Earning a PhD can be grueling for the healthiest student. But what is it like for a student with widespread pain and fatigue? Is it even possible? Marine geologist and geophysicist Gabriela Serrato Marks tells us that academia was not set up for people like her, and she wants to change that.

Credits

Hosts: Alexis Pedrick and Elisabeth Berry Drago
Senior Producer: Mariel Carr
Producer: Rigoberto Hernandez
Audio Engineer: Jonathan Pfeffer
Original Music by Zach Young
Image courtesy of Gabriela Serrato Marks.

Resource List

Bayer, Skylar and Serrato Marks, Gabriela. “Our Disabilities Have Made Us Better Scientists.” Scientific American, July 10, 2019.

Serrato Marks, Gabriela. “Conferencing while chronically ill.” Medium.com, December 18, 2018.

Serrato Marks, Gabriela. “How to Make Professional Conferences More Accessible for Disabled People: Guidance from Actual Disabled Scientists.” Union of Concerned Scientists, November 8, 2018.

Transcript

Lisa: Hello and welcome to Distillations. I’m Lisa Berry Drago. Today we’re talking to Gabriela Serrato Marks, a recent PhD in marine geology and geophysics in a joint program between MIT and the Woods Hole Oceanographic Institute. She’s also a freelance science writer and patient advocate who writes and speaks about being a scientist and academic with an invisible disability. Gabriela has Ehlers-Danlos syndromes, a group of disorders that affects connective tissue throughout the body. For Gabriela it manifests in physical pain, fatigue, and immune system issues. Our senior producer Mariel Carr interviewed Gabriela about the challenges of being a scientist and a graduate student while also living with an invisible disability. 

Mariel: Hi, Gabi, thank you so much for joining us. 

Gabriela Serrato Marks: Thank you so much for having me. 

Mariel: Of course. So to start, tell us about your work. You’re a marine geologist and geochemist, and I understand that you spend a lot of time in caves looking at stalagmites, I believe. So to start, can you remind me slash our listeners what stalagmites are? 

Gabriela Serrato Marks: Yeah, sure. So stalagmites are, rocks that grow in caves, and they’re the ones that grow on the floor upwards and stalactites are the ones that grow on the ceiling and go downwards. But I only study the ones that are on the floor growing upwards because they work much better for the research that I do. So I use those, I take them out of caves, slice them open, and use geochemistry to look at the climate.

Mariel: And where are these caves? Where do you do your fieldwork?  

Gabriela Serrato Marks: I mostly work in Mexico, so I have collaborators that are at UC Irvine and then at UNAM, the national university of Mexico, and we work together on a project that’s in Northern Mexico.

Mariel:  Cool. So we are talking to you today as a part of our series on scientists with disabilities. And I understand that you have an invisible disability that actually began not that long ago. Can you tell us about it?  

Gabriela Serrato Marks: Yeah. So my first year of my PhD I  started to have pain in my back. And then soon after that I started having pain in my jaw and that was happening while I was still doing physical therapy for my back. And then soon after that, I started having pain in my hands. And so once I put together that there were these three different body parts that were causing me life-changing amounts of pain and really making me change my habits and my hobbies, that made me realize that something was wrong.

And so I was initially diagnosed with fibromyalgia, which is a chronic pain condition that is absolutely real, but it didn’t end up being the correct diagnosis for me. I felt like the doctor was really saying, we don’t quite know what’s wrong or how to help you. So that was really frustrating. But about a year later, I started the process of getting diagnosed with Ehlers-Danlos syndrome. So I have hypermobile Ehlers-Danlos syndrome, which gives you problems with collagen. So there’s collagen throughout your body and for me it causes widespread joint pain. I have allergic reactions because of other immune system things that it causes, I have GI symptoms, it’s basically everything you can think of. And so I’ve been dealing with that now for the past two or three years. I’m trying to get good physical therapy and medication that really works, and sine kind of management, but there is no cure and there’s no official treatment. So it’s a very different process than going to the doctor and having them say, you have strep throat, we’ll do this test and then you’ll get this medication. It’ll go away.

