Bethany's Story: En Pointe & in Pain

Summary

Summary of "Bethany's Story: En Pointe & in Pain"

The Medical Detectives episode titled "Bethany's Story: En Pointe & in Pain," released on March 26, 2025, delves deep into the harrowing journey of Bethany, a former professional ballet dancer, as she navigates a labyrinth of unexplained medical symptoms, persistent pain, and systemic misdiagnosis. Hosted by orthopedic surgeon Dr. Erin Nance and content creator Anna O’Brien, this episode not only recounts Bethany's personal struggles but also sheds light on broader issues within the healthcare system, especially concerning women's health.

---

1. Introduction to Bethany's World

The episode opens with Dr. Erin Nance and Anna O’Brien expressing their excitement about sharing Bethany's profound and multifaceted story. Erin humorously remarks, "It's got ballerinas and dinosaurs and babies. Really?" (00:21), highlighting the complex interplay of Bethany's life as a dancer, mother, and someone battling mysterious medical ailments.

---

2. Bethany’s Dance Career and Early Life

Bethany introduces herself as a former professional dancer who primarily focused on ballet during her college years (01:12). She describes the rigorous demands of her profession, stating, "In my peak, probably 8 to 9 [hours]... it's very similar to what you would normally do. Like a full-time job" (01:36). Despite the intensity, she maintained that her injuries were minor, typically ankle rolls and muscle soreness, without any career-ending incidents.

---

3. The Onset of Pain and Initial Symptoms

In her early 20s, while balancing intensive ballet training with teaching dance classes to support herself financially, Bethany began experiencing persistent lower back stiffness and popping sensations during exercises like bicycle crunches (03:05). Initially dismissed by her professors as normal for ballet dancers, she tried adjusting her routines but soon encountered more severe symptoms, including sharp heel pain and fluctuating big toe discomfort (04:00).

---

4. The Long Road to Misdiagnosis

Bethany's pain was insidious, gradually worsening over time. She recounts, "Nothing in my head. I thought, this is unusual. This doesn't feel normal to me" (05:45). Despite her severe discomfort, societal and professional pressures in the dance community discouraged her from seeking help. The stigma around admitting pain in a field that demands perfection led her to endure prolonged suffering without proper medical intervention.

Repeated visits to various orthopedists yielded minimal results. Time and again, doctors attributed her pain to overuse, dismissing the need for further imaging tests like X-rays or MRIs. Bethany reflects, "They just said, well, that's life. You know, you're using your hips a lot. It's ballet class" (08:13). Her frustration grew as treatments like physical therapy and medications failed to alleviate her symptoms, pushing her deeper into despair.

---

5. Impact on Personal and Professional Life

The relentless pain took a toll on Bethany's professional aspirations and personal life. She describes the agony of attending auditions and classes, knowing she couldn't perform at her best. "Seeing people go to class or go to auditions and just look like dance was still effortless to them was really difficult" (18:02). The inability to perform as expected led to diminished self-worth and deepened depression, exacerbating her physical pain.

Bethany also shares the challenges of balancing her health with her responsibilities as a mother. Pregnancy introduced new complications, including severe lower back pain and the onset of restless leg syndrome, which compounded her existing ailments. "My lower back pain was so bad... she tried to kill me in the process of getting here" (30:13).

---

6. The Breakthrough Diagnosis

After years of misdiagnosis and enduring immense pain, Bethany's turning point came when she stumbled upon a Facebook post by her aunt discussing similar symptoms. This led her to research and recognize the symptoms of a rare autoimmune disorder known as ankylosing spondylitis (AS) (41:15). Determined to find answers, she confronted her primary care physician, demanding a referral to a rheumatologist despite initial resistance.

Upon consultation, a young and thorough rheumatologist conducted comprehensive tests, culminating in the definitive diagnosis: ankylosing spondylitis. Bethany explains, "It is an autoimmune disorder... it's named after an ankylosaur" (49:30). This revelation was bittersweet—while she finally had a name for her suffering, it meant accepting a progressive and debilitating condition that would require lifelong management.

---

7. Reflections on Gender Bias in Healthcare

Bethany poignantly discusses the gender biases that contributed to her prolonged suffering. She highlights how AS was historically viewed as a male-dominated disease, leading to skepticism when diagnosed in women. "They said ankylosing spondylitis is a men's disease... that is absolutely not the truth" (56:27). This misconception delayed her diagnosis for two decades, underscoring the systemic issues in recognizing and treating women's health concerns.

Dr. Erin Nance and Anna O’Brien further elaborate on how many women with AS remain undiagnosed due to subtle and diffuse symptom presentations compared to men, who often present with more overt spinal fusion symptoms. This disparity in symptom expression leads to underdiagnosis and inadequate treatment for women.

---

8. The Aftermath and Moving Forward

Receiving a diagnosis was a double-edged sword for Bethany. On one hand, it validated her years of suffering and provided a framework for treatment. On the other, it brought the reality of her chronic condition to the forefront. She expresses a mixture of relief and anger, "I could have known this 20 years ago... there's a lot of anger there" (56:32).

Bethany emphasizes the importance of awareness and advocacy, both for herself and her children, who may inherit the condition. She underscores how crucial early diagnosis and proper treatment are in managing AS and preventing further complications.

---

9. Concluding Insights and Call to Action

The episode concludes with a powerful message about the necessity for more inclusive medical research and better diagnostic practices that consider gender differences. Dr. Nance discusses the historical exclusion of women from clinical trials and the resultant gaps in understanding diseases like AS in female populations.

Bethany advocates for increased awareness and education among both healthcare professionals and the public to prevent others from enduring the same frustration and pain she experienced. "Sometimes an answer is better than nothing" (68:46), she asserts, highlighting the life-changing impact of finally understanding one's health struggles.

Dr. Erin Nance and Anna O’Brien echo the need for continued advocacy and the critical role women play in driving forward medical research and patient care improvements.

---

Notable Quotes:

• Bethany (00:33): "Everything you could want on a Wednesday."
• Bethany (03:05): "I describe it kind of like insidious. Like it just kind of sneaks up. And then all of a sudden you're like, oh, this is awful."
• Bethany (08:13): "If I go to the doctor, what are they going to tell me that's wrong?"
• Bethany (17:54): "I have been told that this has been all in my head probably 15 times."
• Bethany (49:53): "Even if I'm in this amount of pain forever for the rest of my life... having something to call it is so much better than not knowing and thinking you're crazy."
• Dr. Erin Nance (56:46): "If someone has morning stiffness and this pain, you get a pass to rheumatology."

---

Conclusion

Bethany's story is a poignant illustration of the challenges faced by women in the medical system, especially those battling rare and misunderstood conditions. Through persistent advocacy and resilience, she not only found her diagnosis but also serves as a beacon for others experiencing similar struggles. The Medical Detectives effectively underscores the critical need for gender-sensitive medical research and the empowerment of patients in their healthcare journeys.

Transcript

[Bethany]

Foreign.

[Erin]

How are you?

[Nance]

Hey. I'm good. I am so excited because we just had like a black swan moment on our podcast. Yeah.

[Erin]

I would also say this episode really does have everything. It's got ballerinas and dinosaurs and babies. Really?

[Nance]

And medical mysteries.

[Erin]

And medical mysteries.

[Nance]

Everything you could want on a Wednesday.

[Erin]

Yeah. You know, Wednesday just got a whole lot more interesting. So with that, let's just get into the episode already.

[Nance]

Let's do it. Hey, Bethany. Welcome to the Medical Detectives.

[Erin]

Hi, Bethany. I'm excited. I literally have no clue what's going on, as usual. So I'm excited to hear your story.

[Bethany]

Yeah, I'm excited to. To be able to tell it.

[Nance]

Well. I always like to start the episode off by asking what your life was like before all the drama.

[Bethany]

Yeah. So I am a former professional dancer, now retired. We.

