Advocating for Yourself with Aidan Leslie

[00:35] Jennifer Milner: Welcome back to Bendy Bodies with the Hypermobility MD, where we explore the intersection of health and hypermobility, focusing on dancers and other aesthetic athletes. This is co-host Jennifer Milner here with the founder of Bendy Bodies, Dr. Linda Bluestein.

[00:51] Dr. Linda Bluestein: Our goal is to bring you state-of-the-art medical information to help you live your best life. Please remember to always consult with your own healthcare team before making any changes to your routine.

[01:01] Jennifer Milner: Our guest today is retired dancer and Bendy Bodies' own EDS Wellness Ambassador, Aidan Leslie. Aidan, hello and welcome to Bendy Bodies.

[01:23] Aidan Leslie: Hi, thank you for having me. I'm so excited to be here.

Jennifer Milner: Yay! So Aidan, for those who don't know you as our wellness ambassador and don't know your story, could you tell us a bit about your health journey?

[01:36] Aidan Leslie: Of course. So I grew up as a dancer, first competitive, and then I became a pre-professional ballet dancer. When I was about 15, I started struggling with gaining muscle and keeping up with the intense cardio required for ballet, and with frequent injuries. It was around that time that I reached out and started working with some other people in the medical world, and I discovered and was diagnosed with Ehlers-Danlos syndrome.
[02:03] Then when I was 17, I like to say I hit the EDS wall, and everything that could go wrong went wrong all at once. I started having more symptoms and it really sort of put a full stop on my life. But I am fighting back to take back my life, and I am really excited to go on that journey and see where it takes me.

[02:25] Jennifer Milner: Excellent. That's fabulous. And at what point did you realize that you were not a typical teen going through a rough patch, but a person learning how to live with a chronic illness?

[02:36] Aidan Leslie: It took quite a while for me to figure that out. I was diagnosed with EDS while I was still dancing and I was having to work around that, if you will, and had to come up with some creative solutions — like having two water bottles, one that had electrolytes and everything — but I wasn't really considering myself to be different than anyone else in the room. It was just sort of some adjustments I had to make.
[03:02] But after I hit that EDS wall and I started having a really severe headache — a migraine-like headache that would not go away no matter what I did, and I still have it — this was about probably about six months into having that. I met up with some of my friends who I had danced with, but they had all kind of gone on in their lives and gone to college or been working professionally. I was listening to them speak and talk about their lives and realized that we were on completely different planets. My problems that I was facing in my daily life were vastly different from theirs. While we grew up together and we were great friends and we still had a really great relationship, I realized that I was on a different path than them, and that that was perfectly okay. Everyone's on their own path and everyone finds their own way. But sometimes, especially if you have hypermobility, your path might be a little bit different from other people around you.

Jennifer Milner: I remember, Aidan — because you and I work together regularly — I remember you said that there was a turning point for you when you stopped trying to think of yourself as, "Oh, I just need to get through this headache," or "I just need to get through this stomach ache," and you realized, "Hey, I have a chronic illness and I have to live my life differently." Like, it changed the way you live your day-to-day life and the way that you approached your long-term care. Can you talk a little bit about that?

[04:28] Aidan Leslie: Absolutely. That was, again, after I hit the EDS wall — everything kind of trying to change — that was such a big pivot point for me. But even for several months after that, it felt like I was treating symptoms. Something would happen and I'd try and take care of it. Sometimes that solution worked, sometimes it didn't. But everything I felt like I was doing was very reactionary. There was a problem and I would try and fix it.
[04:52] I reached a point probably a year into having really severe EDS symptoms — and then kind of getting worse and worse and new ones popping up in the way that hypermobility symptoms love to do — where I started realizing I needed to be more proactive. Just addressing problems as they came up was never going to fix things, was never going to minimize the amount of damage the problems were doing to start with. About a year into really having to deal with symptoms on a daily basis, I realized I need to start treating myself proactively and try to minimize as much as I can and take care of myself. Not like, "Oh, I have this headache once" — as you said — but it's not a come-and-go headache. You're in it for the long haul. It's a marathon, not a sprint. You have to work with that and think about it in that way.

[05:48] Jennifer Milner: So I know that you have been in and out of so many clinics and hospitals for acute things and chronic things. What has your experience been like dealing with the medical world, both as someone who started this journey as a minor, and also as someone who has a largely invisible illness?

