Shining Your Light with Gigi Robinson

[00:37] Jennifer Milner: Welcome back to the Bendy Bodies Podcast, where we speak with experts bringing you state-of-the-art information to help you improve your well-being, enhance your performance, and optimize career longevity. This is co-host Jennifer Milner here with the Hypermobility MD, Linda Bluestein.

[00:50] Dr. Linda Bluestein: We are so glad you are here to learn tips to live your best bendy life. This information is for educational purposes only and is not a substitute for medical advice.

[00:57] Jennifer Milner: I'm Jennifer Milner, a former professional ballet and Broadway dancer, and I struggled my whole career with hypermobility-related injuries and issues. Now I train dancers and want to make sure the next generation of hypermobile artists are better equipped to work to their fullest potential.

[01:10] Dr. Linda Bluestein: I'm Dr. Linda Bluestein, and I started Bendy Bodies to educate the hypermobile community. Despite being a physician, I experienced decades of symptoms before being finally diagnosed with hypermobile EDS. I've combined my medical education and personal experience to treat and coach patients and clients to optimize their quality of life.

[01:26] Jennifer Milner: Our guest today is Gigi Robinson, content creator who is passionate about using her platform to raise awareness for EDS and chronic illness. Gigi's podcast, Everything You Need Is Within, discusses body image, chronic illness, mental health, and identity from a Gen Z point of view. Hello, Gigi, and welcome to Bendy Bodies.

[01:42] Gigi Robinson: Hi, thanks for the intro.

[01:43] Jennifer Milner: Absolutely.

[01:44] Dr. Linda Bluestein: We're super excited to chat with you.

[01:46] Gigi Robinson: I'm excited to be here. You're both really cool, and it's really fun to be interviewed by people who I haven't been interviewed by before, with unique and somewhat similar backgrounds as well.

[01:59] Jennifer Milner: Well, we are excited to dive into it. So before we go any further, can you tell us a little bit about who you are now, sort of what you do now?

[02:06] Gigi Robinson: Yeah, I like this question because it's about being in the present. Well, I just finished my master's degree less than a month ago. So today I guess you could say I'm a full-time public speaker and content creator. I have been doing it full-time, but in addition to school part-time, so at night. And so right now I'm just doing a lot of public speaking and advocacy work, working with different nonprofits, speaking to different companies and different organizations, and partnering with different brands that want to help me curate spaces for creators that are safe — where they can talk about things and not create content, or create content at their own pace, just to have fun and shoot photos with friends instead of going to an event for the sole purpose of taking photos and posting photos. Like you don't always have to do that. And so I think it's really cool that that's what I get to do and that's what I'm working on this year.

[03:03] Dr. Linda Bluestein: That's awesome. And there are so many things we want to discuss with you today, but let's start with your medical journey. You've said that you were diagnosed with Ehlers-Danlos syndrome when you were only 11. What led your family to seek medical help at that age?

[03:15] Gigi Robinson: Well, there are a few things, but luckily I live in New York City, so I grew up with incredible healthcare around me. My mom's a nurse, so I had great healthcare benefits through her. And I have one more year left on that, so I'm a little worried about it now. But just being around that, I think it was always like trying to ask a friend, where should I go, what should I do? And then I kept getting random injuries. I grew up with bruises, but everyone just thought, oh, she's just really clumsy, which I am. But at the same point, a bruise will still appear and I'm like, where did that come from? And so they just kept bringing me to the doctor.
[04:01] I think my mom told me that at one point when we were in the ER, one of the attendings was from the Hospital for Special Surgery, right next door to New York Presbyterian. And so that doctor recommended we go see the pediatric orthopedist there. That doctor took about two visits to figure it out. And then it was like, go to a geneticist, go to this rheumatologist, go to this one and that one, just to confirm the diagnosis.
[04:44] I literally just recently, in 2022, had the laparoscopy to see about endometriosis. And it's really interesting — I don't know if there are studies that correlate EDS to it or not. I see Dr. Bluestein smiling, so maybe she knows something I don't. But reflecting on it now, it's kind of frustrating to think that I've been searching for additional answers as to why I always have had this stomach pain, or bad back pain, or why does this exist? And now I have the answers 13 years later. It's kind of frustrating. But I'm hopeful — I think that's a good word in terms of my own health. What I want to do is help others get there now. So anyway, that was a little bit of a full scope.