[Erin]

What type of dance?

[Bethany]

All of it. I focused mainly on ballet in college.

[Erin]

Wow.

[Bethany]

So. So pretty hardcore. Yeah.

[Erin]

No, ballet is like, not for the faint of heart.

[Bethany]

Like. No, not at all.

[Nance]

How many hours a day were you dancing?

[Bethany]

In my peak, probably 8 to 9. It's very similar to like what you would normally do. Like a full time job. Right. Like, you're putting in the same amount.

[Erin]

Of hours that your full time job is exhausting.

[Bethany]

Very much. But you train, you know, you're used to it, your body is used to it, your brain is used to it. So to me, it was normal. That was just my whole life.

[Nance]

Now, did you have any significant injuries along the way?

[Bethany]

No, none other than here and there. I would roll an ankle and would, you know, have it wrapped. Sometimes I would dance on it when advised not to. I was a really good patient. So other than that, I would say normal dancer injuries. You know, sometimes you're sore, sometimes your muscles hurt more than other days, but nothing significant. I never fell, I never tore an acl. I never, you know, nothing. Career ending, basically.

[Nance]

And this was to be your profession, your full time job?

[Bethany]

Correct. That was supposed to be my full time job, yes.

[Nance]

So what happened?

[Erin]

I'm guessing it was not your full time job.

[Bethany]

I do still work in dance, but I am not performing and I did not dance professionally for a very long time. Okay, so it ended rather early.

[Erin]

The story begins.

[Bethany]

It does. It does. It is a mystery. It is a mystery.

[Nance]

So what was the first sign that something was not right?

[Bethany]

So the first things I started noticing, I would say I was in my early 20s, so I was still in college. We were in ballet class Monday through Friday for four hours every morning. And then we'd go to English, or we'd go to math, or we'd go do our speech classes in our buns and our leotards. And I was, you know, doing modern classes or jazz classes also. We were dancing a lot. And I started to notice that I was having a lot of issues with my lower back and some stiffness. That was the first thing that I started to notice. Nothing that would, I don't think, would be considered unusual for someone who is as active as I was at that time. You're just. You're doing a lot. And it was an intensive program. You know, ballet is hard, and sometimes maybe you tweak something and you're sore for a few weeks. So I would put ice on it or use Ben Gay Bio free. So using a lot of that, I remember asking one of my professors, we were doing an ab workout on the floor. We were doing bicycle crunches, right? And you're flat on your back, and your feet are just parallel to the floor. You know, the goal is to not let them touch, touch. So you're getting that. Those lower abs, which is also where your lower back when your hips are. And I felt really strange. Not painful, but strange. Like popping sensations when I would extend each leg. Almost like something wasn't quite aligned correctly. I remember mentioning it to a professor, and they just said, well, that's life. You know, you're using your hips a lot. It's ballet class. Things are going to be weird. So I kind of wrote it off. And then I remember thinking, okay, maybe I don't. Maybe I don't do bicycle crunches anymore, and I'll adjust and I'll do something else, because that's weird. And then I started noticing I was getting really painful arches and really sharp, stabbing pain in my heels. And it would change from foot to foot depending on the day. And then I started getting extreme pain in both of my big toes. And it would also change from foot to foot. There were days where I would wake up and think, I think I broke my toe. And then the next day, it wouldn't hurt at all. So it was. It was weird. And it almost felt like I was chasing the pain throughout my lower body. And I could never pinpoint it, but what was happening is nothing was improving. It was just very slowly getting worse. It was. I describe it kind of like insidious. Like it just kind of sneaks up. And then all of a sudden you're like, oh, this is awful.

[Erin]

That.

[Nance]

That is. That is one of the categories when we talk about pain. Was it acute Was it sudden? Was it gradual and insidious? So yes.

[Bethany]

Yeah, yeah.

[Erin]

It was just like vocabulary word of the day.

[Bethany]

Insidious. Yeah, that's what it was. So it remained a mystery. And I had clocked it in my head. I thought, this is unusual. This doesn't feel normal to me. But also, I was dancing a lot, a whole lot. And I was also teaching dance at night to supplement income in college.

[Erin]

Oh, take a break.

[Bethany]

You don't do that when all you can afford is ramen noodles. You know, you're just like, you're in college and you're like, I have to have toilet paper.

[Erin]

You're also 20 and feel like you're invincible. Right?

[Bethany]

And I did. I did. I think we all do at that age, you know, like, nothing can get me. Ha ha ha.

[Nance]

Now, I have a question, because I see a lot of professional athletes, and for them it's kind of, I feel like almost a sign of weakness to admit that they have a problem and something hurts and they don't want anyone else to know about it. They don't want anyone to know that they have some type of injury. Was that kind of sentiment how you would describe your environment?

[Bethany]

100%. We're supposed to be superheroes on stage. We do the things that little girls dream that they can do. We're up there doing it, and we're not supposed to show any type of pain. Right. So I would say I probably sat on this for a couple years. We're dancers, we're little assholes. Like, we just. We refuse to admit defeat. And we train. Our entire childhoods, our entire lives are spent training for maybe six, eight years of performing ability before we have to retire.

[Erin]

Yeah, I mean, the plotline of every major dance movie is, girl gets injured, Will she take the cortisone shot to go on stage?

[Bethany]

Right.

[Erin]

And will she ruin the rest of her career when she does it?

[Bethany]

And they're written that way for a reason, because that's based in real life. You never know when you're gonna get a career ending injury and you feel like you wasted your entire life and you don't have anything to show for it. So I sat on it for a while. A lot of it was fear of, you know, if I go to the doctor, what are they going to tell me that's wrong? Like, what if something really, really bad is wrong and maybe if I ignore it, it'll go away? You know, early 20s, you're a little stupid. So I finally. It got to a point where I didn't Feel like I was getting any better. You know, I was stretching. And I know how to stretch. That's. That was quite literally my job. I know how to rehab things. You know, you got a PT all the time when you're an athlete. And it wasn't getting better. Stretches weren't helping it. I was taking a lot of Advil. Advil didn't even touch it. Not even close. So I finally went to an orthopedist and basically was told, it's just overuse. Clearly. Clearly this is an overuse situation. You're doing too much. It's not going to get any better until you stop dancing. And that was my first experience. There were no X rays offered. There were no MRIs offered. Just. Well, you probably should just stretch. Like, I do that all day, every day.

[Erin]

Of course you stretched.

[Bethany]

So that was my first inkling of this might be a little bit of an uphill battle if this continues, which it did.

[Erin]

So I want to pause for two seconds just because when you were telling us about dancers and their careers, I.

[Bethany]

Could kind of hear in your voice.

[Erin]

A little bit, and I just want to hear it from you directly. What was going through your head at this point?

[Bethany]

I mean, I honestly thought that this was this dream that I've had that I've worked so incredibly hard for my entire life, might not happen because something is wrong or I'm somehow not handling it as well as everybody else does. Right. Like Susie Q next to me at the ballet bar seems to be fine. And she doesn't complain about being in pain and she seems okay. And maybe I'm just a baby, you know, maybe I just can't handle it. Maybe I can't do it. And that was always that little voice in the back of your head that talks to you when you don't want it to.

[Erin]

It's very loud when you don't want to hear it.

[Bethany]

Yeah, 100%.

[Erin]

Yeah, I know that voice.

[Bethany]

Yeah. Yeah.

[Nance]

So you worked up the courage to see a specialist, and now the specialist is telling you, suck it up. Where do you go from there?

