Feminist Survival Project: Hair Transformations and an Intro to Hidradenitis Suppurativa

Released on August 14, 2025

Hosts: Emily Nagoski and Amelia Nagoski
Guest: Jessica

Introduction

In this episode of the Feminist Survival Project, sisters Emily and Amelia Nagoski delve into the intricate journey of personal transformation, both physical and emotional. The episode primarily focuses on hair transformations influenced by hormonal changes and introduces listeners to the lesser-known autoimmune condition, Hidradenitis Suppurativa (HS). Through candid conversations and personal anecdotes, the hosts aim to shed light on the challenges faced by feminists who juggle multiple stressors while striving for well-being.

Personal Hair Transformations

Sarah's Mullet Makeover (00:13 - 02:34)
The episode opens with Sarah (likely Amelia) sharing her bold decision to cut her hair into a mullet at the age of 48. She attributes this transformation to the hormonal fluctuations experienced during perimenopause, which altered her hair texture from barely wavy to full ringlet curls.

Sarah (00:13): "I cut my hair into a mullet... it's my first ever mullet. The age of 48."

This personal change becomes a metaphor for the broader theme of adapting to bodily changes and embracing one's evolving self.

Introducing Hidradenitis Suppurativa (HS)

Understanding HS (02:39 - 07:32)
Jessica, a guest with personal experience of HS, introduces the condition, highlighting its prevalence and the struggles associated with diagnosis. She emphasizes that HS affects 4% of the population, making it more common than autism (which affects 1-2%).

Jessica (03:01): "Hidradenitis suppurativa is an auto-inflammatory disease... it results in a huge boil, incredibly painful, large breakout."

Jessica explains HS as a condition where the immune system overreacts to minor follicular blockages, leading to painful cysts and abscesses primarily in areas with skin folds, such as armpits and groins.

Medical Explanation and Stages of HS

Stages of HS (06:10 - 07:32)
Jessica breaks down HS into three stages:

1. Stage One: Occasional lumps or boils.
2. Stage Two: Multiple interconnected lesions forming tunnels under the skin.
3. Stage Three: Extensive mass of tunnels and abscesses without healthy tissue separating them.

Jessica (07:05): "Stage one is when there's an occasional kind of lump... Stage three is when there is no healthy tissue and, like, a whole big mass of skin."

She clarifies that these stages do not measure severity but rather the progression of the disease.

Challenges in Diagnosis and Medical System

Difficulty in Diagnosis (09:49 - 13:20)
Jessica shares her frustrating journey through multiple gynecologists who failed to diagnose her HS, despite presenting clear symptoms.

Jessica (09:49): "I've seen half a dozen gynecologists, none of whom clocked it."

She highlights the lack of awareness among medical professionals and the stigma associated with HS, which often delays diagnosis by an average of seven years.

Jessica (17:43): "On average, HS takes seven years to get diagnosed."

This section underscores the systemic issues within the healthcare system, particularly for women in the U.S., and the emotional labor required to secure a proper diagnosis.

Impact on Daily Life and Mental Health

Living with HS (14:00 - 25:14)
Jessica discusses the debilitating pain and physical limitations caused by HS, comparing it to other painful conditions like shingles.

Jessica (05:10): "It's incredibly painful."

The chronic pain and visible scars significantly impact her quality of life, leading to social isolation and increasing the risk of suicide among HS sufferers.

Jessica (24:55): "People with HS are twice as likely to die by suicide."

This segment highlights the profound emotional and psychological toll of living with HS, emphasizing the need for empathy and support.

Coping Strategies and Treatment Options

Managing HS (20:11 - 29:00)
Jessica outlines various strategies to manage HS, including dietary changes like adopting a low-sugar, low-carb diet, which have personally helped reduce the severity of her outbreaks.

Jessica (21:48): "Super low sugar, super low carb... it does reduce the severity of HS outbreaks."

She also mentions potential surgical interventions, such as laser hair removal and deroofing abscesses, which can provide long-term relief for severe cases.

Jessica (23:54): "There is evidence to show that surgery can work long term."

Furthermore, understanding and tracking personal triggers, especially hormonal fluctuations, play a crucial role in managing the condition.

Jessica (37:17): "Tracking over months and figuring out what the triggers are."

Importance of Awareness and Community Support

Breaking the Stigma (25:14 - 41:55)
The hosts emphasize the importance of raising awareness about HS to reduce stigma and provide solace to those affected. By sharing personal stories and providing a platform for dialogue, they aim to foster a sense of community and understanding.

Sarah (25:14): "Knowing about it and understanding that they're not alone... they don't feel quite so isolated."

Jessica encourages listeners to seek support, connect with others who have HS, and advocate for better recognition and treatment options.

Jessica (41:13): "I hope I helped one person. Because you have a name for it."

Conclusion

The episode concludes with a powerful message of hope and resilience. Emily, Amelia, and Jessica remind listeners that they are not alone in their struggles, whether dealing with physical transformations or chronic illnesses like HS. By fostering kindness, compassion, and mutual support, they believe that individuals can navigate the complexities of their bodies and societal expectations without succumbing to burnout.

Sarah (28:22): "Kindness and compassion. Turn toward the uncomfortable situation with kindness and compassion."

The discussion serves as both an informative and empathetic guide for feminists feeling overwhelmed by their multifaceted challenges, reinforcing the notion that strength lies in understanding, support, and self-compassion.

Notable Quotes:

• Sarah on Self-Acceptance (00:13): "I cut my hair into a mullet... it's my first ever mullet. The age of 48."

• Jessica on HS Pain (05:10): "It's incredibly painful."

• Jessica on Diagnosis Delay (17:43): "On average, HS takes seven years to get diagnosed."

• Sarah on Community Support (25:14): "Knowing about it and understanding that they're not alone... they don't feel quite so isolated."

• Jessica on Hope (41:13): "I hope I helped one person. Because you have a name for it."

This episode of the Feminist Survival Project not only educates listeners about a debilitating condition but also weaves in personal narratives that resonate with anyone grappling with bodily changes and systemic challenges. Through vulnerability and shared experiences, Emily, Amelia, and Jessica offer a beacon of understanding and solidarity.