[06:07] Aidan Leslie: It's definitely been an adventure. I really first started seeing doctors and trying to work on my symptoms as they were getting worse when I was about 17. In my experience, in the beginning they were all really fantastic. They all really tried to help me figure out what was wrong and tried some great approaches and different things. But after a couple of years of trying new things and not a whole lot getting better, I think the doctors I was seeing sort of ran out of treatments for me. They didn't quite know what to do with me.
[06:42] A lot of my symptoms, because it was an invisible illness, you couldn't necessarily measure them. It's very hard to figure out a way to quantify and measure a headache if you're not the one experiencing it. And it's really hard to quantify and measure fatigue if you're not the one experiencing it. So I think it was a bit of a communication issue, because it's so hard to express what you're feeling in a way that makes sense from a doctor's side — in the same way that sometimes a doctor is saying everything right, but it's hard from a patient's side to hear it. It was a bit tricky for the first several years until I found doctors I was comfortable with, who we sort of spoke the same language.
[07:25] There were definitely some hiccups on the road. When I was about 18, around Christmas time, I started having really severe stomach problems and I dropped about 15 pounds in one month. I went to the doctor because that is not good. I said, "Hey, I am nauseous all the time. I dropped this much weight so quickly — something is wrong. Can you please help me?"
[08:03] The doctor wasn't in my body and they weren't seeing me every single day, so they had no idea what was happening. They didn't know either. I luckily had seen a YouTuber named Life with Stripes on YouTube who had very similar symptoms to mine, and she was talking about how she had gastroparesis. This was back before EDS really became as talked about as it is now. I saw her talk about it, and I did my research. I went on to the Mayo Clinic website. I looked at studies about EDS and about gastroparesis. And I went into my doctor and I said, "Is there any credibility here? Is this possible?"
[08:47] My doctor sort of said no, there's no reason for you to have that. It was heavily implied that he thought it was an eating disorder, and he sort of threatened to put me on a feeding tube unless I started gaining the weight back. That was not productive to me. I went into a bit of a spiral during that appointment. Am I crazy? Am I doing this to myself? Is there not actually something wrong?
[09:23] But I looked at it objectively. I pulled back and I said, okay, I'm not doing this. This is not in my head. You don't drop 15 pounds in four weeks over nothing. This was serious. Something was wrong. I did more research and I went back and I said, "Can we please just do the test?" I did not go in saying, "Here's my Facebook comment — some of my dog walker's third cousin's girlfriend thought I could have this." I went in with credible research and I said, "Can we please just try this test?" after nothing else was working. And lo and behold, they did the test, and it came back that I had gastroparesis.
[10:02] So there's definitely been a lot of walking that line between respecting doctors, because they do know the human body — they went to medical school, they know more about the human body than I do — but also respecting myself, because I know more about my body than the doctor I'm talking to does. So it's been a lot of walking that line between respecting and also advocating for myself.

[10:21] Jennifer Milner: That is a fine line to walk. And it is something that you have been practicing now for a while and sort of growing into. So what have you learned about interacting with medical professionals throughout all of this? And what sort of tips might you offer other people dealing with a bewildering array of issues?

[10:54] Aidan Leslie: Absolutely. "Bewildering" is a really good word for it. Definitely do your research, and make sure it's from credible resources — use a study, go in prepared. But don't go doctor-chasing — that's a big one. Just because the first doctor doesn't necessarily work out, don't keep going to so many doctors about the same issue just so you get the answer you want. At some point, there's going to need to be some give and take. Definitely do your research, make sure you're using credible resources, and it's all about walking that line.
[11:40] I would also say make sure that before you go in, you think about specifically what you want to say. It's a lot easier, especially if you end up having to push back against the pushback a little bit, when you go in knowing from the get-go what you want to talk about. I did this with my mom when I was a minor going to all these appointments — we'd sit down and write out symptoms, what we had tried, dates that I'd taken things, dates of things that happened, all that sort of thing, just to get everything figured out before we went in. It was a lot easier when you go in having all of that, even if it's just written out. I had a three-inch binder full of all my medical files when I was really going through it.
[12:27] So I would say: definitely do your research, do your credible research, and think about what you want to say before you go in.

[12:33] Dr. Linda Bluestein: Those are all great, great tips. And has advocating for yourself come naturally to you, or did you have to build it up like a muscle?

