Kyira: “What made you decide to be a part of this project, or why was this important for you to sign up?”

Rose: “I was a little hesitant about it at first. I’ve never done something like it. But, um, around three years ago, I had a medical relapse and my body went through a lot of changes. And I’m back to a point where I’m similar to how I was before that. But it was kind of, uh, a really private process to get there and get back to feeling good in this body. So I thought it was important.”

Kyira: “Yeah, so really going on this like a recovery aspect of it, but also just sort of reclaiming your body as you move forward and live through this too in a lot of ways.”

Rose: “Mm, hmm.”

Kyira: “So what did that feel like for you, then? Going up there and taking those photos.”

Rose: “Yeah, it was, it was kind of surreal (laughing) to be honest. Um, I don’t know, I guess I’d always felt like my disease was really private because it’s not something that appears to anyone else so no one would know. And not a lot of people did know at all that I was sick. And I’d had it for like seven years now, so it’s kind of like old news to me. But I never had a relapse where I had to treat, and at that level, so I did about eight months of steroid therapy, which is really rough on your body. And I lost some of my hair and I gained like 50 pounds in a month. And I was just, I don’t know, everyone knew then and, um, you almost had to say it so they didn’t think something else was going on. You know, like, ‘I’m really sick right now.’ And people could see it, and it was a lot different. And I felt pitied a lot and I really didn’t like that, so it was weird.”

Kyira: “Yeah, it’s strange how we go from – cuz I noticed this just across the board – how we go from judging and assuming and almost shaming people for things that are going on with their bodies. And then once we know something else is going on, if we had to ascribe a value to it of like, ‘Oh, they’re really sick,’ and there’s this, then it almost flips to just pitying rather than just letting that person be in their body and their journey and asking like, ‘What would actually be helpful from me right now?’ Which, then it sort of flips like – my, I’m making an assumption – but part of me would think I wouldn’t have wanted to have told people then after that. Like I almost wish they didn’t know (laughing).”

Rose: “Yeah!”

Kyira: “Cuz now this doesn’t feel good either! Cuz you’re still fighting the medical side of things and going through that, but you’re also being treated differently by people now.”

Rose: “Mm, hmm.”

Kyira: “Have you noticed that shift as you’ve been able to, as you said, get back to where you were beforehand and getting healthier it sounds like, just with everything?

Rose: “Yeah, it was really odd because the timing was actually my senior year of high school. And then summer hit and I was off the steroids. And I worked off the 50 pounds (laughing) and I hit college. And no one knew. And that was really odd because I was still processing this, you know, traumatic thing that’s happened but it’s not something that comes up. It’s not something that, you know, people are asking about, so you feel like you have this thing that’s just happened to you but no one even knows about it. So it was really weird for a while. But, um, I don’t know, it feels really good to be back in a body that I recognize even when I am sick, still. So the nature of the disease is very bearable and just, you don’t always have to treat it, but sometimes it’s down. But I think there was – when I was first diagnosed there was a lot of, um, you know, wanting to measure up to everybody else and wanting no one to know because I knew that there was something different going on, and I didn’t want anyone to know. But then it kind of shifted to accepting what is going on and that being OK as well, that sometimes my body is reacting differently than other people’s and that it’s OK to be in that body, too, that I can’t just choose to like the body when it’s healthy, you’ve gotta like it when we’re sick, too.”

Kyira: “Yeah, yeah. Where do you think that messaging came from? Like where did you, when you said, ‘measuring up,’ where did those values, or like the standards you were wanting to hit, where do you think that pressure came from or where those ideas came from about what that looked like?”

Rose: “Yeah, um, let me think. I don’t know, I guess it was also at that time in adolescence where I feel like everyone’s pretty competitive so (laughing) everyone’s seeing how they measure up anyway. But I felt like I had really disappointed people, which is kind of a ridiculous thing to think. But that there was something wrong with my body, therefore it was my fault. And that even if I didn’t intend it, it was in my body and it was causing everyone else the stress, and myself the stress. So that I needed to take responsibility for that and try to compensate by, um, being good with everything else. Which, I don’t know, I think it’s worked out OK, where, you know, you strive and you work really hard for a lot of things. But I don’t think there’s necessarily that need to measure up anymore. I guess I just kind of stopped, um, caring as much about my physical body. Not in the way that I don’t want to take care of it, but in the way that you just have to acknowledge where it’s at and that there is no control over that aspect of it. And it’s better to just acknowledge it instead of, um, try to fix it or distract the attention away from it.”