[Bethany]

I go back to class. I graduate. So I just keep chugging along as best as I can, you know. Meanwhile, nothing pain wise is getting any better. And then I'm starting to notice other really weird symptoms. My face would start to swell, which was really weird. And I would get red all throughout here. Really, really red. Almost like you're having, like a menopausal hot flash. But I was, you know, at that point, 24. And then the back pain at that point had gotten so bad that if I had to drive, for instance, if I had to drive any direction, I think my commute to my job at that point was like 45 minutes from home to work. And I would get to about the 30 minute mark and I would be so stiff and in so much pain that I had a hard time getting out of my car and straightening my back. I had a hard time getting out of bed in the morning and I had a hard time sleeping because it was so bad. And I started to notice that it wasn't like an injury pain. It was at weird times of the day and it seemed to be worse when I rested and better when I moved. And I have a guess.

[Erin]

I'm not gonna say what I think it is, but I think it's autoimmune because I know that when I wake up I feel terrible. And the one thing that makes me feel better is getting up and just walking around my apartment. Even if it's terrible. Like sometimes my knees will kind of lock and my ankles will kind of just fight me.

[Bethany]

Mm, I'm right.

[Erin]

You're.

[Bethany]

It is not close.

[Erin]

You're close.

[Bethany]

You are. Well, you have one part of it.

[Nance]

I'm going to tell you. You're. You're never going to guess it. You're never going to guess it's multi faceted.

[Bethany]

You probably have never heard of it.

[Nance]

Never heard of it. And you're never going to get.

[Erin]

I love a good surprise.

[Bethany]

So where we are now is I've graduated, I'm working, I'm auditioning for anything and everything. You know, we call them cattle calls in our industry where you just show up with about 600 other dancers who look exactly like you do and you hope you make the audition. So I'm working as much as I can. I've moved out of my parents house, I have, you know, my own big girl health insurance. And I, at this point, I think I had gone back to a different orthopedist probably four or five times. And almost every single orthopedist visit had the same trajectory to it. I'd make the appointment, I'd feel like, okay, maybe, maybe I found the right doctor that's going to tell me what's wrong or not even really what's wrong, how I can fix the pain level that I was in. So, you know, you'd make your appointment, you kind of get excited about your appointment. You go in, you do all your paperwork. Usually they would do X rays and usually they would look at my history or they would talk to me and go, oh, well, you're a dancer and this is just going to be how it is. You're just sore or you've tweaked your back and you're just going to keep dancing. So there's nothing we can do because we know how dancers are. You're not going to stop, so it's just overuse. Or a couple times maybe they would dig a little deeper. And then it turned into, oh, well, it's just all in your head. Like, that was.

[Erin]

I was waiting for the crazy to come off because it's always that you're crazy.

[Bethany]

Sorry.

[Erin]

I was just waiting. I was waiting. I was sitting here going, she's gonna say it.

[Bethany]

She's gonna say, I have been told that this has been all in my head probably 15 times. And then you start to believe it. Oh, 100%. You're like, okay, well, I am crazy. I even went to a psychiatrist to think maybe if I get on some antidepressants or anti anxiety medication that this will leave my head. I. I don't know. And I think about the third or fourth time I went, I mentioned. Which may have been my downfall, I mentioned that it comes and goes like, it's every day is not terrible. And then they're like, oh, well, it's clearly because you're a woman and it's probably around your period and it's your lower back. So maybe it's endometriosis. Maybe you just have really bad periods. I think it was honestly just to try to get me to shut up, to be perfectly honest, because no one ever sent me to a gynecologist referral. No one ever said, hey, maybe you need to get an ultrasound to see if this is what's going on. It really. It really just felt like they're trying to get me out the door. They're trying really, really hard to just be like, she's fine and she needs to chill out. Please go away so we can see the next patient. I went on birth control. That didn't help. Nothing helped. Nothing helped at all. So it was being reinforced to me over and over and over again that either this truly was all in my head or I had some terrible reproductive disease that no one could find. Or I just wasn't handling life right. Like, clearly I'm not cut out to dance professionally or to make this my job. So I. I guess this is what's life. This is what it's telling me, right? Like, I'm just not tough enough. I'm not strong enough. And I guess I am crazy, you know, because you just. You really start to internalize it because you. You think, well, I'm going to doctor. Like they were in school half of their lives. Obviously, if they don't know what's wrong, or if they're telling me that it's in my head or they're telling me that there's nothing wrong with me, then I guess there's nothing wrong with me. So you believe them because that's kind of what's ingrained in you to do. And, you know, not knocking doctors as a whole, but I do feel like there's a huge bias when it comes to young women when they go to a doctor or women in general, but specifically someone who should be healthy.

[Nance]

And. And each time that you came, you know, if someone came up with a new theory, like, oh, it could be endometriosis, and they started you on. On the birth control and then dead end. How did that feel? Each time there was a new possibility, and then it's a dead end.

[Bethany]

Yep. Oh, it sucked. Because you would think, okay, if I. If I start this medication, maybe I'll feel better. And then it doesn't work. And then you go back and they're like, well, try. Let's try another six weeks. Then you go back and it hasn't worked. And then at that point, you're just mad. I just remember being so mad. And I am not a mad person. I'm a very positive, happy, go, lucky, human by nature. And I just remember being so irritated all the time. And what used to bring me so much joy, like going into ballet class and just turning off my brain and focusing on class and what I've trained my body to do. All of a sudden, I couldn't do anymore. My flexibility was leaving, and the pain levels were just increasing and increasing and increasing and increasing. And I just kept getting told, it's.

[Nance]

In your head you've gone through now. Orthopedists, obgyns, psychiatrists with chiropractors did that too. Add that to the list.

[Bethany]

That freaked me out. Not. I think I went twice. And I was like, I don't like this at all. Did dry needling back when that was really trendy.

[Erin]

Is that the acupuncture or is that kind of.

[Bethany]

I think it's. I think it's acupuncture needles, but they go deeper into your skin. I think the thought process is to, like, oh, yeah, to put in the muscle so that the muscle spasms and releases.

[Erin]

No, it was terrible.

[Bethany]

It was the worst thing.

[Erin]

But that's how you know you were in a lot of pain.

[Bethany]

Yeah, I was willing at that point. I had tried every possible thing that I could think to try.

[Nance]

You're doing Western medicine, Eastern medicine. You would take any medicine.

[Bethany]

I'm letting people stab me.

[Erin]

Instagram medicine.

[Bethany]