[12:41] Aidan Leslie: Oh no, it did not come naturally to me at all. If you know me in person, I'm a very shy person with a tremendous amount of social anxiety. If you meet me in the wild, I was not one of those people that walked into a doctor's office and just started chatting and having a great time. I was very quiet. So actually having to use my voice — quite literally and also figuratively — and say, "No, can we look at this again? Can we try something else?" did not come easy to me. It was definitely something I had to build up.
[13:15] I like to think it got easier the more I went on, because once you do that — especially after I had my gastroparesis test come back positive — that was really a great boost. For the future, it kept me saying, "Okay, I was right." And it didn't work every time. Sometimes you go in and say, "Hey, can we look at this?" and they say no, and sometimes they're right. But just having that — once you get over that initial hurdle and it works — it gives you a great boost to continue doing that in the future.

[13:52] Jennifer Milner: That's so true. And you mentioned earlier that it's important to do your research before you go into a medical appointment, to gather your information and have it all in one spot. Are there any other bits of practical advice that you would give to someone trying to get ready for a medical appointment?

[14:15] Aidan Leslie: Just as much as you're doing your research, sort of research your own body too, if that makes sense. Keep track of as much as you can. If you're going in for a lot of appointments about headaches, if you keep a headache diary, it's a lot easier for doctors to visually see it. I think it just helps in that communication process. So if you can keep track of your symptoms in a diary or a log — I remember I went through a phase where I had a bullet journal and I made it all cute. It was pink and sparkly and had flowers on it, because sometimes you need to take your very clinical-looking headache diary and make it personal and fun so it's not just drab pain all the time.
[14:53] So as much as you're researching what could be happening, make sure that you are also researching what is happening right now. I think that's a really great tip to help, again, aid in that communication between doctors and patients.

[15:10] Jennifer Milner: I love that. That's great. Thank you. So Dr. Bluestein, as someone who is on the other side of the table in those appointments, so to speak, does Aidan's experience sound typical for someone with chronic illness?

[15:22] Dr. Linda Bluestein: What Aidan is describing is very typical for someone with a condition like EDS. EDS — Ehlers-Danlos syndrome — is a very multi-systemic condition. For most physicians, they have not only no idea what it's like to live in an EDS body, but they can't even really wrap their brains around it. It's just so hard to fathom how so many different things could be going on. I sometimes draw this out as a graph for people: if you're experiencing this many symptoms and your doctor has never experienced more than a few, that's a huge gap to try to fill. So it's extremely common for people dealing with such complex conditions.
Aidan described it very well — for a lot of these things, you can't measure them well. A lot of the imaging studies are going to come back normal. The labs are going to come back normal. And sometimes the doctors misinterpret the fact that you're almost disappointed when they come back normal. I've been there. I'm on both sides of the prescription pad, and the stethoscope — or any other analogy you want to use — because I also have EDS. So I definitely understand that feeling when the test is normal and you're kind of disappointed because you were hoping for an explanation.
[16:48] Sometimes that can almost turn off the healthcare professional, because they almost think that you want to be sick when really you don't. You just want to know why you don't feel well.

[16:59] Aidan Leslie: That does make sense. I've definitely been on that side. It's a very great explanation of what I've seen — that switch that happens when you look terrified that there's nothing wrong, and they think you're searching for something to be wrong, when really you're just searching for a way to get better. That's a great point. Thank you.
[17:25] So what sort of advice would you offer people to help prepare for those medical appointments?