Kyira: “Yeah, I think that’s, I mean, it shows how far you’ve come through that journey and taking the time to really learn about yourself, learn about your body, reconnect with your body. And that sounds like a lot to take on as a teenager. So I’m just like – like my shoulders, I noticed, have been so scrunching in of, wow! I mean, that’s a lot to carry and to feel that sense of responsibility so young. And to have been able to come out of it on the other side and learn these things you have is tremendous! I’m curious, can you pick one of those moments that it just felt, you know, maybe impossible’s not the right word, but just those really difficult moments, and where did you find the strength to keep going through something like that?”

Rose: “Ah, there’s, there’s a lot of moments, there’s a lot of funny ones. They shouldn’t be funny but they are. Um, when I was on this steroid, I was ravenous, which is why I gained so much weight. But it was like a disconnect between my body and my brain, basically, where I always thought I was hungry but I was like obviously full. So I’d eat like 30 slices of pizza – and I’m not exaggerating! (Laughing.) And I obviously could not take more food in at a certain time, and people are just looking at you like, ‘What the hell?’ And you’re like, ‘I’m just really hungry! Like we just need to keep eating.’ Um, and I eventually acknowledged that this was happening, cuz I wasn’t thinking about it at first. And there were some ridiculous moments where it’d be really late at night, and I wasn’t sleeping a lot because of the medication, and I’d be thinking about food. My world revolved around like my next meal, so I didn’t stop thinking about it, and I’d want it so bad that sometimes I’d just be like crying. And my mom would come down and be like, ‘What’s wrong?’ And I’d be like, ‘I just really want a grilled cheese.’ And she was like, ‘But we can’t have grilled cheese right now. We’re gonna wait for the morning.’ (Laughing.)”

Kyira: “Oh, yeah.”

Rose: “So those were like more of the funny ones. But there were definitely, I mean, there were really scary ones, too, especially when I just got diagnosed because no one knew what was going on …”

Kyira: “Including family at the time?”

Rose: “Yeah, um, and the doctors still, they’d – OK, there’s not a lot known about it so it’s kinda like a big question mark all the time. And just like being, um, alone in the bathroom after it happened, after it got diagnosed, and I just kinda stayed there for a while until I felt better. (Pause.) Yeah, I mean, I just stayed in the bathroom until it felt OK. But it was, it was really weird, especially since so often symptoms don’t present, so they’ll say something’s wrong and then everything feels fine.”

Kyira: “Right.”

Rose: “Like, ‘What do you mean something’s wrong?’ And they’re like, ‘Oh, well, you’re blood work came back really badly.’ And you’re like, ‘Oh, well, huh. I feel great so …’”

Kyira: “Which is also like the body’s way of sort of the mind fuck all over again, like you’re thinking one thing, you’re operating one thing, and I can see how much pressure that would be like, ‘I feel good and I’m doing these things, and this is still happening.’ So it can kind of spiral for you in a lot of ways, too. And so when you think about that and think about where you are now, what’s something that you – you know, you mentioned being OK with your body where it’s at and acknowledging and embracing your body. How do you nurture that? Cuz my guess is you’re not gonna be like rainbows and sunshine from here on out …”

Rose: “No (laughing.)”

Kyira: “There’s gonna be those hard moments again. How do you nurture that feeling to continue to work in that direction of celebrating and loving your body where it’s at?”

Rose: “I think it’s one of those things that I’ve been trying to prepare myself for, because of constantly the nature of the disease, I will relapse again and I need some sort of treatment again. So I’m not really sure what will happen when it actually happens (laughing), cuz it’s so different now – it’s only a couple of years ago.”

Kyira: “Yeah, the difference between like 17 and 20.”

Rose: “Um, it just feels a lot bigger. And it will be the first time I’ll be dealing with it away from my family and all and with a new network of people have never seen it, which could be difficult! (Laughing.)”