[05:43] Jennifer Milner: Well, and it's important to note too — a lot of our listeners will start their story with, I knew something was wrong early on. But not everyone is as fortunate to get diagnosed as early as you were. So that's really fantastic. And it's going to continue to be a journey. As you know, it's taken you 13 years to know what you know now. Ten years from now, you're going to look back and go, oh my gosh, I learned so much more in the next ten years. It's that gift that keeps on giving. It's that onion that's never completely peeled.

[06:08] Gigi Robinson: Yeah. The onion. Exactly. I love that analogy.

[06:14] Dr. Linda Bluestein: And the endometriosis question is an interesting one. A lot of people in the EDS space suspect that there is a correlation, but it's hard because endometriosis is quite common and definitely underdiagnosed as well. And we know that EDS and endometriosis are both things that occur more in females, or at least these are things we see more in females. So it's harder to actually make a correlation between two things that are both more common, versus two things that are more rare — in terms of statistical analysis and designing a study and things like that. But we do know that mast cells can be involved, and we know that mast cells can be involved with EDS. So there's that connection.

[06:52] Gigi Robinson: Yeah, absolutely. My doctor basically said the same thing. She was like, I can't say yes and I can't say no, but I have seen a bunch of women with EDS who also have this. And I think that was also reassuring — that it's not just some random person who might not have any other health issues and all of a sudden just has it.
[07:13] Something I wanted to say, on the note of EDS getting more recognition recently — it's almost like it's finally getting the press it deserves. But it's still hard to make people around you understand fully what you're going through. And I just felt like that was something important to bring up, because people sometimes are just like, oh yeah, I have a friend who's sick, or my mom's sick. And it's like, yes, but this is hard to explain.

[07:55] Dr. Linda Bluestein: Yeah. And that's something that we hear a lot. I think one of the goals of the podcast is to help people feel less alone. And we get that message all the time — that people do feel less alone. Feeling alone is a really bad feeling and it's really hard. We also try to keep the conversation broad, because of course there are people listening to this who are going to have symptomatic joint hypermobility for another reason too, not just EDS.
[08:28] But I think it's really hard sometimes if people have not walked the walk — it's hard for family and friends to understand what it's like to live in a body that just doesn't behave like other people's bodies. Which leads me to wonder: with being diagnosed when you were 11, how did your health affect your choices through high school and beyond?

[08:52] Gigi Robinson: Yeah, this is a question that I think about a lot. I recently watched the Lizzo documentary on HBO Max — it's called Love, Lizzo — and very early on in the film she says, "Life doesn't take you very far from where you're supposed to be." I really thought that was a beautiful quote, especially because it doesn't dismiss the idea that everything happens for a reason. It's just kind of like, some things just happen, and as a result you're going to go somewhere, and it's where you're supposed to be no matter what, even if it's painful or upsetting.
[09:35] So when I was diagnosed with EDS, I was actually doing competitive swimming and I was really, really good at — guess what stroke?

[09:44] Jennifer Milner: Butterfly.

