Regan O’Shea is a sophomore public health major at Texas A&M University. Regan has Postural Orthostatic Tachycardia Syndrome (or POTS), which she describes as her heart being too small leading to her body not being able to pump blood where it needs to go.
In this episode, Regan talks about navigating the world with a nonapparent disability and how communication is key to others understanding what they often can’t see.
Transcript
Tanner Parker: What do you think and feel when you hear the word disability? For thousands of students at Texas A&M University, disability is a part of how they explore and engage with the Aggie experience. This is Agcess, a collection of first person stories on what disability means to Aggies, just like you. We hope these conversations, open your eyes and offer new perspective toward your understanding of disability.
Justin Romack: Howdy, my name is Justin Romack and I am a program coordinator with the Department of Disability Resources here at Texas A&M University, and I am joined with my co-host Tanner Parker.
Tanner Parker: Hello.
Justin Romack: You are listening to Agcess, the podcast for stories on disability here in the Texas A&M University community. We are super excited to have our guest today, Regan O’Shea, who is a sophomore here at Texas A&M University. Thank you so much for joining us today, Reagan.
Regan O’Shea: Yes, of course, [inaudible 00:00:55]. My name is Regan O’Shea. I am a sophomore, as Justin had said, I’m from Coppell, Texas, which is the Dallas area, and then I’m a public health major.
Tanner Parker: Perfect. So for starting out, do you mind describing your disability to us?
Regan O’Shea: Yes, of course. I have a few different genetic conditions that kind of all overlap and make me considered technically physically disabled. So I have something called postural orthostatic tachycardia syndrome, which is a bit of a mouthful. It’s called POTS for short pretty frequently. And essentially that is kind of my biggest struggle. The big idea is my heart is too small and so it has to work harder to pump my blood, and so my blood vessels don’t contract the way they should and they don’t get the blood to all the places in my body they should go, and so that causes a lot of fatigue, dizziness, especially standing. I kind of see spots and black out a bit, and that’s kind of the biggest thing. I also get very fatigued. And energy, it’s hard. So I was diagnosed my sophomore year with POTS and during that time I kind went through a flare, which was just a season that it was really bad in my life.
And during that flare, I was sleeping 20 hours a day for probably a month or two. And then those flares would kind of come and go all throughout high school. It’s a lot better now, a lot more under control. As I’ve come to college I’ve just learned how to manage it better, but that is the big thing with POTS. And then I also have something called Ehlers-Danlos syndrome which is a disorder that has to do with your elastic tissue. And so essentially I’m very hypermobile. Everything is loosey goosey. I dislocate all the time. I just had knee surgery because of a knee dislocation. So it’s just kind of crazy. That one, it sounds more painful than it probably is, but it doesn’t typically bother me as much in my day to day just because that’s something you can treat. You can do physical therapy. But with your heart being too small, that’s just kind of a problem that like, yes, you can take certain medications. You can exercise, you can do all those things, but it’s something that you can’t really change about yourself.
Tanner Parker: So you mentioned that your disability, Ehlers-Danlos, doesn’t affect you really in your day to day. So I’m curious to know, how does your disabilities affect you in your day to day, specifically in college, and do you feel as if there’s any barriers that you encounter in college?
Regan O’Shea: So the biggest one is I’ll still have flares. Thankfully they’re not as bad as the flares I had in high school. I don’t go down for a month, I go down for a week and typically to a lesser extent. But the main thing is fatigue. I will lay in bed and just can’t get out. I will be really tired, really dizzy frequently. A large kind of like brain fog comes over me and so it’s hard to think. And so with that, that creates a real barrier with schoolwork, just to have three or four days, even when you’re out in college, in a row is a big deal. That’s a lot of work you get behind especially when you’re taking a full schedule. And so, those weeks it’s really hard for me just to kind of do my work, to do my day to day activities. And so something that I’ve learned in college, which wasn’t as great in high school, is communicating with your teachers early is really important, especially when it’s something they might not have heard of or experienced before.
