In her book, Dr. Mullan underscores the importance of taking someone’s family history as well as the broader environment and society into account when healing complex trauma: “A mental health practitioner may work on relational issues with a person, focusing on childhood events, abandonment, abuse, attachments, and family dynamics—which are all relevant and can be important. However, if ancestry, homeland, mother tongue, or a disconnect from any of these aspects of culture and current political climate are not discussed, then the therapy is incomplete… We victim-blame by focusing on personal deficiencies and trauma, rather than structural violence.” 

Suddenly, my sternly dysfunctional family made more sense. I started doing ancestry research after my mom sent me an article about the history of the town my family settled in in the early 1700s. From what I’ve been able to gather, my mother’s side of the family began to emigrate to North America around the time of the 1695 Penal Laws in Ireland. By this time in Irish history, the brutality of colonization was already centuries old, and there were already laws banning the language. The Statutes of Kilkenny in 1367 banned the language and traditional Irish dress. The Penal Laws of 1695 forbid the practice of Catholicism and further ban Catholics from getting an education, holding a job, owning land, voting, bearing arms, holding public office, or engaging in trade or commerce, among other things.   

My family settled in what is now Eastport, Maine, near the border of Canada. It’s a beautiful but challenging area. The town of Eastport became a hotbed of smuggling leading up to the War of 1812, and was occupied by the British for four years, extending two years beyond the end of the war. Multiple surnames from my family showed up in records about smuggling. When my mom and I went to Eastport, we went to the historical society. I asked if it was plausible that our family was heavily involved in smuggling. The curator laughed, “Everyone was involved in smuggling here.”  

Today, Washington County has the highest poverty rate in the state. When my great-grandmother was born in Eastport in 1898, the family got by with very little. When I asked my grandmother about what it was like growing up during the Great Depression, her laughter was somewhat bitter. “We already had nothing,” she said.  

When I reflect on my experiences of growing up in the 1970s, I realize how much of it was under the shadow of oppression. Forced to flee their homeland, my ancestors came here only to find an arduous life where things remained difficult for generations. They worked long, grinding hours, and struggled to make ends meet. In the 1940s, my grandfather started a welding business that did well. We got by. We knew some family stories, but any sense of heritage was absent. We were never a cuddly family. Emotions and affection were very limited. If something terrible happened, you pushed forward with grim determination. Generations of living in survival mode and functional freeze resulted in a long line of dysregulated nervous systems. As a result, I’m not very good at identifying emotions, either in myself or others. In my therapy sessions, I keep a wheel of emotions available to guide our discussions. But some sections of the wheel are obscured, like the old maps that have areas that say, “here be dragons.” I’m still figuring some of them out.     

As a part of the diaspora, I now see how the erasure of culture and language affected us. I’ve struggled with dissociation for many years, but especially in childhood. I never really felt part of this world. In elementary school, I told a story about being kidnapped from the fairy realm—the otherworld. And somehow, I belonged neither here nor there. As I read Dr. Mullan’s words about the concept of Home, it struck me that this untethered feeling about my ancestry had something to do with it. She asks, “Is it a place, a space, or energy within your body? Is Home with a community, or among your beloved friends? Is Home merely an abstract concept, a movement practice, or a land? I would like to think that this concept—a concept of Home—is synonymous with a deep sense of safety on all levels: emotionally, physically, culturally, spiritually, racially, energetically, and internally. A place where you feel safe, guarded, protected, seen, loved, and appreciated. At its core, ‘feeling at home with something’ should feel familiar and safe.”  

Further, this passage from Decolonizing Therapy had a powerful impact on me: “After people return to their bodies and feel that they are in their ‘right mind,’ they can make decisions about what they need and how they want to heal—and most importantly, the ROOT of that dis-ease. If we do not examine and honor the root of the suffering, such as colonization and dehumanization, we will continue to experience the same suffering over and over without a map.”  

