Ryan Roach: What is your name and how do you identify?

Rebekah Urban: My name is Rebekah Urban but I go by Becca. My pronouns are she/her/hers. I am a white female who is 23. I am bisexual. I am disabled. I have an autoimmune disorder and I am currently healing and in recovery from facial osteomyelitis and trigeminal neuralgia in my face.

RR: What has your experience been like during the pandemic?

RU: Confusing and limiting and enraging, but very empowering in a way I did not expect. It was interesting because I couldn’t see another person except for my parents for, like, eight months. And I was sort of prepared for how isolation feels because, over several years, I’ve gone through periods where I’ve literally dropped off the map, and I’ve been just totally alone. Just feeling sort of like a prisoner in my own body. That’s very isolating.

But for the first time, the world sort of went on pause and it wasn’t moving around me. I could actually take a breath and, all of a sudden, there were a lot of people in my life understanding how it feels to be isolated, and sort of having to phone into the world from home. They sort of understood me better than they had in a really long time, or ever could have before.

So it kind of felt awful because there were really positive things happening in the midst of all of this with the world on pause. I finally got the treatment I’d been seeking for a really long time, and I was starting to get better, but I couldn’t go out into the world, and there was all this horrible stuff happening. There were a lot of blessings in disguise for my personal story. So there was a lot of back and forth with myself on, “What are the ethics of validating my feelings right now, or talking about it?” But I would never wish for people to understand how I feel, because that would mean they have to go through deep bouts of loneliness and feeling disabled and knocked out of their regular life. And I would never wish that upon anyone, but it happened anyway, and I felt kind of crappy about being understood. Because I knew what was causing people to understand me, you know? And that kinda sucked.

Even with that said, no one really understood. I had a lot of friends that were not following the rules, and things like that. And it’s hard because they know you so well, like, they’ve known someone with a chronic illness for a long time, and they’re still putting that same community, and essentially, you, at risk by acting a certain way. So it definitely felt very controversial as well with all the political stuff. We were already putting ourselves in positions to have uncomfortable conversations in order to have a better outcome for everybody. It was kind of wild. It’s hard to understand the amount of danger that some people, like me, were actually in. It was odd.

RR: What has your day-to-day been like during the pandemic?

RU: It’s sort of gone from night to day because of my experience as someone who is chronically ill. I’ve been misdiagnosed and in severe chronic pain every day since I was 16. And about three years ago, they found an infection which they didn’t believe me about. They were not treating me. I had an atypical reaction, and it was really hard to get people to understand and believe me. I had six root canals, and then they all failed. I had to get all those teeth removed and I was literally, at one point about a year and a half ago, septic, and then again about two months. I didn’t know if I was gonna make it because people weren’t paying attention. They weren’t really believing what I was going through. So it was kind of insane that right as the pandemic exploded, I was put on this new treatment that ended up saving my life. But I went from being completely sedentary everyday in constant pain, completely medicated, going to the ER at least once a week, to where I am now learning to exercise again. I just got checked off with all my blood work and everything is more normal. I am no longer considered immunocompromised. I can go out of the house. I’ve had a little snippet of a view into how it feels to be going through the pandemic in five majorly different phases of being sick. The phases for me have been existing as someone that is literally bedridden and in the hospital all the time, someone who is being treated, has a PICC line and lots of medications but still trying to do life, and then as someone that is trying to recover and dabble in regular life, and then as someone who is trying to heal, let go of the past, and just survive. They come with different experiences, of course, and it’s been a process.

RR: I know you had a handful of hospitalizations recently. What was your experience going into medical spaces and hospitals on a regular basis during the pandemic?

RU: Well when it first started to get bad right before Easter, I was the last patient at my pain management doctor’s office. I walked in, and it was my first time going alone, and I was really nervous because it’s really hard to self-advocate when you’re really sick, and I’ve had a lot of horrible experiences. People trying to trick you with things like, “Are you just, like, a drug seeker?” And I get really nervous talking about opioids because my life would have been unlivable without them. And, you know, you can’t ignore that there’s a really horrible reality when it comes to them. But I was really nervous because talking about it gives me so much anxiety. And then, the more anxiety you have, the more sketchy you seem, and then you speak too much, and then you’re nervous, and it’s a big disaster. So going to appointments on my own because I couldn’t have someone in with me definitely took a toll on my health. But yeah, I was the last person at my pain management doctor’s office before they shut down, and I was just standing there, and they’re like, “Don’t even open your ziplock bag to let the air from your house out.” They didn’t even have me sit down. They literally were covered in these hazmat suits, taking plastic wrap and duct-taping it over the filing cabinets, and doing stuff I’ve only seen in, like, containment movies, or whatever the outbreak movies are. And I was like, “This is really sketchy. This is really bad.” But every now and then I would really realize how sketchy it was when I needed to go to the ER and I would pull up at the ER and see how busy it was. And talking to the people in line was kind of freaky, especially since when it all got really bad, I wasn’t allowed out of the house. So by the time I actually got out of the house to go to the ER, it looked like a weird, post-apocalyptic world. It was creepy.

I had to be sure I went to the heart hospital, because they had to make sure they didn’t allow COVID patients in because it’s a heart hospital. I was grateful we found them, because I had gone to the other ER a couple of times – they had people crashing in rooms next to you. It was really creepy. And of course I was by myself since I couldn’t have my mom go with me. We ended up doing a lot of self-medication and flowers because I never wanted to risk it. I actually gained a lot of weight because I didn’t work out – because I was afraid of pushing myself too far, because I knew I couldn’t go to the hospital, because it was just way too sketchy there.