Mariel: And so this all started when you were already in graduate school. Right? And I know, you know, my own experience of graduate school was that it felt like an exhausting marathon for the healthiest of people. And your work is also quite physical. How have you managed?

Gabriela Serrato Marks: It has been really challenging to manage my health while also trying to do research. It has been difficult to find ways to do lab work and actually go caving with the amount of pain and other health issues that I have. So I’ve found ways to make it work, and I am still able to go caving. But that happens because of a supportive team. And I have a lot of caffeine, a lot of diet Coke, a lot of sugar, a lot of, sort of short term things that keep me going. And then when I get home, I kind of crash and have to adjust again to the lower level of energy. And it takes me about a week to recover from any kind of a trip.

Mariel: Hmm so exhaustion is a big part of it.

Gabriela Serrato Marks: Yeah, widespread fatigue. Well, widespread pain and chronic fatigue. So no matter how long I sleep or how much caffeine I have, I’m still always exhausted and I feel just really run down. Um, and it’s tough to get used to. I think that’s one of the symptoms that still bothers me the most because it means that I can’t just do as much in a day as a healthy person. So if I go to the grocery store, that takes me out for at least an hour because I just have been so exhausted by that process.

 Mariel: Do you feel like graduate school, or just academia in general I guess, is is set up you know, to accommodate people with different abilities?

Gabriela Serrato Marks: I think grad school is set up and academia more broadly is set up to be for a single man who doesn’t want to be involved with his family or his kids. And it’s really hard to not be that. I think to be in academia, being a woman with a disability, also with Mexican-American heritage, and I’m part of the LGBT community, it feels like academia is really not built for me. And oftentimes there are systems in place just to get rid of me in some ways. And I think having to deal with my own health issues has made it so much more clear that there are significant problems within our graduate school system, within science, academia more broadly because anyone with any difference, I think ends up having challenges in a lot of ways. So I don’t have dyslexia, but I have friends who do, and academia really is not supportive oftentimes of any kind of learning disability or difference in reading style, even. Um, and so it’s made me a lot more empathetic and aware of what happens when you are not the norm, whatever that may be. Um, and how challenging it is to be super successful and to really perform at 100% of your capability when the systems are set up to not support you. 

Mariel: So were you able to get accommodations from your school? Can you what was that process like?

Gabriela Serrato Marks: A lot of times if you have any kind of health condition or mental health condition or disability, people tell you to go to the student disability office, the accommodations office, it has a lot of different names at different institutions, but the concept is a place where they are supposed to help you to receive accommodation so that you can do your work. And what ends up happening is a lot of those times, those places are set up to give undergrads testing accommodations. So they’re used to having, um, ADHD diagnoses, for example. And so then they say, okay, we can give you extended time. We can give you a different place to do your, um, tests or your work, things along those lines. But they don’t actually have a lot—they’re not really used to dealing with graduate students who aren’t really needing accommodations with their classes and their tests, but they really need ideas and help with their research. So for me, I went in and said, I’m having this widespread pain. I’m really frustrated and I’m not really sure what I can do or what I should be doing to make lab both safe for me and like a, a longterm option. So I basically said I can’t stand for a long time, and pipetting is really hurting my hands. And so I think I need to sit to do lab work and I think I need to figure out something else other than pipetting. And the person that I met with was sort of like, Hmm, we don’t really have, you know, I, I’m not really sure what to tell you. We don’t really have ideas for that. And I said, well, aren’t there people who use wheelchairs who work in labs and who must have similar accommodations, even if I’m sitting temporarily? And he sort of said, well, the people in wheelchairs usually work at computers, so I don’t really know. And I walked out of the appointment feeling so much more frustrated and less understood than I had kind of started. And in addition to that, the top of the form that they give you is about a diagnosis. So when I was going through two years of not having an official formal diagnosis, I sort of was like, I’m not sure what I’m even supposed to put at the top of this. And I asked someone about it and she said that, you know, you could put a temporary one and then we can talk to your doctor. But it really becomes a system, or a process, where you are having to prove that you need these accommodations and then they give them to you and it’s very much like a—it’s not an empowering process at all. It’s a really makes you feel, at least it made me feel, small, and like I was incapable rather than making me feel like I was set up to do my best. And so I actually don’t have any formal accommodations. It’s only been things that I set up for myself or that my advisor puts into place for me because the institutes process didn’t work for me.