Learning more about my heritage has helped me understand the pain of those who came before me, and shed insight into the quiet state of dissociation that relatives like my grandmother lived in for much of their lives. I’ve only recently felt true embodiment after practicing somatic therapy for several years. As I work to heal from many years of living with CPTSD without any framework of what it is or how to manage it, I dug deep into the history and culture of my ancestors and found stories of healing in Irish lore. I started with a membership to the Irish Pagan School and tuned into dozens of classes about history and mythology. From there, my new research obsession branched out into dozens of resources they recommended along the way, and it’s become a form of art therapy that is essential in my healing journey.  

In Sweeney Astray (translated by Seamus Heaney), we meet Suibhne Geilt, also known as Mad Sweeney. Cursed in battle, the pagan king flees to the wilderness where he lives in a state of madness that bears a strong likeness to PTSD. There are descriptions of hypervigilance, flashbacks, avoidance, and a perpetual feeling of a lack of safety. His shapeshifting and allegiance with the animals in the wild serve as a metaphor for isolation. We even have multiple men in my family who, like Suibhne Geilt, lived alone in the wilderness because they rejected contact with people. Suibhne Geilt has become somewhat of a patron saint to me, as have other figures in lore.  

Queen Medb (Maeve) taught me about sovereignty: that no man could just claim the land, that sovereignty was gifted by the goddess of the land. She taught me sovereignty of self and how we’re designed to feel pleasure, to enjoy embodiment on our terms. An Cailleach, another goddess of the land who presides over winter and is a trickster and shapeshifter, taught me how to claim my power as an older woman. In ancient lore, the wise woman (bean feasa) was a healer of a variety of types of trauma. As I process my own trauma, I’ve been creating my own program to help others. It started with talks to medical students and healthcare providers about the neurobiology of trauma and the principles of trauma-informed care. A key part of understanding CPTSD is learning about the wide array of chronic medical problems that come with it. This effort became a side business that continues to grow, and not a day goes by where I don’t thank those who taught me this lore—it’s the fuel to this healing fire that I’m sharing.    

I found ways to give back to my ancestors: I started to learn the language and donated to help replant trees native to Ireland. Massive deforestation resulted in the loss of most of Ireland’s trees. Once, trees covered 80% of the island, and it was down to 1% in the 1800s. My ancestral land needs healing as well.  

It takes a lot of effort to undo all the chronic stress I’m carrying, but I’ve come to love the work itself and the process of discovering who I am and how it feels to be present. Decolonization work has been a key part of that, because now I realize that you cannot remove history from who we are as individuals. It takes its toll whether we acknowledge it or not. Through Dr. Mullan’s work, I gained affirmations that allow me to hold more compassion for my family and grieve for a place I have never been.  

Sources 

“Since Feathers Have Grown on My Body: Madness, Art, and Healing in Celtic Reconstructionist Spirituality,” Erynn Rowan Laurie. Disability and Religious Diversity, 2011.   

Decolonizing Therapy: Oppression, Historical Trauma, and Politicizing Your Practice, Dr. Jennifer Mullan. W. W. Norton & Company, 2023.  

Photo by K. Mitch Hodge on Unsplash

Guest Post Disclaimer: Any and all information shared in this guest blog post is intended for educational and informational purposes only. Nothing in this blog post, nor any content on CPTSDfoundation.org, is a supplement for or supersedes the relationship and direction of your medical or mental health providers. Thoughts, ideas, or opinions expressed by the writer of this guest blog post do not necessarily reflect those of CPTSD Foundation. For more information, see our Privacy Policy and Full Disclaimer.