[09:46] Gigi Robinson: And nobody's naturally good at butterfly. You have to train to be good at butterfly. I just could rotate my shoulders so quickly. I had fractured my elbow first, and then I fractured my ankle, and then I had to kind of stop around then. My doctor said, if you keep swimming, you're going to have issues. You should just stop while you're ahead. And I'm 11, I'm growing up, I haven't even gotten my period yet — I don't know how I'm supposed to stop doing the thing I love.
So I ended up just doing something else, which was art. I always liked art — I was always a crafty girl. But I picked up my dad's camera and started just documenting as much as I could, making art, and using that almost as my escape. If I could learn something else and get really good at something else, then maybe I would feel accomplished, or better — and just the sense of learning almost became addictive to me, because it helped me focus on something other than how I was physically feeling. And to be honest, that has lasted all the way up until three weeks ago when I just finished grad school. So this is a very real thing I'm actually dealing with now — this entire realization that I was using school to dismiss my health issues. And my hobby even became that too.
[11:21] It became something that I really loved — I love telling people's stories and doing something that wasn't about me. It wasn't until I got to college that I dealt with ableism from my teachers. I went to the University of Southern California, which is 3,000 miles away from New York City, and everything I knew and all my doctors — I had to get reacquainted and explain myself, and go through doctors who said they understood EDS online but really didn't. And so it was really once I went through that that I realized that although I had a diagnosis, I didn't know how to stand up for myself and really advocate for myself, because it was like, I already have a diagnosis — what else is there to do, right?
[12:18] As I went through those experiences, I really learned a lot about communicating — knowing what I need to communicate, knowing how to communicate it, knowing when something's me being ridiculous versus something I wouldn't want from a friend or a partner or even a teacher. When do I seek extra assistance from the disability office? And as I was doing that, I was building my social media. Eventually I ended up sharing the art I was making. I was documenting people with EDS in the local EDS support group area for a project, because a teacher didn't believe me. So I was like, you better believe me now — let me show you.
[12:59] And then I did a series of self-portraits at the hospitals. I would literally sneak my camera in my backpack into the hospital. I always talk about this very lightly — I brought my camera and took photos inside the office of myself there. Those were my critiques. I did color studies. And as I did that, it was like a form of validating my experience. From that, it helped me have the power to talk about it. And as I talked about it in person, I also talked about it online. And that's really where it got me to where I am doing what I'm doing today.

[13:33] Jennifer Milner: That's so interesting. It's almost like a full circle. A lot of people talk about hitting that EDS wall — like they're great, they're great, they're great, until they're not. But it sounds more like you hit a preemptive wall when you were 11 and the doctor was like, well, you should just quit now. He may have been much gentler, but to hear something like that preemptively, and for you to think, okay, I'm going to figure out a workaround — you started pursuing something that didn't require you physically. You said you were documenting other people and looking at other things, creating art that wasn't so dependent on you physically. And yet it came around in this wonderful full circle where the art became sharing yourself in a very authentic way to educate others.
[14:17] So it's really interesting how you sort of grew into your diagnosis without really losing your stride. And I'm sure it was much more difficult than that — there were ups and downs, of course. But as you grew into it, so did your voice. And I think it's really interesting what you said: although you had a diagnosis, you hadn't really learned how to stand up for yourself and advocate for yourself. You did grow up in a wonderful bubble of knowledgeable medical people in your family who were able to advocate for you. Stepping out, you didn't just have to learn how to cook more than ramen noodles like most college students — you had to learn that some people won't take your diagnosis and go, oh, okay, I understand, I need to XYZ. You had to educate them. That's really such an amazing use of that time.
[15:10] One of the many hats that you have worn is that of a swimsuit model and also an advocate for body positivity. Did one thing encourage the other? Do you get a lot of feedback from teenagers struggling with body positivity?

[15:24] Gigi Robinson: Oh yeah. I think when I saw this one girl win with SI — she was from USC and I had met her before at college — and when that happened, I was like, if it's possible for her, it's also possible for me. So why not? When somebody does something, especially if it's within your reach, it makes a dream truly feel like reality for other people. And so I entered an open casting, and I just knew that I didn't want to do it for just any reason. SI is a very body-positive network for the most part, and they have been pretty inclusive of different body types, with the exception of disability and chronic illness. And I saw a lane and an opportunity to use my story to help other people.
[16:37] When it was announced, I can't tell you the number of messages I received from people saying, I feel seen for the first time ever — you are the person representing us. And that was the whole point of doing it. It wasn't about achieving SI status, although yes, that was part of it — but modeling full-time is not my life's work. My life's work is helping people, and what better way to do it? And also to help people with body positivity, specifically people who maybe can't always work out.
[17:25] I did this one interview during that time with the U.S. Sun, and it was on what I did to prep for the shoot. I really liked this interview because she asked me, did you get body sculpting, or work out, or change your diet? And I was like, no, I didn't. Because one, that's not who I am, but two, I don't have the spoons. I'm good just as I am. And I know that. If I had physically pushed myself, I would have felt miserable and I would not have performed my best. And talking about that was really important to me. So that was another part of the message — going and doing it without the body altering. Did I get a facial and a spray tan? Yes, because I wanted to treat myself — it was an exciting shoot. But that wasn't body altering. So yeah, that's a little bit more on that.