And so disability resources has actually been really helpful to me with that. They’ve gotten me the paperwork. They’ve kind of explained to me how to kind of approach the situation with teachers, and teachers are generally very understanding. Occasionally it does become difficult when you can say, “Oh, well I’ve been sleeping all day and that’s how I know I’m sick and I don’t have a doctor’s note.” And they’d be like, “Oh, you’re tired.” And it isn’t you’re tired. It’s something else. So just kind of this idea of it being like an invisible illness almost. I could be having a flare today and I could be sitting up and talking to you right now. And besides my eyes maybe looking a little glazed over, you wouldn’t know. And so it’s hard sometimes to have people understand that this is something that’s really going on with me.
Justin Romack: You know, it’s funny, even before you mentioned the invisible piece, it was sort of the next direction I wanted to go because you really have to disclose your disability. Right? People don’t see that. And so, people would otherwise not have any idea. And I always wonder, how does that impact how you see yourself? How does that impact your understanding of disability and how that fits in with your identity?
Regan O’Shea: Yeah, and so it’s weird because it isn’t something that’s obvious about me. So unless I tell you, you don’t don’t know I’m disabled, which is interesting. And I think because of that, it maybe affects me in ways that are really different than someone else, because I know it’s a part of me but it’s almost like it’s something I don’t have to live with when I’m healthy. If that makes sense? So for a long time, I fought against it. And I was like, “No, this isn’t me. That’s sick me.” But sick me is also healthy me. The genes are the same. They affect me the same way I’m just managing them better. I think for a long time I had a really hard time finding a balance and finding acceptance in that. If that makes sense?
Justin Romack: Totally, totally. And I think that’s a powerful realization. I mean, we were talking with another guest and they talked about how much transition and learning and development happens when you come to college. And you really figure out who you are as a human being. And this is a piece of you, and it sounds like you’ve recognized and you’ve learned that that piece is something you can’t separate from who you are.
Regan O’Shea: Yeah, especially coming into freshman year of college, I was healthy the majority of freshman year, but I didn’t do anything because I was terrified I was going to be sick. And that seems silly to me looking back on it, but high school, that was such a huge deal for me. Halfway through my senior year I had to be homeschooled because I was sick. And so coming in, I did nothing. I would go to class and I’d study and I’d sit in my dorm room and I had my few friends, but that was my entire life. And so coming into sophomore year, it’s been a realization that like you don’t have to be afraid to do things as long as you can be upfront with what’s going on in your life and you can trust the people doing those things with you.
So this year it’s been really cool for me to kind of get to grow in that and get to be involved in new activities and organizations. And that’s just been something really special, but something that was… I just noticed so much about myself this year because it’s like, wow, I’m so much happier because I’m not afraid of it anymore.
Justin Romack: Being able to sort of turn that corner and reconcile who you are with where you want to be, I think, is incredibly powerful. I’m kind of curious, you talk about this journey, you talk about the realization of healthy me and sick me are the same person, right, the same genes. What do you think has influenced your journey into understanding who you are? Were there people that you talked with? Were there things that you read or conversations you had? I’m just kind of curious how you progressed through that journey.
Regan O’Shea: Yes. So I’m Christian and very religious, and I think a big part of kind of my journey in coming to grips with things was through my religion. I am not a person who’s very trusting of the world. And so for me, that’s hard to be trusting of God. And something I learned is that people around you are going to provide for you and that those people are going to be put in place in your life and you’re not going to be seeing it but it’s there. So I mentioned before, in high school I was just very, very sick. When you’re sick you can’t be a friend to others. You can’t be a friend to yourself. You can’t get out of bed. And so it’s hard for people to be friends with you and it becomes really isolating. And I remember kind of coming into my high school graduation I was like, “Oh my goodness, I’ve got my 10 people that I’m close to but that’s it.”