Lee Frost

Lee Frost has worked for nonprofits and marketing agencies focusing on healthcare for the past twelve years. She has a blog about perimenopause and CPTSD called the Sinsemillier, and is working on a trauma-informed education program called the Shapeshifting Crone to help people with chronic illness and disabilities who have experienced medical trauma and gaslighting. Lee grew up in the Boston area and has a master’s from Harvard Extension School and has earned several certifications in trauma-informed care. She lives north of Boston with her husband, where they both love to nerd out on sci-fi and fantasy.

lee.f

I found the photo not long after being diagnosed with CPSTD. Little broken me looking into the camera with a depth of pain and sorrow that no child should have to bear. Repeated sexual assaults and denigrating abuse continued for two years until my great-grandmother discovered that I was covered in bruises and welts from the neck down. I lived with extended family after that, joined by my mom months later after she was able to remove herself from that failed marriage. While I was safe, there was still plenty of chaos in the family. Alcoholism, trouble with the law, and all manner of dysfunctional behavior were ever-present with other family members.   

It was the early 1970s, and my family wasn’t the type to talk about emotions. You got over whatever it was and moved on. On your own. Whenever I brought up the subject of those terrible memories, I was met with frustration and told to be silent and learn to live with it. My mind fragmented, and I was two very different little girls: the quiet kid who walked to the library on her own and spent hours at a time hidden in little nooks that adults passed by without noticing, and the wild rebel who tore up the neighborhood with her other wild child friends. There were multiple suicide attempts, all disguised as the kinds of reckless things that kids do—except I knew what I was doing—and yet somehow I survived one extremely dangerous daredevil stunt after another.   

Hiding in cabinets and attics became my safe space. Everyone else thought I was playing. Nothing could’ve been further from the truth. I curled up, muscles painfully tight, often holding my breath. I coped through maladaptive daydreaming. Depersonalization and derealization were twin phantoms that pushed me far away from the world. Obsessed with reading, after I got through the kids’ books in the library, I moved my way through the young adult section and eventually dove into the adult stacks, topic by topic, and found solace in folklore and mythology, history, literature, and science. I created worlds of my own and didn’t want to be here. I hated being touched. I still do.  

The wild child phase ended in junior high when sexuality started to emerge, and people started making jokes, flirting with each other, and going steady. I wanted none of it. Sensing my awkwardness, the bullies found an easy mark. The dissociation deepened.  

Somehow, I was an ace student who participated in an exchange program my senior year of high school, doing my best to come out of my shell as a burgeoning witchy Goth girl in West Berlin a couple of years before the Wall came down. I came home and worked for a while to earn money for college. After a disastrous first year fueled by binge drinking, I checked out again and spent the next several decades lost—disconnected from a world in which I felt I had no place. I felt like some creature abducted from the Otherworld, belonging neither here nor there. I went through the motions—got excellent grades and went through a series of jobs in my twenties, having no idea what I wanted to do with my life. I honestly didn’t expect to be here this long. Beer and mead brewer, an entry-level assistant at a record label, and a bunch of meaningless desk jobs.  

Relationships came and went, and after leaving an emotionally damaging marriage that I have no explanation for getting into in the first place, I established my Fortress of Solitude, hanging out with a very small circle of friends and working myself to exhaustion in academia. Between 70-hour workweeks and getting one academic degree after another, I had no patience for people until an old crush from high school found me on social media. Slowly, things began to change. I left the soul-crushing job in academia and found my way to working in healthcare in an environment that I truly enjoyed.  

They say when you actually start to feel safe, everything crashes, and the trauma surfaces. That, combined with the hormone chaos that is perimenopause, brought it all to the surface, and the crisis hit hard. At the age of 51, I was diagnosed with CPTSD.  

Suddenly, it all made sense. The many medical problems that plagued me. Too many trips to the hospital to count. The diagnosis came just as I was struggling to get help with fibroid tumors and endometriosis. Research studies indicate that girls who suffer severe sexual abuse are around 79% likely to develop endometriosis and other chronic pelvic problems. The chronic pain worsened over more than 20 years, and by the time I finally had surgery, the damage was extensive and the tumors were so big I looked pregnant. But I was finally on the road to recovery.  