[18:37] Dr. Linda Bluestein: That's awesome. Now, just in case someone has been living under a rock — SI, you're talking about Sports Illustrated, right? The Swimsuit Edition. Can you back up slightly and explain for those listeners who might not be completely familiar?

[18:55] Gigi Robinson: Yeah, so there's this thing they have every year — they've had it the past couple of years — called the Swim Search, where they have an online open call casting for anyone who wants to enter. They call it being a "hopeful." And again, it really wasn't about doing it for the sake of getting into the magazine. It was doing it for the sake of spreading a mission. I literally felt called to enter it and I just went for it.
[19:25] And it was also really cool because it helped me raise awareness for EDS and it got a lot of press. I've been in Glamour, Allure, New York Post, U.S. Sun, Fox News, PopSugar — left and right about this. And I just thought, if the world needs me to be the EDS girl, then so be it. I will help people this way. And it's just been great to see people message me saying, I felt seen by this. I have some questions about EDS. And I can say, you know what, I'm not a doctor, so I'm going to suggest going to a rheumatologist or a geneticist or whatever kind of doctor it is. At the very least, I have my medical lived experience to hopefully point someone in the right direction — but not with medical advice. I want to help people at least get to the starting line instead of having to train for the marathon from scratch. I've already run it. I'm prepping for the rest of the marathons that I'll run in life, but I want to help people at least get to the starting line.

[20:52] Jennifer Milner: And that's just something that is not found in textbooks. It's just part of who you are. And it's fantastic that, like you said with Lizzo, life doesn't take you very far from where you're supposed to end up. It's great that this is where life has taken you and you are able to use this so much.
[21:07] Your advocacy is framed sort of from a Gen Z point of view, which I love. I have two Gen Z daughters, and they are very outspoken, and I'm extremely proud of that generation for learning to have a voice and for being so passionate. I think Gen Z gets a bad rap a lot of the time. And on your website, you recently posted the question: if you knew you could change the way Gen Z grows up, would you? Where did that question come from?

[21:34] Gigi Robinson: I think the question came up because during COVID specifically is when most Gen Z adults were entering the workforce, and there was a lot of conversation happening about how Gen Z is like a snowflake, or too emotionally unstable, or soft, or can't handle stress — all this weird commentary the world had about the generation. And I thought, why aren't leaders focused on helping the next generation instead of just criticizing it? How weird is it that older generations are more interested in saying, you are lazy and I'm mad about it, instead of saying, here are some things that could actually help shape the workplace, or jobs, or school, better?
[22:34] In addition to that, just my own experience in college and how I dealt with teachers — if I could help other younger people deal with teachers that way, then maybe they can have a better adulthood. I'm still amazed at how quickly older generations in the workplace are to just point a finger at Gen Zers and say, you guys are just lazy. And there are two considerations I would bring to the table. One is that we are a digital generation and we've lived under different communication styles than any generation before us — not to say that's a good thing or a bad thing, it just is. And the second is that it's really the leadership at these companies that's supposed to be open to new people, and we're just the new kids on the block. So why are you getting mad at young people entering the workforce? You were once there too, and I'm sure there were older people before saying the same things about those generations. I really thought that was an interesting reframe on what I was observing around me, and if I could help facilitate that, then that would be enough for me.

[24:00] Jennifer Milner: You're facilitating a lot of things, so that's just one more. But what I find interesting is that in today's climate, so much of it — and there was an article in the New York Times recently about how 2022 was sort of the year when it just went too far, that everybody's mad and everybody's yelling at each other, and some things are going beyond irreparable. So much of what we do on social media and online is to argue without listening. A lot of Gen Zers, when people say "snowflake," they say, no we're not. And you're going, why do you feel that way, and what can we do to change that, what could you do to support us? So it's not just being on the other side of the argument — you're saying, hey, let's fix it. Which is really amazing to see from someone at such a young age.

[25:55] Gigi Robinson: And I feel like I have done that with my advocacy for body positivity and for EDS. I think our generation has been speaking up because we are so tech savvy, and because we were in isolation for a year and using that time. There was so much social justice going on as well. But I just have to ask — was there any support or pivotal person in your life that mentored you or showed you that way of facilitating and mentoring others?