Right. I mean, I'm laying on a table letting people shove needles into my back. So at that point, I was feeling really hopeless. And, I mean, I was auditioning a lot. You know, you just go to as many auditions as you possibly can because the goal is to just get as many people to see you as humanly possible. So, you know, some mornings were decent. I was okay. And then some mornings I would wake up and not be able to stand completely, not feel like I could walk from my bed to the shower and think, there's absolutely no way on earth that I am going to be able to dance today. I can't walk. Much less am I going to be able to take a full ballet barrel. And then with these auditions, you have to do your hair, you put on a full face of stage makeup, you're walking in with red lipstick on. And it was hard. I mean, there were a couple auditions that I did not go to when it was just so bad that I didn't want to make a name for myself the wrong way. And I felt like if I went to that audition on those days, that I was not going to be putting my best foot forward. And I didn't want to get a reputation as someone who had to quit in the middle of something or my leg wasn't as high as it normally should be because I just couldn't do it. And seeing people go to class or go to auditions and just look like dance was still effortless to them was really difficult. It just kind of kept cementing that idea in my head that I wasn't as good as they were at that point. I had been told so many different times that your pain is normal for what you do or have been doing and have been training for your whole life. So you look around and you think, I'm. I'm just not good enough, I guess, and obviously they're going to get the job over me. There was a lot of time spent very depressed about thinking that I had wasted a lot of time in my life preparing for something that was becoming more and more clear it wasn't going to happen. It had been, I would say, probably about a year where it had been a thought in the back of my mind that maybe I need to stop doing this part of it was because I really felt like I needed to figure out what was wrong and I needed to throw a lot of my time and effort and energy into figuring that out, or my time and effort and energy into doing something else so that I wasn't in pain anymore. Because I thought, okay, well, maybe if I do stop dancing, I'll feel better. I won't be in pain. The chronic pain is. I mean, it's a mind fuck, for lack of a better term. It takes a lot out of you every single day just to talk yourself into doing the simplest things. And if you don't suffer with chronic pain, it doesn't make sense to a lot of people, right? Like, there are a lot of people walking around that don't have to take Advil all day long, that don't have to think about, okay, if I, if I do the dishes and make the bed this morning, that means two hours from now, I'm probably not going to be able to do my best job at work because I've spent so much energy doing those other things. And to have to constantly play that game in your head of am I going to make it to 9:30 at this audition or this class if I unload my dishwasher today? So a lot of that was in my mind for about a year and then just how terrible I felt in the mornings after a day that I may have gone to class. I ran errands, you know, go to the grocery store. I maybe had an audition that afternoon or I worked that evening and then the next day I would wake up and it would take me two hours to stand up straight. So I just thought, what if I book a job, right? Like, what if I get. I go to an audition and I get cast and then every single day I have to be in a show. Some of these shows run eight shows a week. You're doing two shows in one day. I don't think I can do that right now. And having to come to that realization was probably that one of the hardest decisions I've ever made and took a lot of time for me to come to the realization that I had to put my health first. And as much as I obviously love to dance, that what I was doing at the moment wasn't sustainable. And I wasn't going to be able to continue doing that for much longer. And I certainly wasn't going to be able to have someone pay me to do that and not know if I was going to be able to show up to my job the next morning. It was, God, it Sucked. It was the worst decision I have ever made. But there was, when I, when I finally said, you know, I'm done, I'm done, there was a little bit of relief because you think, okay, give it a month. I'm not going to go to class, I'm going to stretch, I'm going to rest, I'm going to relax and it's going to be better and then I'll find something else and I'll be okay. And you know, obviously that didn't happen, so.

[Nance]

So, you know, I can see that for any athlete because, you know, as I said, when I am treating athletes, when they have a career ending injury, it's devastating. But there's a finality to it because, okay, I broke my ankle. My ankle is never going to be the same. I'm never going to be able to get up on point like I've got it. In your case, there was no reason.

[Bethany]

No, no, not at all.

[Nance]

Which, which must have made it that much harder to accept that the end.

[Bethany]

It was so hard. And I remember that last audition and class that I went to and waking up the next morning and almost feeling like I might, at that point I lived alone, I might not be able to get out of this bed without help and thinking, I'm going to have to call somebody to get me out of this bed. And that's when I thought, I can't do this anymore. I can't. Like I cannot. This is the end, you know, I have to pivot. I have to make a different decision. And it was one day, just that extreme clarity of that was it, you know, I didn't go into that class, I didn't go into that audition thinking, this is the last time that I'm going to dance professionally. I did come to that decision rather quickly with how I was feeling afterwards.

[Nance]

So at this point, you have lost your profession that you set out to do. You have been to numerous doctors, you've tried numerous treatments, all with nothing to show for it. What's your next step?

[Bethany]

So after essentially giving up the idea of performing, I stopped auditioning, I stopped thinking that I was going to be an actual professional dancer. I pivoted to teaching. Obviously. I needed to pay bills, I needed to work. And I discovered that I really enjoyed teaching and I was good at it and my students enjoyed my classes. My classes kept getting bigger and larger and fuller and it kind of filled that void a little bit. And pain wise, nothing ever went away. It did slightly improve because at that point I was in control in my own Classroom of how much I pushed myself during the day and I had adjusted to how I needed to structure my day to make it through. Basically I stopped going to doctors because I had given up at that point. And I just thought, well, I did so much damage that this is just going to be what I have to deal with. Because obviously I did something at some point and I. I'm just going to have to deal with it. There's nothing I'm going to be able to do. There's no medication I can take to fix it. So I'm just going have to be really careful and observant of how I'm feeling and how far I think I can push it that day so that the next day and the next day and the next day and the next day I can still go to work and do my job. So I open the studio, I get married, I get pregnant and I have some babies.

[Erin]

Okay.

[Bethany]

And new.

[Erin]

New life.

[Bethany]

New you, new me. New life. So I have three littles now.

[Nance]

We've had many guests on our show who have had mystery ailments that when they became pregnant, all got better. Was this your experience?

[Bethany]

No, no, no, no. Sorry.

[Erin]

I left because it was like your face just went, no. Wouldn't that be so unfair that everybody else has gotten better?

[Bethany]

My. My first pregnancy, I would say my pain level was about normal. I actually loved being pregnant. My first pregnancy, I had no morning sickness. I felt like this is the. This is what I was meant to do.

[Erin]

Were you one of those women that are like ethereal and glow and just like saunter through life with their child?

[Bethany]

Yes. Yeah. But my first one, a hundred percent. My second pregnancy was harder. I was in more pain and I was very, very sick for a very long time with him. And with my third, all hell broke loose. I like to say that she tried to kill me in the process of getting here. My body felt like it exploded. My lower back pain was so bad. Towards, I would say about six months pregnant to her delivery day. I was for sure, I was positive that I broke my back or she did. The weight of her broke my back.

[Erin]

This is making me think of. We had a woman who had a very similar osteoporosis experience that she had pregnancy induced osteoporosis.

[Bethany]

Maybe I did at the same time, I don't know. But no, that's not it. So I had gotten about six months in. She was a big baby. She was my biggest. She was larger and I carried her lower, so the pressure on my back was terrible. But a New really odd symptom that had never happened popped up. And I had restless leg syndrome.

[Erin]

Oh, that's the worst.

[Bethany]

It's the worst thing I've ever experienced on planet Earth.

[Erin]

So did you have it just in your leg or did you have it throughout your body?

[Bethany]

I had it in my arms and legs, which. The arms are weird.

[Erin]

It is super weird.

[Bethany]

I don't like. Like, I felt like I needed to leave my bed and run around my neighborhood. And then it started in my legs. And in my legs it kind of felt like, this is disgusting. But it felt like there were bugs, like ants or something kind of crawling on my skin, which is not the coolest thing to think. And there's nothing you can do. Like, I remember taking my fists and beating my legs to just try to alleviate any of the weird, creepy, crawly feeling. Or I would pinch other sections of my body to try to distract me from the feeling in my legs. My poor husband. I mean, I was just like, I am so sorry. I would just be, like, screaming in bed because you can't sleep. I mean, there's no way you can sleep.

[Erin]

No.

[Bethany]

And you're kind of limited on what you can take to help you sleep in pregnancy.

[Erin]

Magnesium is probably what they said.

[Bethany]

I even did the spray on my legs that I would, like, rub in. I'd rub it, like. And you can't do. Like, it was terrible. I mean, it was terrible. And of course, you know, I go to the OB and they're like, well, it's. You're pregnant. Being pregnant is hard. It sucks. Welcome. I'm like, yeah, it's hard. Two other times like this. I am not new to this. I have done this more than most people have.

[Erin]

Was this a man? What does he know about being pregnant?