I disliked wallowing in talk therapy and found somatic therapy to be a much better fit. Once I learned about the biology of stress and how the autonomic system functions, managing flashbacks became easier. According to my nervous system, I was still that child hiding in the cabinet. I finally convinced her to emerge and breathe a sigh of relief.  

It’s been 3 years since that diagnosis rocked my world and changed me forever. My work as a disability advocate pairs nicely with my day job as a digital strategist in healthcare. I fight for better quality care and equity every day, making the case for the widespread practice of trauma-informed care. It’s for more than PTSD/CPSTD—people with chronic medical conditions who struggle for years to be heard and taken seriously deserve trauma-informed care as well. Over the past year, I’ve been working with instructors in medical schools and other educational organizations to talk about CPTSD and all the medical problems it brings with it and talk about trauma-informed care from the patient’s perspective.  

And I’m finally finding myself as well. The witchy Goth girl who blossomed in West Berlin has become a content bog witch who still enjoys plenty of quiet with my husband and dog, but now I’m writing, crafting, illustrating, and expressing all the things that have been trapped inside for years.  

There are moments when the grief takes hold, and I mourn all the time lost to dissociation. How many years were wasted working myself sick? I felt like an awkward child around my peers like somehow I had never grown up. I finally found an amazing trauma-informed coach who can help me navigate through the pain and help make somatic therapy more effective. I may be in my Crone years, but I’m not going to waste a moment of it. This Crone has found her power. No matter where you are in your complex trauma journey, there’s hope. Today, when I look at that photo of that terrified child, it still hurts, but she’s the one who empowered me to embrace who I am now and encouraged me to do what I can to help others who have had similar experiences. There’s a place for us out there, and we deserve to savor every moment we can.  

Photo by Lee Frost

Guest Post Disclaimer: Any and all information shared in this guest blog post is intended for educational and informational purposes only. Nothing in this blog post, nor any content on CPTSDfoundation.org, is a supplement for or supersedes the relationship and direction of your medical or mental health providers. Thoughts, ideas, or opinions expressed by the writer of this guest blog post do not necessarily reflect those of CPTSD Foundation. For more information, see our Privacy Policy and Full Disclaimer.

Lee Frost

Lee Frost has worked for nonprofits and marketing agencies focusing on healthcare for the past twelve years. She has a blog about perimenopause and CPTSD called the Sinsemillier, and is working on a trauma-informed education program called the Shapeshifting Crone to help people with chronic illness and disabilities who have experienced medical trauma and gaslighting. Lee grew up in the Boston area and has a master’s from Harvard Extension School and has earned several certifications in trauma-informed care. She lives north of Boston with her husband, where they both love to nerd out on sci-fi and fantasy.

lee.f

A years-long quest to get fibroid tumors and endometriosis addressed culminated in me being bedridden with chronic pain for two years while I sought care. The pandemic made this quest much more complicated: one ob-gyn told me that I couldn’t possibly feel pain from a few pounds of tumors and elective surgery was closed in hospitals around the country. As a result, the waiting felt endless. I found help in an area hospital that came highly recommended. Surgery was scheduled and then delayed repeatedly as COVID infections thinned OR staff. A common pain medication was prescribed to hold me over. Unfortunately, I was one of a tiny percentage of people who had a toxic reaction to it, which led to several trips to the ER. Because of the way this pain med affected my nervous system, the effects on my cognitive state were devastating. Upon learning I have CPTSD, one ER doc told me I was simply having a panic attack and needed to go home and calm down. The outcome was nearly fatal. Fortunately, the problem was recognized in another hospital, and, weeks later, I finally had the surgery I needed. But the whole saga left its mark on me. Though my childhood trauma is like an old enemy, since I’m familiar with it and know its patterns, this new medical trauma is still unpredictable and takes me off guard on a regular basis.  