Mariel: So tell me what you’ve done to make it work. And what things have you set up for yourself? What’s been really important and what have you I guess really relied on?

Gabriela Serrato Marks: The people who have been really helpful in, in the lab or in my research setting have been my advisor and my lab mates, um, who are willing to do things like unscrew bottles for me when I can’t open them all the way, um, or do some of the really finicky things that involve standing for a long time and then lifting heavy things. Um, they’re always willing to offer to help me with that. And what’s been really helpful is that they don’t just do it for me. They always ask, would it be helpful if I do this? Or I can ask them to do it, and they always say yes. So, um, I never feel like a burden on them, which has been really nice and really important to me. And I also feel like I can do other things that are helpful for the lab. So, um, we have these giant tanks of argon gas that are really heavy. I guess it’s liquid argon. Giant tanks of argon that are super heavy and I can’t move them when they’re full, but I can move them when they’re empty. And so I’ll move the empty one out while someone else pushes a full one in. And so that way I’m still part of that lab chore of moving around the argon, but I just do the thing that I can do instead of trying to fight with the giant heavy one.

Mariel: I imagine that when this all started for you, it was a really difficult adjustment. Um, can you tell me about what that was like?  

Gabriela Serrato Marks: Yeah. It was extremely difficult to have to go from being a college athlete. I played club water polo when I was in college and I swam from the time I was like four until I was in college. And all of a sudden I was having to ask for help with physical things that I like to be able to think that I can do. Um, and I just couldn’t, I couldn’t do them anymore. And it was, it was very depressing. It was very, um. I don’t even know the words. It was just, it was horrible. Like it was horrible to have, to suddenly need help with basic things. Like I couldn’t chop up an Apple anymore. I couldn’t eat an Apple off the core, and I definitely couldn’t cut it. And so if I wanted an Apple, I had to ask my fiancé to cut it for me. And it was just such a dramatic change from wanting to be totally independent. Um, and the way that I learned to kind of. Deal with that, both in my personal life and in my research was just realizing that everyone needs accommodations for different things. Like some people can walk 10 miles, other people can’t. Like, some people can bike for an hour, other people would have to drive it. And so it’s sort of similar to, like, I sort of had to change how I think about independence. And, um. My own capabilities and not have this deficit model of like, I can’t do this. I can’t do that and have it instead be about what kind of supports I needed. And then when I turned it around like that, it was much easier to talk about it and to say, I’m having trouble with blank. Could you help me by blank? And having other people kind of build a team around me who could help with that, um, really made a huge difference.

Mariel: Because your disability is invisible people don’t necessarily know about your challenges unless you tell them. Do you find that that feels like a burden or that you just keep it to yourself? And what happens with that? What are the problems with that?

Gabriela Serrato Marks:  I ended up sometimes doing things that end up being painful or that I really shouldn’t do. Um. When I feel embarrassed because I don’t want to speak up or I don’t feel like going through the whole thing again with someone of like, what is wrong with me and why I need help. Um, so I’ll like start moving chairs and tables because that’s what everyone else is doing and I don’t want to just stand around. And even now, even though I tell everyone about self-advocacy and to make sure that they take care of themselves first, I totally mess that up still. So it’s an ongoing learning process.

Mariel: Do you think that academia could be different and just become more accommodating to people with different abilities?