[Bethany]

He was also in the military. He was like a military doctor. So this guy was like. He was like, you're fine. Suck it up. You're pregnant. I said some not so nice things to that man that day, but I don't regret it. But I was. I was not kind, but it had gotten terrible. At one point, they prescribed. I forget the concoction, but they said, okay, you're going to go home and you're going to take two Unisom 2 melatonin gummies, magnesium, B12 something. And then they gave me a prescription benzo that I could take that was safe for pregnancy and take it all at one time and hope that this horse tranquilizer knocked me out. And shockingly, it did not. I stayed awake through all of that medication. And meanwhile, my back is so bad that that's not helping anything at all. And, you know, I'm just being told, being pregnant is hard. Being pregnant is hard. Being pregnant is hard. You're old. You know, at that point I was 39, right? You're an old lady pregnancy too. Like, I was a geriatric pregnancy. So you're old and you're pregnant and you're a former dancer. Sorry, your life sucks. And I think I was awake for about 72 hours. At my worst, I had not slept at all. I went to the OB out of desperation. I was standing in the waiting room. I had signed in, and I passed out cold. At 8 months pregnant on the waiting room floor of the OB. Woke up, they were sending me to the ER for monitoring. Still at that point, didn't really take me seriously. They were just like, it's a really hard pregnancy, huh? Like, like, yeah, yeah, this really sucks. So I had my third. Her name is Lottie. She's the cutest little thing on planet Earth. So little Lottie came and I thought, oh, my God, I am not. I was looking so afford, like, to not being pregnant ever again. Like, everything's gonna get better, right? The restless legs are gonna go. I'm not gonna be in this excruciating pain. And lo and behold, it got worse. No, it got so bad that I was having to have my husband roll me over in bed because I could not move my spine enough to roll from one side to the other at all. Or I was having to grab the headboard behind me to rotate myself as hard as I could. And just, like, with my arms to even get out of bed. It would take me about two hours in the morning to stand up straight. And I would sit on heating pads. I would put ice on my back. And then, of course, you know, you have a newborn, so you're bending down constantly to change diapers, to lift her, to hold her. And then I have two toddlers.

[Erin]

How I love that at some point during the story, you thought you were weak. And from what you just told me, I can already know you're strong as hell. Because I would have phoned a friend, yeah, yeah, yeah. I would have been like, it's over. I obviously not cut out for this.

[Bethany]

Somebody help. Someone help me. I mean, I remember there were nights that I. And it always happened at about 3 ish am I would go to bed. You know, you're tired with a newborn, they keep you up all the night. And because I'd been up and moving all day I was okay decently. And I'd go to bed and I'd feel okay. I wasn't in a large amount of pain. And I'd wake up at about 2, 3, 4am sometimes and it would feel like while I was sleeping, someone had just taken a hammer to my lower back and in my hips and it was so bad, I, I can't even. There's not words to describe how bad the pain was. Like they give you that what's your pain scale? And you feel like sometimes when they ask you that saying 10 is dramatic. It was a 10.

[Erin]

Okay.

[Bethany]

And it was bad.

[Nance]

So when, you know, women are pregnant, there is a lot of hesitancy to do imaging studies and things because of, to the baby. But you had the baby and what was their reasoning for not doing anything.

[Bethany]

About it was hormones. Your hormones are changing because you just had a baby.

[Erin]

You're not crazy. It's just the harmonies right now.

[Bethany]

Your hormones are changing because you had a baby. So now they're going back to normal. So of course it's worse. Of course. Okay.

[Erin]

As a non person who's never been pregnant, general question. After you give birth to a child. Right. How should you feel? Should you feel better? Should you feel worse? Erin, give me just like a quick rundown.

[Nance]

It is normal to have aches and pains in that period, but it should be getting better and better, right? Not worse and worse. And especially when it comes to back pain, there's actually not that many things that it could be. And there are some very easy tests that we can do to, to help figure it out.

[Erin]

So that, that's Dr. Nance's way of saying they probably should have run some tests politely, Politely.

[Bethany]

Yes, they should have. There were several that I now know of that should have been done.

[Nance]

So things are getting worse. Did you go to anyone outside of your OB to discuss this?

[Bethany]

I went to my primary care. I essentially, kinda, kinda. I did feel like I wasn't rushed through those appointments versus at my ob. It was a very much, hey, how are you? Cool, everything's great. Baby's here.

[Nance]

Yay.

[Bethany]

She's cute. Bye.

[Erin]

Let me pop in, take a look at him out.

[Bethany]

Yeah. And I had just given up on them at that point. I was, nothing's going to happen here. Like they don't care. So I went to my primary care and they just said, well, it sounds like this has been a problem you've had for a really long time and maybe you just need to give yourself some time after this postpartum period to return Back to normal.

[Erin]

But your normal sucked.

[Bethany]

My normal sucked? Yes, 100% my normal sucked.

[Erin]

We don't want to go back to normal.

[Bethany]

And. But now my normal normal was worse than what it was before. And I'm having the old symptoms when I was younger come back up. All of a sudden I'm feeling it in my feet again. Now my Achilles are feeling like they're tearing. Now all of my toes are weird. Now all of a sudden it's in both of my hips and it's going down my thighs. And I noticed that I had sores and scabs on my scalp. So I just thought, wow, it's a lot of crazy hormones, I guess. And that's not normal, is it? No, no, no. So I carried on like that for about six months. My daughter was born in July and I finally, in end of December, beginning Of January of 2024, my husband basically said, something is wrong. Yeah, something is really wrong. And I don't know like what, what do we do? You know? At that point I said, well, I've seen every single possible doctor I could ever possibly see on this planet. I have probably been to every orthopedist in a 40 mile radius of this house. I have been to every physical therapist, I have been to chiropractors. I have been everywhere. And I happened to see a post on Facebook, of course, of course. By my lovely boomer of an aunt, God bless her, God bless in that moment because she, you know how they really like to overshare those boomers.

[Erin]

What did Brenda write? I've just given the name Brenda. That's feel like that's a great name, right Brenda?

[Bethany]

Yeah, Brenda would be great. Brenda was very much over sharing her recent diagnosis that she had. And I remember reading her paragraph on her Facebook update and thinking that's a really weird sounding thing. And I am someone that really likes to learn random things. I am what I like to affectionately call myself, a chronic Googler. I like knowledge. I like knowing random stuff because you never know when you're going to need it. So I remember seeing this huge long paragraph that she shared on Facebook and thinking that sounds crazy and like something I've never heard of in my life. So I Google it and now with Google AI, Google will pull up like you type in your question on Google and then it pulls up for medical stuff a list of symptoms. That's the first thing you see. And it's like AI generated on the top of your Google page. And I immediately look at these list of symptoms and it's Morning stiffness, low back pain, worse with rest, better with activity. Achilles pain, toe pain. Just this whole litany of symptoms that I just kept looking at and going, oh, my God, this is me. This, this. This is me. This is what I have. And my immediate thought was, there's absolutely no way this is what I have, because it's rare. The next thing I Google is the chances of you having this specific disease. And it was like, one in who even knows? Some crazy number. And I sat there thinking, it can't be this easy, right? There's no way I saw this today. And I go to Google it, and here it is. And so I sat on it for a while. I think I remember telling my husband that, hey, doesn't this sound like me? And I remember him saying, I mean, I don't know. Sure. And I sat on it and I said, I think I re Googled it. You know, in like, that obsessive moment. I re Googled it probably six to 10 times throughout the next couple months and thought, okay, I'm gonna read the symptoms again. And meanwhile, my. My pain in the mornings was getting worse and worse and worse. Now we know it was triggered by the hormone fluctuations after having my third baby. And I now know that I was in a massive flare, and it was getting to the point where I was maybe sleeping two or three hours a night. I was waking my husband up because I would literally yelp out loud when I had to roll over in bed, it hurt so bad, or I would have to wake him up so he could push me over like I was a log. And so finally I thought, okay, I know I'm not going to be able to just walk into a rheumatologist office and say, hi, my name is Bethany. Can you please. Can you please diagnose me? And so I made an appointment with my primary care. I saw the nurse practitioner, who is usually who I see, and I brought up the Facebook post. I pulled up Google for him, turned it around, showed him the symptoms, and he said, that's really rare.

[Erin]

Is it hereditary, too?