And I showed up and it was like, yes, those 10 people were there but then my graduation I got to see this whole community that had kind of come around me and was supporting my family and was supporting me, that I didn’t know was there, but it was really significant for me because I got to be like, “Oh my goodness.” Here I am thinking this is something I’m alone in and thinking this is something no one understands. And maybe they don’t completely understand. They don’t know what it’s like to be me. They don’t know what it’s like to be my mom terrified for her daughter, but they’re here and they’re supporting me and my family and they’re wanting to listen and learn. And that was a really big thing for me with coming to grips with everything. I was like, “Wow, I’m not this isolated person I thought I was. I have community here.” And that just brings so much confidence.
Tanner Parker: So do you think that, obviously it sounds like you think community is really important in the development and identity of understanding disability, can you talk about, I guess, more about how important it is and personal experiences you’ve had with community?
Regan O’Shea: Yes. So one kind of big way I’ve been able to find community specifically within the disability community, so POTS falls under this umbrella term called dysautonomia, which is a general… it’s basically your autonomic system doesn’t quite do what it’s supposed to and there’s a whole general kind of umbrella term that encompasses a bunch of different rare disorders. And my mom, when I got diagnosed, got plugged in with the dysautonomia support network, which is kind of an online group, and just kind of started going there, asking questions, “Where are doctors? What do you do? My daughter was diagnosed I have no clue what’s going on.” And eventually actually got kind of plugged in with some of their teen sites and it was really cool to have that environment of knowing that I was also supported within like a community of people experiencing the same things.
And then as I’ve grown to be able to answer their questions and be able to say, “Hey, this is what I’ve done. This is what I recommend. Don’t be afraid to ask for help because it’s something that can be really hard at first.” And so, to be able to go out and be like, “Oh my goodness, yes.” Here’s this community that you can have and be there and then to know that like I can be support in that way is really special as well. It’s a rare disorder, but I’ve met four people who had been diagnosed while in college, just randomly, like not bringing it up.
But to be able to be like, “Oh my goodness, yes, hey, here’s this test they’re going to do. It’s going to be really miserable. Don’t schedule your day, leave time for yourself in that space. And here’s what I got to do that kind of helped me form community and here’s how you talk to professors.” It’s been really special to be, as I’ve gotten better to see people going through it alongside me, and be able to be like, “Ah, yes, I know that, and I can sit here and listen to you talk about it for an hour if you need it.”
Tanner Parker: Another question jumping off of that real quick. You mentioned how your mom got started in Facebook groups and things like that, and whenever I decided I wanted to come to A&M, my mom joined all the Aggie moms’ Facebook groups and things like that. And I think moms are awesome. But what would you tell someone who maybe doesn’t have a motherly figure or parents helping them get started in the community whether it’s disability or not? How would someone take those first steps to get involved and meet other people that are similar to them without having maybe parents or guardians or things like that?
Regan O’Shea: So, those Facebook groups are definitely still out there. My mom’s a part of some, and she’s the one who found the organization, but the groups I’m specifically a part of are for young adults. My disorder is especially common with young adults. My mom’s not in there. She’s not a young adult. And so, it’s definitely a step you can take to get involved in those themselves. And then I think with anything it’s super awkward to be the one inviting someone to do something or asking a question or initiating anything, or at least just for me, I always feel super weird about it. But especially in a community where you often feel isolated, it is so great, like you’re always wanting to go to those things.
You’re always wanting to be invited to those things because that’s something you’re looking for. And so, even though it’s painful to be able to take that first step and just reach out to someone, “Hey, do you want to go to coffee? Do you want to go grab lunch?” It’s silly, but it’s something that in college I had to learn regardless, like disability situation, non-disability situation, like that’s just something that’s so good to do in college and so good to help get plugged into something, because if you’re trying to get plugged into something someone else is as well.