[26:27] Gigi Robinson: Yeah, this is a fantastic question. I grew up in a Tony Robbins household. And if there's anything I've learned from that, it's that you don't need to take every piece of the pie from a certain kind of learning. Is he 100% right? No. There are some things that don't resonate with me from his teachings, and that's okay.
[26:58] Something I did leave out of my medical history is that I really did have a mind-over-matter situation where I was like, it's going to get better if I just do PT or if I just ignore it or distract myself. I didn't take medication until August of 2021. So it's still relatively new in my life, and only good things have happened since I accepted that. But I think part of it was just always trying to have a positive reframe on things — while also acknowledging that you can still feel sad about the situation. You can choose to also have a reframe. You can choose to have a positive thought. And honestly, I just like feeling happy more than I like feeling sad.
[27:22] Part of it is just me, and part of it is having gone through UPW before — Tony Robbins' basic conference. I resonated with a lot of it. I love motivational speakers like Mel Robbins, Gabby Bernstein, and Ed Mylett. I listen to all of them here and there. There's just so much sad, negative stuff out there. And on the note of Gen Z being so "snowflakey" — it's like we're thinking about, is it even worth it to buy property now, because the economy's so bad, or because our house could get destroyed in a natural disaster, or is the climate going to be safe in 50 years?
[28:37] I think our generation is really the generation that's going to see the decisions of older people play out. And that's really scary. We're seeing natural disasters and record-breaking heat and cold. And we're so connected to our phones that we're receiving so much of that information without even choosing to — it's just coming at us through our feed. It's integrated into algorithms. It's not even something we chose to look up. So when I think about that and have conversations with my friends about the serious stuff, the only thing I'm thinking about is, how can we focus on positive things in these moments?

[29:45] Dr. Linda Bluestein: And we are living in some really heavy times. I think it's great that you're speaking about mental health, especially because for your generation, it's nothing like what I went through when I was young. It is a lot. And I think it's wonderful that you are advocating not just in terms of chronic illness, but also mental health. How did that become something that you wanted to speak about?

[30:16] Gigi Robinson: I think that body image, mental health, and physical health are all connected. They are — it's not even that I think that, they just are. Especially for people who live with chronic health conditions, and especially for every person with EDS that I've talked to. You can't work out because you don't feel good, or you're scared you're going to push yourself and hurt yourself, or you do that one too many times and you take one step forward and five steps backward. And then you don't work out, and then you either get negative comments or you feel bad about yourself in your mind. So then you're not motivated to work out or do anything productive. And so then it's just a cycle. Then you're like, fine, I'm going to start it — and you almost binge. You push it too far. It's like you're trying to compensate. I can never just start something at 20%. If I'm doing a yoga class, I want to be able to do it all. If I start it and can't continue through the flow, I'll get sad and just sit there and meditate, and then I'll feel sad that I didn't go through it. So it's all connected.
[31:25] That was again part of the reason why I took the stance I did with SI — no retouching, no going crazy with the workout or the diet or anything. With EDS specifically, I've had a lot of issues with eating because I've had stomach issues. Doctors can't even explain what makes my stomach react. I've tried everything — a low-FODMAP diet, going completely vegan at times, cutting out anything inflammatory or nightshades — just everything. And while eating on a vegan diet gives me less acid reflux sometimes, I still get sick from eating lettuce sometimes. A salad will just trigger me. So I can't win. And then I'm like, what is wrong with me? I feel bad, my brain's in a bad place, and now I'm getting body dysmorphia because if I eat, I'm sick, and if I don't eat, I'm hungry and feel sick. So what's the middle ground?
[32:33] And then just the mental pressure of what happened in college — where the people I was literally paying to be in their classes were saying, you're just copping out, you're being a lazy student, I don't believe you. This one was my favorite: the teacher said, I don't believe that this is a real Office of Accessibility portal — you must have Photoshopped this. And I'm like, you think I'm going to go out of my way to code a fake website just to get to use my computer for notes? I have a 504 disability accommodation. Why are you behaving like this as a grown adult? It's just embarrassing for them. But in that moment, I didn't know how to say, take it up with the appropriate person. I don't know what to tell you. Why would I lie about that? And it's also a matter of, if I did say something, would it jeopardize my grade?
[33:31] Students deal with this a lot. And so over the past two years, it's just been really great to help students. I had someone on my team for a while who had a chronic health issue, and I was able to help them write letters to their teachers about needing the accommodation — what to put in it, the language to use, and how to do it. Instead of writing it in a way that's like, would it be okay? or I just kind of wanted to say this might be what I need — you assert yourself. When you have a health issue, you have to assert yourself in the school situation, or else the teachers won't be receptive. And so that's just kind of why I'm so passionate about it — to help people through what I've learned. If I've gone through it, I don't want other people to, and it kind of makes it worth it for me. Net positive.