[Bethany]

It's genetic. There's a genetic component, yeah. And I had done all this research, and I looked at the man, and he said, you know, it really is more prevalent in males. And I said, I know, I know it's really rare, but I think that I have it. And he just kind of sat there and he was like, let me go talk to the doctor. So he leaves, he comes back, and he's like, so I talked to Dr. Whoever. He wants you to go to physical therapy. I'm like, I don't need physical therapy. I don't. I've done physical therapy 400 bajillion times. It doesn't work. I don't need physical therapy. I have this. This is what I have. I need this blood test specifically. I need to go see a rheumatologist. I need a referral to rheumatology. And he said, well, he wants you to try physiolog physical therapy for six weeks. And he wants you to take this specific muscle relaxer like three times a day. And I said, no, I am not going to physical therapy. I am not going to take muscle relaxers because they will not work. They have not worked. They will never work. I am going to sit here until you get me an appointment to rheumatology. I want a referral and I want it right now. And he kind of looked at me funny because at that point I had always been a very agreeable patient, you know. Yes, sir, thank you. I appreciate your time. And I don't really know what came over me that day because normally I am very polite, But I just looked at him and said, I'm not moving. I'm not leaving this room. You will not get me out of this exam room until I have a referral in my chart now. And so he left again, came back in the room and he said, okay, you have a referral to rheumatology. I don't think this is what it is. And neither does Dr. Whatever his name is. And I said, great, that's fine. You don't have to think that. But I do. So get my referral. They call within the week. I have an appointment within like two weeks time. They got me in very quickly. It's a new practice. It was a brand new rheumatologist, very young, had just started seeing patients. Like, when I went in for my appointment, you could still smell the paint from them painting inside. And I go in and I'm a mixture of terrified and kind of weirdly excited and hopeful and then really hoping that they just don't look at me and say, you don't need to be here and go in, sit down. This guy comes in, he's 25 years old, probably a little older, but I'm 40, so he to me, looks like a little baby doctor man. And I have never had a more thorough doctor's appointment in my entire life. I guess this is what you get when you finally actually get to the specialist you're supposed to get to. He looks at My chart. He asks me how long I've been having symptoms, and I say, 20 years. And he said, that sounds about right. And he said, how old were you when it started? And I told him I was early 20s. And he, you know, went through all these symptoms, and I told him about my aunt. And he said, do you have anybody else in your family that may have had back surgeries at some point in the past? Any type of spinal fusions, any type of nerve issues when they were elderly? Did you have anybody in your family that spine looked like they were curved over? And I said, yeah, my grandmother. She had an actual leg amputation because of nerve issues that they think came from her back, obviously, my aunt now. And he said, okay, we're going to order these blood tests. He said, I know they're going to come back positive. I can go ahead and tell you. And he said, just based off of everything, I think that you most likely will end up with a diagnosis of ankylosing spondylitis. So I have ankylosing spondylitis. What is that?

[Erin]

Sounds like a. It sounds like a bug that would, like, be pointless.

[Bethany]

Named after a dinosaur. It's named after an ankylosaur. They're very cute.

[Erin]

Okay, that's kind of. Do you guys have, like, dinosaur.

[Bethany]

I'm gonna get a dinosaur tattoo. I'm gonna get an ankylosaur tattoo. But it is a autoimmune disorder, so you were correct.

[Erin]

Okay.

[Bethany]

But it is also a type of inflammatory arthritis.

[Erin]

Okay.

[Bethany]

It primarily affects the si joints at the. At your. The lower spine.

[Erin]

Okay.

[Bethany]

And it causes insane amounts of inflammation to the point where eventually, if left unchecked, that inflammation will ca spine to fuse. So the spaces between the bones of your spine that are. That spongy disc material will just turn into solid bone. My immune system is basically seeing that section of my spine as it doesn't need to be there. Right. So my immune system is overworking itself. And there's so much inflammation in your lower spine, sometimes in your feet and your toes and your Achilles tendon, where it goes if you're in a huge flare. Because my immune system thinks that something is wrong. So it's basically fighting a fight it shouldn't fight. And so all of that is creating all of this inflammation that, in turn, does a whole lot of damage. If it gets really, really bad, it can go to your ribs, and it can cause cardiac issues because it can cause your ribs to fuse, which is not good for your heart. You need those to not be fused. So that your heart can do what it's supposed to do.

[Nance]

And if there is a disease that needs a rebrand, it is ankylosing spondylitis, because, number one, no one can say it. Number two, because you cannot say it. You can't remember what it is. People forget. It's not top of mind, but I can guarantee you there are a whole lot of women out there with fibromyalgia who definitely have ankylosing spondylitis.

[Bethany]

Yeah, 100%. 100%. Having an actual doctor look at me and say, hey, you were right. Your googling was right, you did the right thing, and you are in the right place. Was so incredibly exciting to just have a name, even if nothing got better, right? Even if I'm in this amount of pain forever for the rest of my life, however long that may be, having something to call it is so much better than not knowing and thinking you're crazy. So, you know, obviously that day I got in my car and I was smiling from ear to ear after that appointment, because I just thought, okay, okay, I, in fact, have not been insane for 20 years. I'm not crazy. I am not crazy. And after that initial feeling wears off and you have your name, you have your answer, you know, you're not insane. You now have to come to terms with the fact that you do, in fact, have a very rare, debilitating, extremely painful disease that will progressively get worse throughout your life. And now, Now I know at that point, because I had done all the Google research before I went to that doctor's appointment, I now know, okay, I know the medication that I'm going to have to take for this. I know that it's an injection that I have to do every week myself for the rest of my life so that I don't end up with fused spine or to keep it away as long as humanly possible. And I know that this medication is scary. It comes with a black label, and it tells you to be really sure before you agree to take this medication. And this is not for everyone. And you know, this will ruin your immune system. And it's essentially just like being on chemotherapy. And you have to be very careful and you have to be super, super aware of infections and cuts and scrapes that you may get. And so that all hits after the initial excitement of just knowing what it is. And that's when the. The anger, I think, starts of. I could have known this 20 years ago, and I could have kept it from getting to this point, because the medication that you Take for as keeps the fusion from happening to an extent. Right. Eventually it will probably get there, but it lowers your inflammation levels so that the inflammation does not cause your spine to fuse. And I have had 20 years of uncontrolled inflammation in my spine, and God knows what that has already done in there. So basically I was just told that this is, you know, it's rare. My rheumatologist thinks that probably a lot more women have this than they think. And a lot of people are probably walking around without a diagnosis just because of how difficult it is. I think the average time from the onset of symptoms to diagnosis, the Average time is 15 to 20 years, which is absolutely ridiculous. But it's. In my case, it was 100% true. I was at. I was at 20 years. So you just, you just feel mad. You feel so, so mad that no one caught this. Like, not one doctor out of 15 easily that I saw thought, huh, that's weird. We should probably send her to a specialist. But nobody did. And so it's just. There's still a lot of anger there. There is still a lot of relief that I know what it is and know how to fight it, but there is a lot of anger that it went unchecked for as long as it did.

[Nance]

I mean, I will tell you, I say this all of the time. It is so easy to Monday morning quarterback the situation. But if any orthopedist hears that you have morning stiffness, that is like on your exam, the multiple choice send to rheumatology.

[Bethany]

Yep.

[Nance]

Okay. It's not even that. That was not even.

[Bethany]

Yep. Hard. It is a giant red flag.

[Nance]

Giant red flag. Wake up morning stiffness and this pain. If they say that they have morning pain and morning stiffness, you get a pass to rheumatology.

[Erin]

That's wild that you didn't get.