Once I recovered from surgery, I wrote about the experience for the CPTSD Foundation blog, and Fay reached out with an interesting offer. Over the course of a year, I worked with her on developing a curriculum for her students that provides an explanation of CPSTD, the range of medical problems that come with it, and ways to work with patients who live with it. She then presented me with a big honor: Would I do a three-hour interactive session at her symposium that not only educates students about complex trauma, but also helps them share resources with the people they’re working with?  

It was an opportunity to share everything I’ve learned in somatic experiencing programs, cognitive behavioral therapy, books, and medical journal articles about trauma. My experiences reflected what many people in online mental health communities I’m active in have also experienced—there were stories about not being taken seriously about health concerns, along with many similarities in how physical symptoms manifested in the form of chronic pain and a variety of medical conditions.  

Key takeaways from my talk at the symposium included the following:  

• It’s not all in your head. Complex trauma is the root cause of many ailments, including asthma, cardiac and digestive conditions, diabetes, chronic pain, and more. A dysregulated autonomic nervous system is at the core of CPTSD.  
• Heart rate variability is out of sync in people living with CPTSD, which results in a range of health problems. (1) 
• Women who experienced sexual abuse as children are 79% likely to develop endometriosis and other pelvic conditions. (2, 3) 
• The perimenopausal transition can last longer and vasomotor symptoms such as hot flashes are more severe for those with CPTSD. As estrogen levels dip, the symptoms of CPTSD worsen. (4) 
• New research shows that, unlike regular memories that are organized and contextualized in the hippocampus, traumatic memories are encoded in the posterior cingulate cortex, which is involved in internally directed thought. It’s ever-present and has a disruptive effect until these memories can be properly processed. (5)  
• A growing number of studies suggest that people with mental illness experience more severe effects from COVID-19. Because the autonomic nervous system is dysregulated, the effects of COVID-19 can cause further damage in the form of dysautonomia, which leads to disruptions in blood pressure and heart rate. An estimated 66% of people with Long COVID developed moderate or severe dysautonomia, and of that 66%, 80% are women. (6) 

Health Equity is a Key Part of the Equation 

When looking at the broader picture of health care, trauma-informed care needs widespread practice. People with chronic conditions often experience bias and long delays in getting diagnoses. Chronic pain causes a neurological reaction that can become traumatic on its own. It takes an average of ten years to be diagnosed with a rare disease, and the average is about the same for endometriosis. This lengthy process can be exhausting and stressful for patients and caregivers alike. Trauma-informed care must be centered in health equity efforts.  

Furthermore, providers should recognize racial, gender, cultural, socioeconomic, and historical biases that may prevent truly listening to people. Racial- and gender-based biases have been embedded in how medicine has been taught and practiced for generations, and while health equity is a trendy topic today, progress has been slow. For example, since women were historically excluded from clinical trials and are still underrepresented in research, women’s healthcare has been limited as well.

What Trauma-Informed Care Looks Like 

• In today’s for-profit-driven healthcare model, time is short and precious. The fragmentation of specialties and primary care can make it difficult to put all the pieces together. In my experience, individual symptoms of CPTSD were identified in one specialty or another over the course of years, but there were few opportunities to take a step back and see how they all connected. It’s important to take a holistic view of someone’s medical history. A constellation of seemingly unrelated symptoms can form a picture of chronic stress and trauma.   
• Transparency and establishing trust are vital to trauma-informed care. When meeting with patients, explain procedures in detail, especially when they involve physical contact. Share as much information as possible to ensure there are no surprises. Empower them in the decision-making process when considering treatment options.  
• Living in survival mode means shutdowns can happen. We freeze up and find our voices gone, which is a function of the dorsal vagal system. In addition, our inner critics are railing at us at crucial moments, like during a medical appointment. To make the most of appointments, encourage patients to keep track of symptoms and patterns and bring their notes and questions for discussion.  

