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.