[17:34] Dr. Linda Bluestein: Preparation is so extremely important. I recommend that people first start out by thinking about their goals. What is it that they want to get out of this next appointment? And try not to bring previous appointments into that next appointment with you. Try to start with a clean slate, especially if it's a new provider you're seeing for the first time. Maybe it's a neurologist and you've already seen a couple of them. If possible, try to give this person a fair chance, because sometimes people come in to appointments with a preconceived notion about how things are going to go that is not going to be helpful for them.
Like Aidan said, you can definitely benefit from rehearsing with a family member and having that person really help you define what it is that you want to present in terms of the information, because sometimes when you're in that setting, you either forget what to say or you're intimidated and you don't say what you wanted to say. So it helps, if possible, to have the same person who helps you prepare go with you to the appointment so that they can nudge you and say, "Hey, remember you wanted to talk about such and such."
[18:53] I think that can be very helpful, especially with teenagers. I see a lot of teenage patients — females in particular — and it's hard enough going through those teenage years without having chronic illness, but add chronic illness on top of it. I think especially as ballet dancers, we're used to being compliant. We're told to do certain things and we go along. We tend to be perfectionistic. So when things start to go not perfectly with our bodies, sometimes we can blame ourselves, and it can be very frustrating. Having somebody who can really help give us that confidence, I think, can be very important and really help us get what we need out of that appointment.
[19:39] So make sure that you prepare, that you plan, you set out your goals. Also, you would be shocked at how many people — even people who see me for appointments — have not filled out their forms or have not done their medication reconciliation. I'm in the middle of an appointment, preparing to write a prescription, and I say, "I see you're on these medications." And the response is, "No, that's not what I'm taking, and that's not the right dose." So make sure that all of that is as accurate as possible, because that will help make the appointment more efficient.
[20:16] I know it can feel like so much homework. When I went to my first pain clinic appointment, which was hard enough in the first place, answering those questions seemed like, "Well, why does all of this matter?" But it really does. These are things we need to know in order to develop a good plan. Take all of that seriously — make sure the medications are complete and up to date, and if you're on any supplements, that that's complete and up to date too — because you will not only get more out of the appointment, but it also builds credibility with the healthcare professional. If they see that you are taking this seriously and that you have done all of that homework on the front end, then I think that really sets the stage for them to understand that you are somebody who really does want to get better.

[21:12] Aidan Leslie: That's a fantastic point. Credibility is a very important part of it on the patient side, because if you're someone who goes in every other week and says, "Hey, my great-grandma said I have this," but you've done no other homework and you don't have any forms filled out — I think it's a lot harder to get taken seriously. And I think it makes it a little bit harder for the rest of us who are doing our homework to get taken seriously. It's very important to build that credibility, to do your homework and go in prepared, because it sets you off on a better foot for all your appointments.
[21:50] We expect, when we're going in to see a doctor — we think we're paying them, we expect them to do all of the work, we're going to them for answers — but doctors have a very narrow amount of time to see you. None of them are going in thinking, "How can I just waste the 10 minutes I have until I can get out of the room?" They want to get the most out of that time with you as well, because they want to have the most efficient meeting possible so that they can get you the best answer, the best feedback. So doing your homework — while I hate sitting and filling out those 20 pages — it is helpful. It is helpful to get it done in advance so that you don't show up and have to fill it out at the time when you should be back in the room with the doctor.
[22:35] And those little things can make a huge difference, I imagine, to the doctor, to their schedule, and their thought of, "Hm, this person is organized. They have brought in their pain journal. They have brought in an updated list of meds. Let me see what I can do for them from here."

[22:51] Dr. Linda Bluestein: Aidan raised an excellent point that I wanted to jump off of real quick. Just in the same way that patients may prejudge based on other experiences with other physicians, we may prejudge based on other experiences with other patients. It's not fair, but we're all human beings and we're all shaped by our experiences. So if you go in and you demonstrate that you are prepared and that you are willing to do the work — because there is no magic cure for EDS or any of the associated conditions. They all require a lot of work. These are lifelong things that require constant care of the body and attention.
[23:49] Just like you don't want to be dragging along your doctor, your doctor doesn't want to be dragging you along. You want to be walking hand in hand together through this journey, and you want to be demonstrating to each other that you are wanting to be on a team together.

[24:02] Aidan Leslie: That is great. Thank you. So let's talk about being proactive, Dr. Bluestein. What can we do in that meeting to try to be proactive? We've done our homework, we filled out our forms, we've brought in our pain journal. Is there anything else that we can do?