• Muscle-armoring is a painful and chronic pattern of holding tension in the body. It’s a product of being stuck in survival mode and can make some examinations and tests difficult because of the stored tension. Helping patients feel safe by offering compassion and transparency can help.  
• There have been commendable efforts to ask patients about their mental well-being in general appointments. Open-ended questions about personal struggles create a space for conversation and can lead to connections about the relationship between physical and mental health.  
• Trauma-informed care is a need that spans mental illness, chronic pain, rare diseases, and beyond, and that need is vast. In the US, an estimated 50 million adults are experiencing a mental illness. Of the 50.2 million people who live with chronic pain, 24.4 million suffer high-impact pain that limits their ability to work. 133 million Americans have a chronic disease, and between 25 and 30 million Americans live with a rare disease. Trauma-informed care should be required in medical school and other healthcare education programs, and it should be an integral part of the system in which healthcare is practiced.   

My Hope 

I work in healthcare full-time, and my side gig as a patient advocate continues to grow, so I’m immersed in healthcare 24/7 now. If this work helps anyone get diagnosed more quickly than I did, or be taken more seriously than I was; if it puts anyone on a path to recovery or improves their quality of care, directly or indirectly, then I will have fulfilled one of my purposes after being diagnosed with CPTSD: to help people get the care they need and to help all medical professionals understand why trauma-informed care is essential.   

Sources 

1. The Body Keeps Score, Bessel van der Kolk. Penguin Books, 2014.   

2. Early life abuse and risk of endometriosis. Harris, Holly R., Wieser, Freiderich, Vitonis, Allison F., et al. Human Reproduction, Vol. 33, No. 9, pp. 1657–1668. 2018. 

3. Sexual abuse history and pelvic floor disorders in women. Cichowski, Sara B., Dunivan, Gena C., et al. South Med Journal. 2013 Dec.: 106(12): 675–678. Doi: 10.1097/SMJ.0000000000000029. 

4. Associations of intimate partner violence, sexual assault, and posttraumatic stress disorder with menopause symptoms among midlife and older women. Gibson, Carolyn, Huang, Alison. JAMA Internal Medicine, 2019; 179(1):80-87 

5. Neural patterns differentiate traumatic from sad autobiographical memories in PTSD, Ofer Perl, Daniella Schiller, et al. Nature Neuroscience, November 30, 2023 

6. Characterization of autonomic system burden in Long COVID: A global survey of 2,134 adults. Frontiers in Neurology. Oct. 18, 2022. Vol 13–2022. DOI 10.339/fneur.2022.101668. 

Guest Post Disclaimer: Any and all information shared in this guest blog post is intended for educational and informational purposes only. Nothing in this blog post, nor any content on CPTSDfoundation.org, is a supplement for or supersedes the relationship and direction of your medical or mental health providers. Thoughts, ideas, or opinions expressed by the writer of this guest blog post do not necessarily reflect those of CPTSD Foundation. For more information, see our Privacy Policy and Full Disclaimer.

Lee Frost

Lee Frost has worked for nonprofits and marketing agencies focusing on healthcare for the past twelve years. She has a blog about perimenopause and CPTSD called the Sinsemillier, and is working on a trauma-informed education program called the Shapeshifting Crone to help people with chronic illness and disabilities who have experienced medical trauma and gaslighting. Lee grew up in the Boston area and has a master’s from Harvard Extension School and has earned several certifications in trauma-informed care. She lives north of Boston with her husband, where they both love to nerd out on sci-fi and fantasy.

lee.f

By middle school, we’d moved from just outside Boston to a small town in central Massachusetts where I was relentlessly bullied until I left for the exchange program. Every day, I tried to avoid brutal beatings by getting to school early and leaving late, hiding in spaces where they wouldn’t find me. As the only punk-Goth girl in that Lovecraftian, small-town high school, broken by PTSD that I didn’t know I had from childhood, I was an easy target. Sinéad’s rage-filled howls awoke my own anger about the past. It was liberating. Only three years older than me, she was like the renegade sister I never had. 