[34:35] Dr. Linda Bluestein: And paying it forward like that is such a huge thing. I remember a therapist asked me many years ago, can you see any positive in what's happening to you right now? And I remember being kind of offended by the question — like, no, my life's falling apart, I'm in pain 24/7. But later, looking back, I've obviously been able to take all these things that happened to me and use them to help other people. At the time, it can be really hard to view it that way.
[35:08] And the college student thing especially is hard, because they're adults — grown adults. So you're not talking about elementary school kids or high school kids. They're adults. And I was curious to ask — how do you manage your daily life in a way that takes your chronic issues into account and also allows you to pace yourself?

[35:32] Gigi Robinson: Yeah, great question. Something that's been really helpful for me has been working with integrative wellness doctors. And something important to note is that you're allowed to use both Eastern and Western medicine. It doesn't have to be one or the other. I just got diagnosed with endometriosis and I don't have a choice but to be on an IUD or birth control of some sort to help manage that. With my pain, I don't have a choice but to be on Lyrica to help me feel and perform my best right now. And for my chronic migraines and nausea, I use the medicines that have been developed in the Western world. And I'm also allowed to go to acupuncture, get different kinds of herbs, follow an Ayurvedic diet, eat at certain times, meditate, and get massage therapy. You can do it all in tandem. If anyone listening has any question about whether they should go see someone who's truly open and experienced in integrating different approaches — it's about what's going to help you the most. For me, it's a little bit of both, and that's okay.
[37:02] Second to that — those specific doctors always say that sleep is one of the most important things you can do. In the past I've had trouble with that because my degree was pretty much remote and I was doing West Coast hours on the East Coast at night. I was up until 12:30 and I couldn't shut off. I love waking up early in the morning — I feel my best, I feel energized, I have more productive days when I wake up early. And I just wasn't able to do that for the past two years. So I think recognizing that and realizing that now is the time in my life where I'm finally going to actually be able to regulate my sleep for once — I'm really excited about that.
And with this new chronic condition added to my list, I'm thinking about what I can do to help my eating routines through these hormonal challenges. I think it's also really important to give yourself grace. From what I've heard and what doctors have said, even just waking up at the same time for a week, or not eating gluten and dairy for a week — you just feel better. But it's okay if you slip up. You're allowed to slip up. We're still human. If we weren't slipping up, we'd be robots. And we're not.

[38:43] Jennifer Milner: That is very true. And I know that you have learned so much about yourself and how to take care of yourself and advocate for yourself along the way. And at the same time, you are very open about your support team and having people around you who can help you. Is there advice that you would offer loved ones and caregivers of people with chronic illness? What would you want people to know about walking alongside someone like you?