[Bethany]

Get sent there because I was female and just happened to also be a dancer and pregnant at the times, things were the worst. They were. So there were a lot of other things to blame pain on. But now that I know it should have 100% been, she's waking up in extreme pain and she wasn't in extreme pain when she went to sleep. That is textbook inflammation. Right. I can't straighten out my back for an hour and a half to two hours in the morning. I can't stand up straight. I am stiff for an hour and a half to two hours every single morning. It should have immediately been, oh, here we go, rheumatology. But it just. There were a lot of failures on My path, and especially with my grandma, who had extreme back pain as far back as I could remember. I remember her complaining about it. And now we know, too, that if this goes unchecked into your senior years, that the fusion in the wrong spots or the inflammation that has been so chronic for so long can cause a lot of nerve damage, which is what essentially happened to her leg, is that she ended up having to have her leg amputated because the nerves in her leg were dying. They didn't really know why. They knew they were, but they didn't really know why. There was no real investigation into why that happened. Now I'm almost 100% like this. She also had as, and this is what it did to her because she never had medication to help it. And I just remember her being in such an incredible amount of pain all the time. And even when she was younger, just how much she would try to push through. I remember she was like the grandma who would take us all shopping. Like, she would walk the malls with us in the 90s for hours and hours and hours and hours. And I just remember she just. She would push through all of it to spend time with us. And now, knowing how I felt in major flares, like, man, it's extremely sad to know that she suffered, most likely with this her entire life and never had an answer. And at least now, moving forward, I can share this with anybody that might share my DNA and say, hey, go have this checked out. And it helps me feel a little bit better. But it is very sad when I think about having that firsthand experience of how much I was in pain and then thinking about adding 40, 50 years onto how much I was in pain. Sucks. It sucks.

[Nance]

Has there been any talk about having your children tested?

[Bethany]

Not yet. Because usually the onset of symptoms is 20s, 30s. So obviously, now that I know that I have this, I'd already had all of my kids, but that guilt is definitely there. Of I could have given this to all three of them. And chances are one of them. I have three. Chances are one of them has it.

[Erin]

Yeah.

[Bethany]

And it just hasn't shown up yet. The good news is that I know. And the second, if and when anything starts with any of the three of them, they will have a very fast track to diagnosis because of me, which is a comforting thought, kind of. You know, I don't want my kids to have this. It's terrible, and it's life changing. But they would have the benefit of starting treatment way earlier than I was ever able to.

[Erin]

I would say that one of the things that's been really fascinating to me is that people have one of two perspectives on diagnosis. Right. They either really want to be diagnosed so that they can alleviate that stress of feeling, I guess, for lack of a better word, not mentally sound.

[Bethany]

Right. Right.

[Erin]

But there's also this other side of it for people who just want to be ignorant because knowing is having to face the fact that you are sick. Right. And I think that, at least in your case with your kids, even though ignorance might be something they don't do, which. Which is. It's just like such a tough situation. Right. Because until it is crippling, even in your. I'm just going to use this case as an example. You didn't advocate fully for yourself until it really became a problem. And that doesn't make what you did wrong or anything. You did what anybody would have done because a, you probably thought, well, maybe I'm overreacting or things like that, but there was probably some comfort in not knowing. Right. And I would say I've done that to myself. I feel like every person goes through it. But at least with your kids, they're not going to waste that time.

[Bethany]

Right.

[Erin]

Because they're not going to be in that situation of not knowing. And again, I did not say that in any way to like, oh, no, no, no. Say, like, oh, you didn't take care. Because it's not that simple. It's not.

[Nance]

I'm. I'm about to give actually a TED Talk in two weeks where I'm going to be talking about our genius. What I'm going to be talking about are the stages of misdiagnosis, and the first stage is denial.

[Erin]

Yeah.

[Nance]

Like that's. That is a normal thing to go through.

[Erin]

I think it's easier. Right. To just say I'm. I'm. It's just a fluke.

[Bethany]

Right.

[Erin]

It'll get better.

[Bethany]

Right, Right. It's a lot easier to say that. Yeah.

[Erin]

Yeah.

[Bethany]

Until it slaps you in the face.

[Nance]

Until. Until you can no longer deny it and. And then you move on to the next stages. But, yeah, that's. That's a totally normal phase to go through. And I will say that now that you are able to give your children this gift of knowledge that they can empower themselves to, as Anna said, you know, shorten that time, be more attuned to their body, not necessarily brush things off. And I think it's going to make their journey much, much easier.

[Bethany]

Right, Right.

[Erin]

And they won't be alone in it.

[Bethany]

Right. Yeah. That is. That is definitely the better feeling of all of this is if and when something happens, the answers are already there. And you and Brenda got their back. Yeah, they don't literally, I have their back. They might have my back. So, so yeah, that's. It is, it's, it's comforting as at the same time as being, you know, as a mom, you don't want your kids to have to go through anything like this. I don't want to think about any of my children being in excruciating pain like this as their parent. So hopefully, and you never know, 20 years from now, treatments might be a totally different world. What I have now for treatment might be different for any kids down the road.

[Nance]

And really it's about you sharing your story as a young 20 year old woman so that any orthopedist who's out there and still has, in the back of their mind, it's a male disease, they'll remember. No, it was a young ballet dancer. Right. And they should have known your job is to be limber.

[Bethany]

Right, Right. I, I mean, it's still the, the goal, you know, and obviously the reason that I wanted to do this today is to not only educate people, but just to spread awareness of something that not a lot of people know exists. We don't have a huge amount of funding. We don't have. There's not a major research team for ankylosing spondylitis. And, and just even to educate physicians, like I got in a car accident after my diagnosis and went to PT for a little bit for my shoulder. And you know, they do the medical history and I told the guy, I have ankylosing spondylitis. And he went, whoa, that's crazy. You're a girl and you have ankylosing spondylitis. He was absolutely adamant that ankylosing spondylitis is a men's disease. And, and while it does happen, it does occur in women. It is more like 80, 20 instead of 50, 50. And I, you know, looked at him and said, that is absolutely not the truth. And there are newer studies that have been done that are very, very recent, like within the past two years that suggest that in fact this is equally affecting women just as much as it affects men. And he, he did not want to hear that. I think, I don't think doctors enjoy it when you question their knowledge. And I, I wouldn't enjoy it either if someone came in my dance studio and said, hey, you're teaching a plie wrong. Like, cool. I wouldn't, I wouldn't like that either. But in this case, it is something that needs to be corrected. We need to make sure that women are hearing that, yes, you can have this. This is just not a men's disease. I think that the research is. Is catching up a little bit, but I do think that also those older medical studies, their test subjects were men. Their. Their research was on men because women weren't being taken seriously. So of course the diagnosis wasn't there. The pool in which to pull their research from wasn't there because historically, women are not taken seriously. So, of course, the old research says this, and of course, the newer research is changing because now we're just getting louder.

[Erin]

I think that as we grow further and further into understanding illness overall, because, I mean, just think of the medical advancements that have been made in, like, the last 20 years.

[Bethany]

Like, it's insane.

[Erin]

We learn how little we actually know.

[Bethany]

Right?

[Erin]

It's a great example of how little we know.

[Bethany]

Right? 100%.

[Erin]

Yep.

[Nance]

Well, Bethany, thank you so much for sharing your story, for educating both us and all of our listeners. You know, I will tell you, I did two years ago a TikTok series called the 31 for 31 most commonly misdiagnosed conditions in women and ankles and spondylitis was one of them. And the comments that I received were mostly people with as saying, thank you so much for even including this in the series, because there were a lot of them. They were very vocal. And as I said, I think that there are many women who are misdiagnosed with other diseases when it really is ankylosing spondylitis. So don't be afraid of the name. It's not gonna bite you like a dinosaur.

[Bethany]

No. Well, thank y'all. I appreciate the platform and being able to at least increase awareness on. On something that affects, I think, a lot more people than we realize.

[Erin]

I have a feeling someone's gonna listen to this and it's gonna definitely turn on a light bulb.

[Bethany]

If I. If one person can get diagnosed from me being unhinged on a podcast, then I will. It was worth everything. And, you know, that's step one. Sometimes an answer is better than nothing.

[Erin]

Yep.

[Bethany]

So.

[Erin]

What an episode. I should say that I'm not surprised, but every single time, I'm surprised because it's never what I thought it was going to be.