Gabriela Serrato Marks: Yeah, I absolutely think it could be and should be different. I think that if we were to make grad school, um, less of like an endurance sport we would have more scientists. We’d have more creative people. We would have a broader range of skill-sets. Um, for example, the GRE, which is the tests that you take to get into graduate school is, I want to say something like five hours. You have one break for 10 minutes. You’re not allowed to bring in water. You are not allowed to stand up. So you have to sit in this one specific chair and you can have a pencil and paper. I’m sure they say that they offer accommodations, but I’m not sure how that process goes.

I imagine it’s not pleasant, and even just that, it’s like it’s a freaking marathon, like it’s not about your academic skills at that point. It’s about whether you can sit and focus for five hours. So, right? It’s not how anything else happens once you get to graduate school. So why test it like that? Like no one would ever say, you can’t have water next to you while you’re typing your academic manuscript. So just small steps like that that you’re supposed to take in order to even get into graduate school, I think should be eliminated. And a lot of programs are now getting rid of GRE requirements, which I think is great.

Sort of the processes and the steps that are built into academia, I think need to start being questioned and taken down a couple of notches in terms of their, um, it’s almost like academic hazing, right? Like they’re, it’s, it’s hard for the sake of being hard. And I think instead we should think about why someone is interested in science and the research and what skills they can bring to it. And there’s a much more holistic way of looking at it. People’s applications and skills.

Mariel: I read something that you wrote about how you’re extra flexible as a result of your condition. Um and that has actually helped you out in your work in some ways. Can you tell me about that?

Gabriela Serrato Marks: Yeah, so I am overly flexible. I can really easily touch my toes. Um, I can reach backwards. I can sort of make a “w” with my legs while I’m sitting down. A lot of little kids do it, but you don’t really see adults do it anymore. But I can still do that. And so when I’m in the caves, they are often small kind of like squirmy points that we have to get through where there’s rocks all around us and we have to kind of move our feet from foothold to foothold to get down to a lower part of the cave. And for some people, they like brute force it and they’ll like hold on in one part as hard as they can and basically like dangle until they can get down to the next one. But because I’m so flexible, um, I carefully can be able to basically stretch myself down to the next one and kind of squiggle my way down until I can get to a, a flat point rather than just having to brute force it. Cause I can’t, I can’t hold myself up like that as like a chin up, um, type thing. So I’ve had people that I go caving with, say, like, “you are very flexible. Like, wow, that, how do you do that?” And then I’m sort of just like, yeah, I am. Um, I always make sure there’s one person that I’m with who is aware of like my health conditions and all that type of thing. Um, cause it wouldn’t be super safe to just not tell anyone. But I do usually try to keep it to myself, um, with other people so that we can just focus on the caving and it’s not, um, they’re not worried about me the whole way.

Mariel: So conferences are also a big part of academia, of being a scientist, and you’ve written about how challenging they can be for people with disabilities. Tell us more about that.

Gabriela Serrato Marks: Going to conferences is another one of those sort of endurance type rituals that we do in academia, where in some cases, there’s programming from 7:00 AM to 10 o’clock at night. And I don’t think there’s a lot of people who can fully focus and beyond for that amount of time when they’re healthy, never mind if they have a chronic condition like I do. So for me, uh. I found what’s most helpful for me is to take a lot of breaks and to try to go to sessions that are within a small area, and instead of going from one end of the conference center all the way to the other end, I kind of pick a neighborhood and I have to stay in that area for the morning, for example. Even if there’s something that looks really, really interesting, but it’s on the other two blocks away, part of the conference center. And also seeing friends is one of the main points of a conference—interacting with colleagues, networking, um, those sort of non-research focused, uh, sessions or sort of unofficial sessions where you’re with, um, friends at restaurants or bars, um, where I can’t drink and I can’t stand for much longer than like 10 or 15 minutes without getting light-headed. So a bar is like my worst nightmare because there’s like nothing for me to eat, nothing for me to drink except like seltzer. And then we’re all standing around at high top tables. So I end up missing out on those. And I know that I’m missing research conversations, I’m missing potential collaborations.

