My college’s Homecoming is coming up quickly, and it feels like a cruel reminder of everything I have missed since Covid. Well, it’s not just homecoming that is giving me this aching feeling, but rather seeing what feels like everyone, enjoying weddings, bars, concerts, and simple indoor hang outs with their friends while I sit in the same room I have for over a year and a half. Although, I do have to admit the social media stories of college friends expressing their excitement for the upcoming weekend as well as the alumni sorority house crawl itinerary being sent out does have a particular sting to it. Before vaccines came out I felt like I had some solidarity in that most people were not able to enjoy those things either, but now it feels like my Instagram and Snapchat stories are filled with reminders of things I can no longer safely do. As much as I am happy for everyone who is able to get some joy back in their lives I can’t help but feel a piece of me chip away with every invitation I have to say no too, or even the lack of invitations. Which is definitely on me as I have become even more reclusive in my covid bubble.
I’m vaccinated with a booster, but the threat of getting a Covid-19 infection still lingers. And it’s not just Covid that I’m worried about. Despite my vaccine status, mask wearing, hand washing, and social distancing, if I get sick it could lead to a flare. That concerns me for two reasons:
- I am trying to get off my immunosuppressant (which is used to control my lupus), which means I have to try and stay as healthy as possible. The drug that I am on works, but it has a lifetime, so I can not stay on it forever, and if things one day take a turn I will need to be able to take it again.
- To put it bluntly, flares are bad. In college my body was in a constant war with itself. Any illness, Covid-19 or not, could cause a flare which is why I have stayed so diligent about being safe. I was constantly performing at 25%-75% of myself due to colds turning into chronic sinus infections and my chronic illness stacking on top of that. Lucky for me, while my flares were terrible, I did not have any organ involvement (aside from a kidney scare that ended up being okay). But who’s to say the next flare wouldn’t? Especially when fighting against something like Covid-19.
I’ve been spending a lot the past year and half living in the “what ifs”. And while I think most healthy 23 year olds think they can take their chances, especially if vaccinated, I cannot. I think it’s confusing for other people when I say I can’t go out and do things. I look healthy, I feel healthier than I have in a while, and I’m fully vaccinated. As much as it is confusing for others, it is confusing for me as well. Sometimes I wonder if it would be so bad if I went out and enjoyed a bit more of early/mid twenties. There are plenty of people I know who are at larger gatherings and have been totally fine, so I would be too, right? I don’t know, and I guess other people don’t either. Maybe I’m just more aware of the risks. Being healthy feels so fragile to me, and I don’t want to do anything that would jeopardize that.
When they first took away the mask mandate for fully vaccinated people it felt like a weight had been lifted. Not because I was going to take mine off, and was even advised to keep it on, but because it felt like maybe things would be getting somewhat back to normal. Maybe I would get to go out and enjoy a little bit of outside life. With this new sense of “freedom” I started to dip my toes back into normal life. I started by going into stores during slow hours, eating outside and distanced at restaurants, and even seeing a friend or two. Despite my excitement to get out there it all felt so unnatural. Fumbling in conversations with friends I had known for years, a rush of panic when someone would linger a little too close and little too long at the grocery store, and putting on and taking off my mask multiple times while trying to enjoy a dinner outdoors. I saw so many people almost effortlessly weave their way back into existence and there I was absolutely failing. I guess a year of basically only seeing my household members will do that. But then covid cases started rising, mask mandates were coming back, and the slight freedom I felt was gone.
Once I got my booster I felt a faint glimmer of hope. Hopefully being up to normal antibody levels would allow me to feel comfortable doing more things, and then a study came out saying the risks for people with lupus who got Covid, and I was terrified yet again. But while I sat there confused and scared, so many others were busy filling up their social calendars, going to concerts, standing in packed bars, and I was so jealous. So jealous that other people don’t have to constantly think about their health or worry that the one time they live a little on the edge could end up harming them for the rest of their life.
