wouldn’t miss out. I think I was at fault too because it felt risky even to go with masks. I also could have left the situation but I chose to stay.
I stood there feeling the world close in around me while they all shuffled together on the dock by the pond for an undistanced photo. My boyfriend and his mom looked at me and asked if he could join. This made me feel really horrible because it felt like I was holding him back. It also broke my heart that they were willing to continue to social distance to keep me safe even though all of our friends were there making memories mere feet away. My mom said yes. What else were we going to do? Then my best friend’s mom pushed me towards the dock and told everyone to take their masks off to smile, knowing I was immunocompromised. My mom was giving me a death glare. I felt peer pressured. I felt sad, mad, happy, anxious, and overwhelmed. My chest was tight. I wanted to leave but I also wanted to stay and risk it, but I was also risking my family and I felt guilty. Was it really my choice to take that risk? So many questions. My best friend also walked up and hugged me without a mask on after that which made me upset because she knew my fears the best out of anyone and wasn’t respecting the distance. It also felt so good to hug her. I really needed to just have that physical touch and I missed her so extremely. I can’t really blame her because I put myself in that situation and naturally of course my friends would want to see me. I also had just been on the dock without a mask surrounded by maskless people so she probably thought it was ok to hug me at that moment.
I slowly went out more and more that summer, mostly places outside. I carried Clorox wipes in my purse. I somehow convinced my mom to let me go on a group trip to Rhode Island, staying on the beach and eating at the house. I pushed the limits a little bit and ate outside at a few restaurants when I wasn’t supposed to. My anxiety was through the roof in Misquamicut. I made my friends go to the private, rockier beach, instead of the main busy one. I felt uncomfortable, it was too crowded. I hadn’t been around people in so long and I was already really scared to even be around my friends in the house we rented.
Some of our friends who didn’t come on the trip visited for a day and wanted to go out to eat. My one friend wanted to go to a 99 Restaurant really bad. We were supposed to eat outside but by the time we got there the outdoor seating was closed. I felt really put on the spot and went inside with everyone. I really wasn’t ready for such a huge jump. I sat down and it felt very dark and dingy. The table and booth felt sticky, the menus weren’t clean. There were a lot of people. Someone was coughing across the room. My chest felt really tight, I was paralyzed, I couldn’t speak. I just kept looking around thinking this is it, I’m going to get covid and die. I didn’t even notice tears were running down my face into my mask, my body shaking. Everyone was wrapped up in talking or deciding what to order. The only one who noticed was my boyfriend so he gently led me outside. My best friend noticed I was missing shortly after and came out to check on us. I started sobbing and gasping for air as soon as we got outside. They both comforted me and hugged me, telling me it was alright if I didn’t go back inside. My best friend placed our orders for us and we sat in the car and ate. That was one of the worst panic attacks I’ve ever had.
I thought everyone knew what had happened, but I found out a year later some of the people I was with misunderstood the situation for me just not wanting to eat there which is really hurtful because nobody asked me what happened. I didn’t know there was confusion. There is really not a lot of awareness of what people with autoimmune disorders are struggling with during covid on a personal level. Not even close friends or family understand.
Now, two years later and a sophomore at UConn, I just live my life and there isn’t as much fear of participating in activities or socializing. I made it on campus too after spending freshman year of college at home. This is partly because I am “better” and no longer immunocompromised, but mostly because little by little I worked through the extreme anxiety I acquired about covid. I still have lots of worry about covid and germs freak me out a lot but I’m in a much better place. I also got covid this semester unfortunately after all the extreme measures I took. That was a very scary experience in itself. I was in disbelief at first when the test came back positive. Then I went into full panic mode. My roommate also tested positive so thankfully we got to quarantine together. A black van came to pick us up which was very strange. I have heard stories of people with underlying or preexisting conditions getting covid and having their conditions present themselves after so I had this large fear that my autoimmune disorder would come out of remission. I do feel relieved having had the virus and thankfully not seeing my disorder reappear or having lasting symptoms, but it is still a very real fear that my disorder could come back.
This fear is another reason I think masks are still a good idea in the classroom. People could have underlying conditions that they might not even know about themselves or share the same fears as me. I don’t think it is another person’s right to decide if someone should be put at risk. Masks protect other people.
By Ally Carbutti
Worked on the DSQ Editorial team during the Spring 2022 semester as a DSQ intern.
This review was published as part of Disability Studies Quarterly, Spring/Summer 2022.
Beginning with Volume 36, Issue No. 4 (2016), Disability Studies Quarterly is published under a Creative Commons Attribution-NonCommercial-NoDerivatives license unless otherwise indicated.
Disability Studies Quarterly is published by The Ohio State University Libraries in partnership with the Society for Disability Studies.