[39:05] Gigi Robinson: Yeah, this is actually a great question. I've been talking about this with one of my friends who not only has a chronic health issue themselves, but their family member also does — to the point where that family member can't even work, whereas my friend still functions.
[39:25] A lot of times I think I have done my best to do it all, and I feel like I don't want to burden anyone else with my health issues. Like, I already have to walk red carpets and go on camera and do interviews that are broadcasted — and for some people that's already too much, and that's okay. You don't have to be everyone's cup of tea. But when it comes to health stuff, that's something that really can't be changed. Someone is either going to be a jerk about it, or they're going to tolerate it, or they're going to go above and beyond because they want you to be taken care of so you can focus on shining your light. That's a new perspective I didn't have before. I've always been like, I'm too much, why would anybody want to deal with this? And that's based on certain experiences I've had with friends.
It's just never been something where I felt taken care of and appreciated despite living with health issues. So I think having an open mind and knowing that you aren't too much is important. And caregivers — asking questions like, is there anything I can do? But the worst thing would be to lord that over someone's head afterward — like, well, I helped you when you were sick. That's the worst.
[41:06] But to anyone living with health issues — be unafraid to ask. You know what, would you be able to bring me some tea or an ice pack? That would actually be really helpful. It can be little things. I've really appreciated people being there and offering help, and also reciprocating when I ask them to do something. That's been a pivotal realization as I've grown up. And it's been really hard for me to get to this point — I'm 24 and some people say that's young, some say that's old. But I've always just felt like I've needed to learn this lesson.
[41:53] I've felt like my illness is a burden, especially in new relationships, friendships, and workplaces. And I've learned that if there's ever a time where I feel like I should say something about my health, then it's the right time. There's no right time other than the one you feel is right. And when that happens, it'll give me one of two answers: somebody's a jerk and they're probably not someone I sincerely need in my life — or somebody's amazing and I'm super appreciative that they're willing to go above and beyond to help me. Those are kind of my insights on those situations.

[42:44] Jennifer Milner: Well, this is great insight. I know a lot of us with chronic illnesses feel like we are a burden. And I love what you said about finding those caregivers or friends or loved ones who want to do whatever they can to support you, but also want you to be able to shine your light. It's the people who understand — oh, you can't go out with me tonight? Okay, I will not guilt you into it. I won't say, how come you went out with so-and-so last week but you didn't go out with me this week? Well, I had more spoons last week. And I haven't done my dishes yet, so I have no more spoons. That's really wise to see it that way.

[43:22] Gigi Robinson: And it's really hard when it's fresh or new — in college when you're just figuring out how to live on your own, how to pay your rent, how to keep going to school and make sure you're going to your doctor's appointments. The hardest one for me was friends who didn't understand why I couldn't go out. And so instead of saying, oh, what would you want to do instead, it was just, we're going to completely stop hanging out because the only thing we do together is go out and party, and you can't party anymore. And because you can't party, our friendship's over and you're a bad friend for not supporting me by going out. And that's a really crappy feeling. Not internalizing that — recognizing that it was somebody else's judgment of who I am and where I was — that took processing and talking about it to realize. And you're not alone. I think a lot of people go through that.

[44:13] Dr. Linda Bluestein: And I think it's really important to recognize that for some people, their supportive relationships are going to come from within their family, but in other cases they won't. A couple of things I often tell people: number one, you may need to love your family from afar. Lots of people have grown up in family situations that were pretty challenging, and some separation for some people is actually healthier than continuing to try and try and try — because you may or may not get the support you're looking for from that person.
[44:47] Building a supportive network of not just healthcare professionals, but other people too — and I love what you said about being appreciative, because everyone has something.

[44:55] Gigi Robinson: Everyone has something.

[44:58] Dr. Linda Bluestein: We're all dealing with stuff. So I think it's really important as the person with chronic illness, as you're developing relationships outside of your family, to show that appreciation and reciprocate where you can. Because we all have individual needs and we're entitled to that. And I see some people expecting their spouse to be everything for them. So those things can be tricky.

[45:20] Gigi Robinson: And something that kind of scares me, from seeing it on social media and from talking to people — and hearing that reaffirms that this exists — is that savior complex—

[45:24] Dr. Linda Bluestein: yes—

[45:36] Gigi Robinson: of a spouse who does all the acts of service and then kind of gaslights you when you can't reciprocate. That is probably my biggest fear. I have no reason to truly believe this would happen to me, but I've seen it happen to friends and it just hurts. And I think sometimes it's better to not involve myself in situations than to feel that kind of hurt or betrayal from somebody who — you might think, I thought they loved me. And it might not be that they didn't love you, but that they thought they could nurture you back to health. And with EDS, or endometriosis, or other chronic health issues, sometimes you can outgrow them, sometimes they're lifelong. You just don't know. And so thinking about this at 24 scares me a lot. And I've also dealt with versions of this in friendships — oh, well, I made you dinner that one night and you can't come out with me now?

[46:41] Jennifer Milner: Right.