Kyira: “Right. How do you let people into it again when there is – how, like, how difficult that would be, when you said before that when you did tell people, when people knew what was going on, they ended up pitying you. And they didn’t respond the way that you want. Now you know there’s this not even possibility but reality that you’re going to face this again at some point. And you’re gonna be faced not only with dealing with this sort of internal battle within yourself and helping your body and doing what you need to do there, but also trusting to let people in again and knowing how to ask them to give you what you need and not feel pitied again. Because my guess is that would feel even more wrong.”

Rose: “Yeah. No, no pity! Um, so I’ve tried to really talk to people I’m closest to about it …”

Kyira: “Like at school now?”

Rose: “Yeah. And, um, it’s been frustrating just because it’s one of those things where until you see it, it’s not really real. And in a way, before I relapsed so fully, it wasn’t even real to me as much because you’re just saying like, ‘I’m sick and this might happen.’ And no one’s seen it. So I think the next time around, it’s gonna be a lot more about other people than it is about me. Because I will have seen that and I will have known that, but other people won’t. And acknowledging that people probably aren’t gonna approach it in a way that I want them to, and that it’s really hard for them to. So I don’t want to be pitied, but I also want to understand that it’s really hard for people not to pity you in that situation, and that they might need some time, um, before they can come around and have me be like, ‘OK, this is what I need you to do for me.’ They probably aren’t gonna be able to do that right away, and that’s gonna be OK.”

Kyira: “Yeah. And so creating space for other people also, I think, you know, because like you said, you’ve been through it before and now you kind of know what you do want. It’s helpful now that you’re aware of what you don’t want and what you do want from people.”

Rose: “Mm, hmm.”

Kyira: “So even like what you just said to me, if I were your friend in that situation, I think that would be really helpful to hear, ‘I know it’s gonna be hard not to do these things, and that’s something I don’t really want while I’m going through this. I want to give you the space to get there to, like, be with me, because you’re not gonna be able to take it in right away.’ And to like, if you were able to say, ‘That’s not for me, that would be for you’ almost. So, meaning the flip.”

Rose: “Mm, hmm.”


Kyira: “So like how helpful that is for you to be able to articulate to your friends and loved ones. ‘I get it. I wanna give you space.’ Ultimately, it’s still about you and being there for you, though, so (laughing). You know, it’s not your job to give everybody so much space that then like they’re gonna take their time like you don’t get the time every time to just like process it either. So just being able to have them show up for you in the way that you need. So what’s one thing as you’re kind of in the space of feeling good about where you’re at right now and really kind of taking on that energy, what’s one thing the next time that you notice those darker moments hitting, the next time that your body’s having some sort of reaction or you’re having a relapse – what do you want to be able to replay in your head, like a tape that you’re gonna record for yourself and tell yourself in that moment?”

Rose: “Well, I think what I’ve done in the past and what I hope I can do in the future, is that it’s all temporary. And it can be really rough, but it’s gonna be temporary and, um, the relapse is not forever. You know, and just like whenever you’re struggling with a part of your image or your identity or your body, it’s, it’s not permanent. We change all the time. And kind of pulling on those times when you felt really good in your body and working towards – not like living in the past, but working towards those moments again, or knowing they will happen. Like kind of building resiliency that, you know, this body is not great right now, but like maybe in six months we can like hike next to the ocean and it will be fine! You know (laughing). Um, just things that feel really good. And not necessarily pushing for it in that moment, cuz that would just lead to frustration where you’re like, ‘I don’t have the energy to do this right now. But I will later, but I can’t expect that of this body right at this moment.’”

Kyira: “Exactly. And being able to hold that when that’s going on for you. Are there questions that I didn’t ask you or things that you would have wanted me to talk about a little bit as you, um, think about your interview and what this has meant for you as you do this?”

Rose: “I don’t know, I guess it was just really important for me. I think it will be interesting seeing the photos and kind of having that out-of-body experience like, ‘Oh, this is – this is who we are.’ Like that’s pretty cool! (Laughing.) That’s pretty neat! And kind of a reminder, um, just having those as a reminder for next time.”

Kyira: “Oh, yeah! And using that even when you said like remembering the great things that have happened and all the possibilities of what can happen, you’ll have both this interview and those photos. So it’s the strength that you’re presenting with today and that you’ve built up over years of hard work to get here will carry with you into the next time that happens. That’s awesome!”