Justin Romack: Ah, that’s great. Yeah, absolutely. It’s kind of like that idea of if you’re asking a question, somebody else has got that question too. Right? So we are not meant to live life alone. We talked about it earlier. Life is best lived when lived together and so community is so important. Reagan, I want to know, you talked about studying public health, I’m curious if your disability played any part in considering that? And then if so, or even if not, how has your disability impacted how you pursue that field?
Regan O’Shea: Yes, for sure. So yes, my disability definitely kind of impacted my decision to go into the health fields. Initially, I thought I wanted to be a doctor. That has switched pretty quickly. I just really do not like chemistry class enough for that. I’m going to be very honest with you. However, coming into school, I was freaking out because I had no idea what I wanted to do. I was like, I’m what, 18 years old and you’re asking me what I want to do for the rest of my life? Like no way. And I realized that’s not exactly the situation, but it felt like that at the time. And something I constantly thought back of was kind of all the people I experienced in my journey kind of through diagnosis, in and out of hospitals, seeing different doctors, I realized I’d seen a lot of the medical field.
If there was a specialist you could talk to, if there was a role you could have, I’ve probably experienced it at some point on the other side of things. And I realized what a huge difference those people can make. I’m really lucky. I do come from a great family and my family was crazy. We were all so stressed, so tense. I was so afraid, everyone was so afraid. And the simple act of a nurse who spent the extra 10 minutes asking our family about our vacation plans we had next week, or taking the time to check in after the fact. I had doctors who would send us Christmas cards, just like little things like that.
Administrators who’d come in. People who worked for not-for-profits or organizations that provided support, those people were so impactful to me and I thought that’s what I wanted to do. And so for me, public health is such a great way to be that impact for the kind of greater population, which is something I felt called to after that, because I know how impactful it is.
Justin Romack: Absolutely. One final question I have, and I think it’s really important, is disability, especially invisible disabilities, like the ones that you navigate life with, these are things that are often uncomfortable. They’re unknown to people. And I really want to know if there was something that you could share with our campus community to help them better understand disability, help them become better allies, educate them, equip them, what is that thing that you would want them to know?
Regan O’Shea: I think as Aggies specifically, we’re called to serve one another. A disability does not mean less than, but it might mean they need more of something, or more support. And so for me to sit down and listen if someone brings it up, and so you said it before, like bringing up your disability can be uncomfortable and it can be hard. I’ve come to a place where I have no filter about it, which is great, but that’s because I’ve been talking about it for six years. And so, to be willing to listen and sit there and truly consider what someone’s telling you when they’re telling you about their disability and to understand that asking for help is so hard. Asking for help can be embarrassing.
I never want to feel like I need extra anything. I want to be self-sufficient and do everything on my own, but sometimes your body makes it to where you can’t. And so to know that when someone approaches you with something like that, that’s a big deal and you need to take it seriously and you need to truly consider what they’re asking you for and how you can support them in that. And clearly, all the time you can’t do everything, but it’s so important to take those steps when someone approaches you about them and then to take notice in what they tell you about. My best professors I’ve had experiences with, they called me in and they asked. They said, “Okay, I see your paperwork. How does this affect you? How can I support you? If you’re sick what do you need me to send to you? And can I go research what you have?”
And I’ve had professors who have sent me follow up questions after they’ve done their own research, and things like that make you feel so seen and heard and make you feel valued despite kind of anything the outside world might be telling you about having a disability. And so, to take the time to invest in people like that is just really important and something I think we should all do.
Justin Romack: That’s so powerful. Community is really everything. Community helps us understand ourselves, helps us feel seen and heard, feel part of a group, be less isolated. But community is important because when we don’t know how other people are moving through the world, it’s hard to be help. It’s hard to be a resource to people. And so I think you have figured out some really cool ways of engaging people and sharing who you are and being vulnerable in those moments where you do need resources and I think that’s really important. I’m so grateful for your time and for you sharing here on this podcast. Thank you so much.
Regan O’Shea: Yes, of course. I enjoyed it.