[46:42] Dr. Linda Bluestein: Yeah, I know that is hard. And that savior complex is a real thing. I work with a lot of parents of ill children and a lot of couples — I've done a fair bit of couples counseling — and whether it's parents or loved ones in general, if you can be more emotionally neutral, it's better. Better than smothering, obviously better than being negative or belittling. In general, if you can try to take the emotion out of it and be more factual — maybe the person says, I really need to get out of the house because I need some time for me — do it without saying it in a nasty way, without guilting, without the dynamics you were describing. I think those are excellent points you're raising.

[47:30] Jennifer Milner: Yeah. Well, we have covered so many things. Is there anything that we didn't cover that you wanted to make sure we touched on?

[47:35] Gigi Robinson: I think this has been a really fabulous conversation. And hearing that you've talked to so many parents about this — that's just a sign that it's not all on the patient. There's a lot of coaching and guidance that could be done for caregivers. And I think it has to do with emotional intelligence and just being a good person. There are so many things that go into it, but overall there's a lot that still needs to be done. And that's where I think I come in as an advocate — I have my lived experience and I'm able to say, here's what worked, here's what hasn't worked. And I can come to people like Dr. Bluestein who are licensed professionals and say, what can we give as a takeaway that's not necessarily medical advice, but something more credible than just your average patient?
[48:47] I think that's another fear of mine at times — people say, why are you advocating for mental health or chronic health issues? You're not a doctor. And I'm like, you don't have to be. Everyone has something.

[48:55] Jennifer Milner: You don't.

[48:59] Gigi Robinson: And it's okay.

[48:59] Jennifer Milner: And it's great that you differentiate, because Dr. Bluestein is an expert medically in these fields, and I am an advocate in these fields. I don't pretend to be an expert. And I'm an expert in the Pilates session, and she's an advocate because she knows what it feels like on her body.

[49:00] Gigi Robinson: Yes, as a patient. And it's like we should all just work together to help everybody feel less alone in their chronic health journey, and hopefully help them in the way they're living their life. So yeah, that's what I have to say. It was really, really such a pleasure talking to both of you.

[49:35] Jennifer Milner: Well, it's been fantastic speaking with you. And I think what we said earlier about hitting that EDS wall — it's like you never hit the wall. Life gave you a lemon and you were like, oh, I'll make lemonade. Life gives you another lemon and you're like, oh, I'll make limoncello. And then you get to walk around these baskets of lemons, and the more lemons you get, the more different things you're making, and you're feeding all of these people. It's really wonderful how you have just continued to turn outward with it and use your experiences. If people want to learn more about you, want to listen to what you have to say, where can they find you?

[50:07] Gigi Robinson: Thank you again — I love that, and I love lemon pound cake and lemon poppy seed muffins too, so you're not far off. You can Google me — Gigi Robinson. You can find me at the handle itsgigi Robinson on all social platforms. And my website is gigirobinson.com. My podcast is Everything You Need Is Within, and that's available streaming anywhere and everywhere. If you have a question or you enjoyed it, I always love the feedback and hearing back from people. It was just so incredible to chat with you both. Thank you.

[50:42] Jennifer Milner: Awesome. Thank you.

[50:43] Dr. Linda Bluestein: I just wanted to say how much I enjoyed chatting with you, Gigi. You are such an inspiration. And I love, love, love the name of your podcast — I think that's truly brilliant. So many of us start looking outward for solutions to things, and we have so much more control over ourselves than over anything else. I think that's just wonderful. And I'm so grateful to you for coming on the show.

[51:15] Gigi Robinson: Thank you.

[52:15] Jennifer Milner: Well, you have been listening to Bendy Bodies with the Hypermobility MD, and our guest today was Gigi Robinson. Gigi, thank you one more time for coming on the show and sharing your story with us. If you love what you learned, follow the Bendy Bodies podcast to avoid missing future episodes. Screenshot this episode, tagging us in your story so we can connect. Our website is www.bendybodypodcast.com. Follow us on Instagram @bendy_bodies. We love seeing your posts and stories, so please tag us using #bendybuddy. Please leave a review and share the podcast to help us spread the word about hypermobility and associated conditions. This information is not intended to diagnose, treat, cure, or prevent any disease. The information shared is for educational purposes only and is not a substitute for medical advice, diagnosis, or treatment. Please refer to your local qualified health practitioner for all medical concerns. We will catch you next time on the Bendy Bodies Podcast.