[24:29] Dr. Linda Bluestein: When we go through medical school, we spend a lot of time learning how to extract information from people and what to focus on. It's understandable that as appointments have gotten shorter and shorter, it's hard for patients to necessarily know what they should focus on. But that's where — as Aidan mentioned about the three-ring binder — it's helpful to keep that three-ring binder or the headache journal or any of those kinds of things, and at the same time have what I call a one-sheet: a single page with the most pertinent things. Keep it as a Word document or whatever, so you're constantly updating it as more important things come into play.
[25:17] It's kind of a little bit unfair to expect patients to do this, but it's the reality of the situation we're in. We are in an environment of extremely dysfunctional healthcare, and unfortunately, people with conditions like EDS and other hypermobility disorders and connective tissue disorders are at the shortest end of the stick, because these conditions are mostly invisible and multi-systemic. It is very hard for most physicians to understand what it must be like to walk around in a body that works like this. It's the exact opposite of going into an appointment with a fractured arm where the bone is sticking out — everyone can see that and relate to it. It's just really hard for most providers to relate to an invisible illness.
[26:19] So whenever possible, focus on more specific symptoms rather than less specific ones. Really think through what your symptoms are so that you can be consistent with your story, because sometimes people will tell their story a little bit differently the second time, and then a little differently the third time. Especially if you're at a teaching institution, the intern has taken your history, then maybe a resident, and then the attending comes in — and now you've told a slightly different story each time, and everyone's looking at each other like, "What just happened?" when really it's more a matter of thinking ahead about what the answers are. It may not matter whether you get palpitations four times a day or five times a day, but you want to stay consistent when you can. More specific is often more valuable than less specific.
[27:16] Remember that we're looking for patterns. We're playing detective with the limited amount of time we usually have available. We're trying to put together the information you're giving us into something that fits with a diagnostic category that makes the most sense.
With Aidan's example of gastroparesis — depending on how familiar that doctor is with gastroparesis or when they last read about it — I love what she said about bringing in an article. That's much better than saying, "Someone on Facebook thought I had this," even if it turns out to be true. It doesn't matter. It's much better to look for an open-access journal article, print it, highlight a couple of key lines, and keep it super simple and straightforward. Those kinds of things, I believe, will make it much more likely that you can connect with your doctor in a way that they become your ally, rather than seeing you as someone they don't know what to do with.

[28:28] Aidan Leslie: Yeah, and that's a great point. I love what you said about the one-sheet. That's a really valuable piece of advice — always trying to keep our medical information current. Sure, Aidan has gastroparesis, but if that's not the issue right now, she's going to want her one-sheet to reflect what the current issues are and why she's going back to see that doctor.
[28:47] And what you mentioned about Aidan's story with gastroparesis — it's a great point, because if her doctor doesn't see a lot of people with gastroparesis, as you said, the point of view they're coming from, what they're used to, what they're working with, is going to influence what they're looking at. For the population we work with — artistic athletes — you have a very slender dancer going in to see a doctor saying, "I've lost all this weight," and the doctor thinks, "Eating disorder, feeding tube." That may just be what he sees more of, and that may be where his first thought went. That's just the story he's used to working with. So it was great that she was able to come in, highlight those articles, and say, "Here, this is what I want you to look at and talk about."
[29:42] Aidan talked a little bit about how she's been going through this since she was a teenager, since she was a minor. From your point of view, Dr. Bluestein, is there advice that you would give teen patients specifically?

[29:55] Dr. Linda Bluestein: I really think it's important for teen patients to start learning how to advocate for themselves, especially when their parent is still involved in their healthcare. It's important to really start to learn how to speak on your own behalf. I really like it when I hear from both the teen patient and the parent. If I hear everything from the parent and the teen never says a word, it's— it's really nice to be able to hear from both of them. I do want to hear from the parents too, definitely, but I want to hear from the teen as well.
[30:33] Especially as they're getting to be 19, 20 — I do have some patients like that where the parent is still really directing the care. I understand that in some cases, if the symptoms are bad enough and the person is really struggling, maybe the parent does still need to be in charge of the care. There are challenges there that sometimes cannot be rectified differently. But whenever possible, I think it's important to learn to speak up for yourself and be really actively involved, even when you're a minor.

[31:07] Aidan Leslie: Aidan, does that resonate with you?
[31:11] Absolutely. When you're younger, it's very important to start speaking up, and it's terrifying — especially as someone who was very shy and introverted growing up. But it gets easier. Once you start doing it and you start seeing the benefit of actually connecting with the doctor instead of just letting your parents do it for you, it starts to get even easier. So definitely start.
[31:35] Also, like I was saying before — I talked it over with my mom before every appointment, and that was really nice. Sometimes it's not intentional; I just genuinely forget to bring something up, and my mom would say, "Oh hey, you wanted to talk about this," and she would jump in. Or she might chime in about things that I hadn't really noticed but she had noticed from an outside perspective watching me. So I think it's very important for both parent and patient to have a voice and to use it as much as they can.

[32:03] Jennifer Milner: Absolutely. So Dr. Bluestein, we've talked about both sides being prepared, both sides walking into the room ready to work together — all in these ideal scenarios, right? But if people do feel unseen or unheard by their doctor, what do you suggest they do?