[Nance]

This is a hard one, this one. I mean, I, as an orthopedic surgeon, I am technically, you know, in one of the experts in this disease, But I will say it does kind of Throw you for a loop when someone presents who is not what you learned in your textbook as the presentation.

[Erin]

So here's my question to you because I, I really don't understand how the data could be so inaccurate. Right. In listening to this episode. Like why do they think that the majority of people that have it are men? Like, how does that statistic get so wrongly presented? I know there was a mention of they believe men more, but I feel like there's gotta be more to it than that.

[Nance]

Yeah. I think with this particular disease, what we now know, if we go from now to then, going back then, is that women have a different presentation of the disease in that they don't have it as bad now. I know it sounded like she had a terrible. But. But to be honest, most of the times when men are being diagnosed, they're being diagnosed at a later stage. And so their spines have already fused, their sacroiliacs have already fused, they can't even, you know, bend at all. So that's how the disease came to be known as. Okay, it's these older men who have fused spines. But what wasn't understood was probably an earlier presentation, which we now know for women is a little bit more diffuse pain.

[Bethany]

Right.

[Nance]

It's not all like concentrated in their back.

[Bethany]

Right.

[Nance]

She talked about she had like toe pain and pain in her Achilles. So because women present with a more, I would say, subtle and nebulous presentation, it's hard to go from, oh, you have heel pain and toe pain, you've got ankylosing spondylitis, it's not a direct kind of, I would say, match. So because women have different presentations of the symptoms, they were just never included because they never actually got the diagnosis. And then probably what happened is that unlike people who, and I have to give it to Bethany for being so strong, but people just give up, they give up on trying to find a diagnosis and so they never actually get counted because they never got to that point. So I think it's a combination of probably something having to do with women having XX chromosomes and different hormone levels. It affects how disease affects them differently. So they have different presentations. And this happens with women with adhd, right. When you close your eyes and you think, who, who has adhd? Who pops into your head?

[Erin]

An eight year old boy, A little boy.

[Nance]

A little boy who's throwing things in the middle of the classroom, can't sit still. Right. And for years we were told that it's, it's a disproportionate amount of boys who are affected with adhd. And now we know that is not the case because the presentation of ADHD in girls and women is different.

[Erin]

And I think in general too women are fundamentally hormonally different and a lot of these studies initially are done on men. So it's hard to compare research done on men and apply it to research on women because we're just built different.

[Nance]

And to give some context about why that is, is that so there's a lot of history with women in clinical trials. Probably one of the most famous cases of women being offered medications that are new is thalidomide. Right. And this is a drug in the 60s that was given to women for anti nausea. And because there was not long enough treatment studies on pregnant women, it caused unthinkable deformities, physical deformities in the babies. And so they were born with flipper type limbs. And if you have ever googled thalidomide baby, the medication first, I will be googling it. The medication first came out in Europe so it didn't have as much of an effect in the United States population. But there was a whole generation of children born in Europe that suffered from the thalidomide side effects. So because of that there was an increased scrutiny on including women of potentially child rearing age in including them in research studies because they didn't want any catastrophe like that happening again.

[Erin]

Deformities. Yeah.

[Nance]

And so and then another part is that to have a study, you want to eliminate as many variability as possible. Right? Because you're trying to think, okay, we are integrating this one, change this one drug into this person's life. How are we going to measure that effect? And because women have cyclical periods of their hormones, they said, well that's just too much variability and we're not going to be able to say whether the drug did or didn't work because of potentially now some may argue, well, we should know if a drug didn't work because of the cyclical, you know, cyclical nature of a woman's hormones. And that's why a lot of the medications, the dosages are not effective for women or are harmful for women because we don't know how those effects, because they weren't. Women were never included in studies. And it wasn't until 1993 that there was a law passed requiring pharma to include women in their studies.

[Erin]

So I'm going to throw an extra wrinkle in this. Obviously I live in a bigger body, but medications are often not tested on bigger bodies. So things like plan B may not be effective for a bigger body because, again, when you're trying to control. And I actually know this because my background is statistics, I actually did a master's in quantitative methods in the social sciences. So when you're designing a test, you do really want everything to be the same. So you would look for people that were similar weights, similar heights. If we were starting to control for periods, we would look for them all starting the periods on the same day and making sure that they all had regular cycles. But that means that you're only getting research on that criteria that you put in there, and you start having to think about different sample sizes of populations that you just didn't serve because it's too expensive to do the research or there's not an intent to do it. So there are a lot of medications for bigger bodies that have never actually been tested on a bigger body. And so is the dosage correct? Well, you know, some of them you can dosage by weight and test and titrate up or down. Some of them we just have. We don't know. And I think that's. I think it will always be an issue with our medicine because you can't ever create a study for every variation. And the more you try to normalize a study, you're always going to miss somebody. But I think a whole gender is a little bit much.

[Nance]

I mean, this will blow your mind. All the mice are male.

[Erin]

No, the mice are. No, female mice.

[Nance]

No, the mice are male, number one. Because it's a good day to be a female mouse and less variability. So I think, you know, when these research studies were designed, I don't think anyone intentionally thought we are just, you know, not including women. But the problem is that there are consequences to those decisions. And the consequences is that we have a dearth of research that includes women, that we don't know how these medications are affecting women. Not just medications, but also just the social sciences. I mean, I, as a female orthopedic surgeon, who. There is only 6% of orthopedic surgeons are female. All right, when I think back to my fellowship research project, everyone had to do a research project to graduate. And I said I wanted to study wrist pain in yoga. And they looked at me like I was crazy. They're like, why? Why would you study that? Who cares? I was like, who cares? Millions of people do yoga and have pain in their wrists. Like, I don't need to do another thousandth study on Tommy John surgery for pitchers. And if it wasn't for me fighting to do that study. I was the first study in orthopedics to be published about yoga injuries in the wrist.

[Erin]

I mean, thank you. Thank you for doing that research. But also, come on, like, people should have been studying these things previously. But I think, if anything, I think we can end this episode with one thought, is if anybody's listening to this, that's considering a career in medicine. And as a woman, we need you. Because the research will not move forward without women advocating for that research. The treatment of patients will not move forward without patients advocating for proper care. So if we as women want to have better treatment, we have to demand it. And that sucks. I'm not going to say that that's fair. I'm not saying that that should be the way. But I feel like for us to move forward and receive better care as an entire part of the population, we have to put ourselves in the driver's seat. And every episode I learn a little bit more about how to do that. And Erin, I did not know about your research and some of the impressive firsts you have, and I'm sure you have more of them because Lord knows you are a very smart woman. But for all of us who are listening and living with conditions that have been misunderstood because of our gender, thank you. Thank you for pushing in the way that you could push. And to any doctors who are listening or patients, keep pushing because it is worth it.

[Nance]

Well, thank you. And I will tell you, there is a huge movement of women scientists who are taking control in their own hands and they are the ones, you know, designing the research studies because in the end, no one is coming to save us but ourselves.

[Erin]

Agreed. It's just a reminder to keep pushing until next week. Until next week, guys. Thank you so much.

[Nance]

Bye.

[Erin]

The Medical Detectives is a Soft Skills Media production produced by Molly Biskar Sound designed by Shane Drauss if you have a medical story you'd like to see featured on the Medical Detectives, please email it to stories themedical detectives podcast.com the.

[D]

Information provided on the Medical Detectives is for informational and entertainment purposes only only and should not be considered medical advice. While we may feature licensed medical professionals, including doctors, we are not your personal doctors and no doctor patient relationship is established by listening to this podcast or interacting with our content. All discussions are general in nature and may not apply to your specific health situation. Always seek the advice of a qualified healthcare professional before making any medical decisions or taking any action based on the content of this podcast. Never disregard professional medical advice or delay seeking treatment because of something you have heard on this show. If you are experiencing a medical emergency, please contact emergency services immediately or consult a qualified healthcare provider.