And then I also worry a lot about having a reputation of like being no fun, um, and being like, a woman in a male dominated field still. I don’t want to, quote, be that girl, if that makes sense. Like, I don’t want to be the one who doesn’t show up to anything fun and is only wants to talk about research because that’s not who I am.

I’d love to like sit and eat brownies in my hotel room. I just don’t want to go to a bar so it gets complicated really fast when I’m trying to plan out my conference schedule and when people ask me, “are you going to this conference?” or that event at the conference, I sort of ended up being like, I’m not really sure. 

Mariel: Yeah. So I want to talk about COVID, um, COVID has changed the way that we all interact, how we go to meetings and conferences, And it it’s become more accessible right. For everyone, but that we can do all these things without leaving our homes. And this all happened basically overnight. Despite the fact that so many people with disabilities have been trying to kind of make that shift happen for so long. How does that feel that that that it sort of happened when the able-bodied people decided it should happen

Gabriela Serrato Marks:  A lot of disabled activists that I’ve, that I’m familiar with, that I’ve read stuff by, are saying that it’s frustrating to see that it’s happening now when for years people have been asking for remote options. Um, if you’re immuno-compromised, if you want to go to an event and it’s not in a wheelchair accessible space, like there’s so many reasons why it might be more helpful for it to be remote.

Um, and so. I think there’s a lot of frustration that it’s happening now. All of a sudden it’s so quick and easy, no problem. Everything will just be virtual now. Um, like when the healthy people need it to be basically is like the last part of that sentence. Um, but once we get beyond that frustration, which I totally understand and is very real, I think that there are a lot of opportunities for, um, improving the.

The accessibility of events by having them be online. But there are additional layers of access that have to be added on. So, for example, um, if it’s a. Video call like this, making sure that there’s only one person speaking at a time so that anyone who is lip reading can wash the person’s face, um, or better yet, having live captions and, or ASL interpretation, um, American sign language interpretation so that anyone who has a hearing disability is still able to fully participate.

Um. Whereas if they’re in person, it may be easier to lip read and to focus on one person at a time, for example. Um, or when everything moves online, um, it becomes sort of more acceptable, I think for people to be programmed all day to be working on stuff nonstop. And so when you need to take breaks for your own cognitive functioning or your own, um.

Kind of mental health and wellbeing. I think that sometimes I could see that being more difficult as everything is online. If you’re just in zoom meetings from nine to six or however long your day is, um, there’s not that lunch break built in, or if it is a lunch break, maybe you’re talking to people over your lunch break and then that’s not very restful for your brain either.

So I think there’s. Pros and cons just like everything, but I, I hope that there are both options going forward.

Mariel: Yeah, me too. It seems like there should be. Um, so what do you want non-disabled people to do differently or just to know?

Gabriela Serrato Marks: I think the one piece of advice that I have for. Healthy people, abled people or whatever you want to call it, um, non-disabled people is that it can be really scary to talk about ability and disability, but that, um, just starting the conversation is really important. And if you are a person without a disability, and you can say, actually, we really need to make sure that there’s a transcript for this video that we’ve produced.

Um, you’re taking a huge step in the right direction for your fellow scientists and fellow people who have disabilities. So, um, I guess just like take the scary leap and read about disabilities and advocacy and then try to advocate, um, alongside disabled advocates.

Mariel: Thank you so much for taking the time to talk to us it was really great to have you.

Lisa Berry Drago: Thanks for listening to this episode of Distillations.

Alexis Pedrick: Remember, Distillations is more than a podcast. It’s also a multimedia magazine.

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Lisa Berry Drago:  This episode was produced by Mariel Carr and Rigo Hernandez.

Alexis Pedrick:  And it was mixed by James Morrison. 

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Alexis Pedrick: For Distillations, I’m Alexis Pedrick.

Lisa Berry Drago:  And I’m Lisa Berry Drago. Thanks for listening.