[32:26] Dr. Linda Bluestein: I think if you can really think about what, if you could get just one thing out of the appointment, what would it be? And if you feel like you're really just having difficulty connecting with the doctor, try to connect with them on a human level. I've been in appointments with family members where I literally could feel and see the switch happen — the doctor came rushing in, you could almost feel the frustration, they were sitting at the computer going through everything, and then something happened where the switch flipped and they started to see my family member as a person. They started to really get that this is somebody who is struggling and who just wants and needs their help.
[33:29] Working on building that connection in whatever way you can — sometimes it takes, for example, asking the doctor a question like, "Have you ever had the flu?" And if they say yes, say, "Think about how you felt on that worst day of the flu. Before I became chronically ill, I had the flu, and it feels to me like I have the flu every single day. I know that this may sound hard to believe because of X, Y, and Z, but this is how I feel. I am willing to do the work. I understand that you may not be able to cure or fix my problem, but I at least need to feel like you heard what I said and that I was taken seriously — and that if there are any possible ways we can evaluate this further, that we are taking those steps."

[34:27] Aidan Leslie: I'd love to tackle that a little bit from the patient side, because I've definitely been in appointments where you see that switch. You can tell partway through the appointment whether you're kind of on shaky ground or if it's going really great. I've been in both types of appointments — where you're on shaky ground and you fight for it and you make that connection and it turns around — but I've also been in those appointments where you fight for it and it just does not go well.
[34:59] I think it's so important to have almost like a filter in your mind. If you're in one of those appointments that you know is just not working, sometimes you get a doctor and it just doesn't click. I think it's very important to have a filter and to step back from the chaos that is doctor's appointments in general and look at it objectively. Ask yourself: does this apply to me? Does this work for me? Does this benefit me?
[35:30] Make sure you're looking at it objectively, because sometimes you may not really connect with the doctor, but they're saying something that will benefit you even if you don't want to hear it. I've been in that situation — I've been told I need to exercise for one hour every day, that I need to schedule my day really strictly, that I need to make sure I'm doing this and not doing that. I remember being overwhelmed just thinking about it. But I talked it over with my mom and I stepped back and thought, in reality, it's not that much work. Just sit down, figure it out, and try it for a little while. And I did. And it ended up really helping.
[36:11] At the same time, I've also had doctor's appointments where they say something and I look at it through that filter and I think, yeah, no, this doesn't work for me. Some things are like, "Oh, you will never do X, Y, and Z again." And you look at it and you think, objectively, no — that's not me. And you just let that go. But there are still sometimes parts of appointments where you think, "Okay, I'm going to keep this part and let that go." So I think that filter is really an important part of working with doctors, whether the appointment is good or bad.

[36:40] Dr. Linda Bluestein: I like what you're saying, Aidan, because at the end of the day, it's your body. The mistake that a lot of us make — and I've made this mistake — is that if the doctor doesn't validate what we're feeling, then we start doubting ourselves. Rather than saying, "They're not appreciating what I'm saying, they may or may not believe me" — we start to not even believe ourselves. And it's much more harmful to stop believing yourself than to say, "Well, this doctor didn't believe me," and then decide whether or not to return to this person for care or try to find someone who does believe you. At the end of the day, it's much more important to believe in yourself.

[36:44] Aidan Leslie: Those are really wise words. I'm glad you said that. It's such a fine line of, "I respect this doctor and I chose them because I have read great things about them, and I want to go in and get their information" — as Aidan said, whether I want to hear it or not, it might be something I need to hear. But being able to have that filter that helps you say, "Wait a minute, this is making me doubt myself," or, "No, this person is saying I should stop walking because walking tires me out, so I should just use a wheelchair the rest of my life." Nope, that doesn't fit either.
[38:15] Really knowing yourself and having that objectivity — being able to step back — is so important, because when we start doubting ourselves, especially with chronic illness — when you go to the ER and say, "My headache is a nine," and they say, "No, it's not, because if it was a nine you wouldn't be able to talk," and you're thinking, "I'm pretty sure it's a nine" — not having that self-doubt is so important for all of this.
So Aidan, if there is one thing that you want people to take away from this conversation, what would that be? I know it's asking you to distill a lot.

[38:53] Aidan Leslie: Oh, so much and just so little. It's such an important topic. I would probably say — and I'm going to make it two — respect is so important. Respect the doctor, but also respect yourself, and respect your right to try to feel better. And also use that filter to make sure that you're not just throwing things out or taking things that don't apply to you, but really using that filter and building it up over time so you're confident in it. Respecting yourself and respecting your doctor.