Aside from the physical distance I’ve created from people, I’m starting to notice emotional distance as well. I think people feel awkward telling me about what they’re doing. Maybe it’s because they know I wouldn’t or couldn’t participate or maybe it’s because on some level they feel guilty. I’ve noticed when people do share about whatever event they’re going to they tend to over exaggerate the Covid safety guidelines they’re following, like they want me to see that they’re being safe. I always try to tell people that if I was a typical healthy 23 year old that I too would be going out and seeing friends, but that doesn’t seem to ease their discomfort. And I get it, I probably would do the same if the situation was reversed. It’s like when I’m out to eat and there’s bread on the table, everyone’s enjoying it and talking about how warm and delicious it is. I can’t eat the gluten-full bread so I sit there enjoying everyone else having a good time. Truly not a bother to me, but inevitably someone realizes that I can’t have the bread and they immediately bring it to attention and start over compensating. They’re trying to make me feel better about not being able to have the bread by talking about how it’s not even that good, and while I appreciate their intent, it just makes everything feel awkward. I’ve come to terms with the fact I can’t have gluten, and I’ve come to terms with the fact not everywhere will accommodate that. The same scenario plays out when people discuss their plans with me in the wake of Covid.
I think there’s guilt in it for me too. I hate making people feel bad. Part of what stops me from talking about lupus, or being gluten free, or life during a pandemic is I know talking about my “normal” makes other people feel bad. When friends ask what I’ve been up to I see the instant regret on their face because I haven’t really been up to much. I usually make a joke about it, but it does little to ease the tension. From there I can feel them close off from me. Whether it’s right at that moment or later, like not Snapchatting me while they’re on a trip when usually we talk daily, and that just makes it so much worse. Not only can I not go out and have these experiences myself but others don’t feel like they can share those experiences with me.
I’ve had to say no to almost every single social event since March 2020. There are friends I haven’t seen since then, and I honestly don’t know when I will get the chance to see them next. I feel terrible having to say no all the time, I don’t want to say no all the time. Sometimes it’s almost a yes and then I see they were at a concert or crowded bar maskless and I have to tell them I won’t be able to make it. I worry that people think I don’t like them or want to spend time with them or that I think they’re irresponsible and have Covid. I want to make it clear that I don’t think those things about them, I just cannot put myself in potentially risky situations. Sometimes it’s other things, people invite me to a restaurant that’s not socially distanced, to go do an activity in the midday sun, or maybe they ask me to do something on a day when I’m just not feeling good. So much of lupus for me is fighting against something you can’t see and that makes it so much harder to understand. Having to explain to people why in the morning I seemed fine but at night I looked like I was barely there. Constantly having to reiterate that I am sick, but no I’m not that sick, or when they ask questions about my illness and just look at me like a puppy left out in the rain. Sometimes it’s hard to tell which is more exhausting: having lupus or telling people I have lupus. Now add a pandemic on top and it’s the perfect “sorry I can’t make it” sundae.
It feels like I’m in a constant state of grief. I flip from angry one day to resigned the next and on the worst days I’m just so sad. I think it’s important to allow yourself to feel those, but sometimes it’s an uphill battle to get away from them. It’s hard to grieve something that’s ever changing. I guess I haven’t really lost anything other than the potential to make memories and share experiences. And don’t get me wrong I have good days too, I have really good days. My boyfriend and family and some friends have helped to make this past year and half about the best it could be. But that also makes me sad sometimes, not because I don’t appreciate their love, but because I know they worry about me. I know they’ve all missed out on things to try and keep me safe. I so desperately want these people around me but an even greater portion of me wants them to go out and do the things I am unable to. I do not wish, nor want, anyone to live like Rapunzel in the tower for me, and while it may not be ideal right now, I am okay watching from the window.
Homecoming is a reminder that I cannot go “home”. Instead of catching up with friends I haven’t seen in years I have to fight through the pings of jealousy as I see friends and sorority sisters relive times that feel so close yet so, so far. It’s hard for me to reconcile the fact that while I sit here in this room debating whether or not it’s safe to go visit people I love, other people are eagerly planning their weekend of bar hopping and hanging out with strangers. It feels like there are no real guidelines so I’ve had to forge my own. I may not get to visit my college, visit friends in other states, or even enjoy a drink inside a bar, but there is a lot I would not have without this pandemic. It feels a little weird to say there are any positives that have come from something that has been so destructive, but it has allowed me to realize how fortunate I truly am. After four years of feeling like I was running with cinder blocks on my feet, I finally am able to catch my breath. Getting off my medicine was not even a thought before covid, but the healing that I have been able to do has made that possibility tangible. I’ve gotten to spend so much time with family that I never otherwise would have been able to have, and I’ve been able to make so many memories to put in place of the ones I feel like I’ve lost. I think homecoming hurts the worst because it reminds me of a time when I could think a little less about going into a crowded frat basement, and because it reminds me of all the people I haven’t spoken to since I graduated.
Cheers to everyone going to their homecomings and seeing old friends, hopefully I’ll be there next year.
Feel free to leave a comment below! I’d love to hear about your thoughts and reactions.