I came home from my year abroad to find my mom and stepdad facing a failing marriage. The way my stepdad broke my mom’s heart shattered her. I remember him sitting on the front stoop one evening, watching the sunset as he contemplated his future without us. Playing The Lion and the Cobra was like setting off a weapon. Tears abound, especially if my mom was around when “Troy” played. Yet, it was one of my favorite albums because of its therapeutic effect—it was the only way I knew how to express my anguish. 

Decades later, that album continued to be in regular rotation during my rage-and-sorrow ramblings when I wrote my novels using a fountain pen and notebook, getting up to dance and sing along to my favorite tunes well into the night. I was living in functional freeze—a product of a buried childhood that refused to be ignored. My nervous system still hid in the kitchen cabinet like I did when I was four, trying to avoid being found by my abusers. I struggled with depersonalization and derealization without knowing what was happening. I had no name for it. I just figured it was better to keep my mouth shut.   

Life eventually got better. Ten years ago, I married my soul mate and quit a soul-stifling job that was becoming like high school all over again. I began to heal without being aware of it. Things were safe, so the trauma felt comfortable in creeping out of its restless grave. My husband and I found a cool place to live on Boston’s outer edges and I found a job that let me be creative and grow my career. Then perimenopause kicked in. The HPA axis (hypothalamic-pituitary-adrenal) becomes dysregulated and is responsible for what are known as vasomotor symptoms: hot flashes, heart palpitations, anxiety, and night sweats. The HPA axis is also dysregulated because of CPTSD, so it was a double whammy. It was only a matter of time before the dam broke.  

“I am not like I was before I thought that nothing could change me” 

The combination of being in a safe environment and perimenopause set up the perfect storm. My breakdown occurred in the spring of 2021, just as chronic pain from fibroid tumors and endometriosis was taking over my life. After reviewing the results of the Adverse Childhood Experience (ACE) and PTSD questionnaires, I was diagnosed with CPTSD in the fall. Hospital visits and therapy became the focus. After being mostly bedridden for more than a year, I finally had the much-needed surgery. But it came at a high cost in the form of medical trauma, which I wrote about in another blog post on this site. A near-fatal adverse reaction from a common pain med sent me to the ER. I happened to fall into that tiny, less-than-one percent category where it was highly toxic. As my nervous system and brain stem were shutting down, an ER doc, upon learning I live with CPTSD, dismissed me as having a panic attack. It’s a new trauma that I’m still coping with, but the outcome provided an opportunity that astonishes me to this day.  

Weeks after the CPTSD Foundation published my blog on medical trauma, I was contacted by an instructor from a medical school with an offer: she had shared my blog with her class, and they wanted to work with me on creating an educational module to help future healthcare professionals understand how to work with patients living with complex trauma. The instructor operates a nonprofit dedicated to helping victims of human trafficking, and the students’ training includes working with human trafficking victims who are incarcerated. We’ve been working together for nearly a year now and the project continues to grow.  

My advocacy efforts also led me to the WHO’s Patients for Patient Safety Committee, where I recently gave a presentation on AI and the online patient journey as it relates to mental health. I outlined how companies and advertisers work to be found, from the moment a person types in symptoms they’re trying to figure to out the post-diagnosis search for finding resources for treatment. Keywords drive what appears on the first page of search engine results. Knowing that 75% of people don’t click past the first page, marketers need to capture that spot, and AI has been assisting in creating ads that appear in those first search results for some time now. Often, ads promise quick cures. Mental health services are increasingly popular and the competition is tough. In addition to showing how people look for help online, I shared how mental health services use AI, sometimes without people knowing. The presentation made more of an impact than I anticipated, and now I’m scheduled to give it again to other groups.  