Jennifer Milner: Nice. And Dr. Bluestein, I would ask you the same question.

[39:31] Dr. Linda Bluestein: And I'm going to take Aidan's halves and maybe divide them into thirds.

[39:41] Aidan Leslie: Come on, guys. Come on.

[39:46] Dr. Linda Bluestein: The first thing is: don't take it personally. Oftentimes we — and I know I do this — we start with the self-doubt: "Oh, this person doesn't like me or believe me." It's probably more a reflection of what's going on with them. That physician may have a sick child at home that day. They may be having difficulties with their employer or with insurance companies and all the crazy regulations that they have no control over. So just because things didn't go well doesn't mean that you did anything wrong.
[40:25] And in the same vein, there are so many things that you can do to help try to make the experience more positive and more beneficial for you. I have been working on a course for this, so if anyone is interested, if they go to my website there'll be more information about that.
[40:44] Because this is a skill that I don't think we needed back when Marcus Welby — Aidan's probably too young to know who Marcus Welby is — but when Marcus Welby would come to your house with just a stethoscope, a blood pressure cuff, and some very astute skills. Nowadays the healthcare system is so complex, and I think because our testing has become so much more advanced, we rely on it too heavily. When the testing comes back negative, we often don't believe the patient — and that is absolutely not how it should be, because the testing should just be one small piece of the puzzle.
[41:25] So at the end of the day: don't take it personally. Know that this is something you can definitely work on as a way of improving your access to care. And as a person who's chronically ill, it's even harder, because healthcare is difficult for anyone to navigate, but especially if you're chronically ill.

[41:43] Aidan Leslie: Yes, I totally agree with you. And I think this has been such an important conversation for us to have. I feel like there is a cornucopia of information that has come out of this conversation. We are so lucky to have Aidan Leslie bringing her point of view to this and sharing her journey, and also to have Dr. Bluestein, who is able to address it from the other side of the table. We've been able to have a really great conversation from both sides — when both sides really want this to work, and both sides are really trying to bring everything to the table, and both sides are trying to make it work.
[42:23] It's been really valuable to hear both of you talk about what happens when the person on the other side of the table isn't necessarily all that you had hoped they would be, and the things that you can do from your point of view to try to move it forward. So Aidan, thank you so much for taking the time to come on and chat with us today and to share your experiences with us, and Dr. Bluestein for being able to chime in with your experiences as well. We are so grateful that you both have been able to give us so much to think about and some really actionable steps to take into our next appointments.

[42:58] Aidan Leslie: Thank you so much for having me.

[43:00] Dr. Linda Bluestein: Yes, thank you.

[43:00] Jennifer Milner: Thank you for being here. Thank you for always being willing to speak up in Bendy Bodies. You're such a great ambassador and a great example of how to live really incredibly well with a chronic illness, and we love having you part of the Bendy Bodies team.

[43:16] Dr. Linda Bluestein: Yes, absolutely.

[43:19] Jennifer Milner: So until then, this is Jennifer Milner, and for Dr. Linda Bluestein and myself, thank you very much for listening to Bendy Bodies, and we will see you next time.

[43:25] Dr. Linda Bluestein: Thank you for joining us for this episode of Bendy Bodies with the Hypermobility MD, where we explore the intersection of health and hypermobility for dancers and other aesthetic athletes. If you found this information valuable, please share it with a colleague or friend and leave us a review on your favorite podcast player. Remember to subscribe so you won't miss future episodes.
[43:50] If you want to follow us on Instagram, it's @bendy_bodies, and our website is www.bendybodies.org. If you want to follow Bendy Bodies founder and co-host Dr. Bluestein on Instagram, it's @hypermobilitymd, all one word, and her website is www.hypermobilitymd.com. If you want to follow co-host Jennifer Milner on Instagram, it's @jennifer.milner, M-I-L-N-E-R, and her website is www.jennifer-milner.com.
[44:28] Thank you for helping us spread the word about hypermobility and associated conditions. We want to hear from you. Please email us at [email protected] to share feedback.
[44:38] The thoughts and opinions expressed on this podcast are solely those of the co-hosts and their guests. They do not necessarily represent the views and opinions of any organization. The thoughts and opinions do not constitute medical advice and should not be used in any legal capacity whatsoever. This information is not intended to diagnose, treat, cure, or prevent any disease, as this information 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.
[45:06] We'll catch you next time on the Bendy Bodies Podcast.