I’m honored to have these opportunities. When I first shared my CPTSD story, I worried about going public with it. I had no idea where it was going to go. But if this work helps anyone struggling with CPTSD, I’ll be grateful. I attribute these efforts in part to Sinéad, my patron saint of rage, because she helped me find my voice.  

“I have not seen freedom before 
And I did not expect to 
Don’t let me forget, now I’m here”  

I didn’t know anything about Sinéad O’Connor’s personal life until I read her memoir, Rememberings: Scenes from My Complicated Life, while I was recovering from surgery last year. The book had a powerful impact on me. It helped me heal. Although our backgrounds are very different, there were enough similarities in essence. I related to her state of mind. I inherited plenty of generational trauma from my Irish heritage and her account of life in Ireland gave me some deeper insights into a history that I’m only just learning more about now. I was following her on Twitter when her son Shane committed suicide and she was tweeting from the hospital where she was staying after being tempted by the idea of suicide herself. And it wasn’t the first time, as she explained in her book. Her mourning, her wild humor, and her snark as she addressed any haters on Twitter resonated in my soul.  

The news of Sinéad O’Connor’s death breaks my heart. Many of us who struggle with mental illness know those dark spaces where death seems to offer peace from the chaos we find here in the world. Her music guided me and so many of my fellow GenX friends through difficult times—times we faced with a maelstrom of emotion. We raged, we sang, and we tried our best to hide our pain throughout all of it.  

Airím uaim thú, mo deirfiúr álainn. Thank you for sharing your voice with us. I’ll always carry your songs in my heart.   

“Now I feel so different” 

Guest Post Disclaimer: Any and all information shared in this guest blog post is intended for educational and informational purposes only. Nothing in this blog post, nor any content on CPTSDfoundation.org, is a supplement for or supersedes the relationship and direction of your medical or mental health providers. Thoughts, ideas, or opinions expressed by the writer of this guest blog post do not necessarily reflect those of CPTSD Foundation. For more information, see our Privacy Policy and Full Disclaimer.

Lee Frost

Lee Frost has worked for nonprofits and marketing agencies focusing on healthcare for the past twelve years. She has a blog about perimenopause and CPTSD called the Sinsemillier, and is working on a trauma-informed education program called the Shapeshifting Crone to help people with chronic illness and disabilities who have experienced medical trauma and gaslighting. Lee grew up in the Boston area and has a master’s from Harvard Extension School and has earned several certifications in trauma-informed care. She lives north of Boston with her husband, where they both love to nerd out on sci-fi and fantasy.

lee.f

Cognitive behavioral therapy was helpful for a while, but addressing the physical nature of complex trauma was more important. I have a long history of medical problems (which I wrote about in another post), and I struggle with muscle armoring and holding my breath all the time. I’ve been stuck in freeze mode for decades. I signed up for several free online virtual events about complex trauma and was intrigued by polyvagal theory and somatic experiencing.

It was the first step in finding my authentic self. Several programs offered free sessions and resources, and it was a great way to see if something resonated with me before spending any money. One program stood out and I signed up. It was not therapy; it was an education in the biology of stress and understanding the body’s long-term response to trauma. For three months, each week was filled with a combination of live online lessons, Q&A sessions, videos featuring gentle bodywork, and a trove of downloads that included all of the recorded live sessions and audio neurosensory exercises. The neurosensory exercises are gentle meditations where you’re guided in listening to your body’s signals. The more attuned you become, the easier it is to befriend your nervous system, or so the idea goes. It turned out to be more difficult than I expected.

All I had to do was lie on my back and tune in. It was triggering the first few times. I shook, I cried and was incredibly disappointed in myself for not being able to quietly listen to what my body was trying to tell me. The good news is that once you sign up, you’re a member for life and can participate in the program whenever it’s running and play the downloads when it’s not, so there’s plenty of time to practice. They’re good at managing expectations. They say it can take at least a couple of years to fully integrate these practices into everyday life. I’m one year in and have made much more progress than I would’ve guessed when I started.

Instead of forcing my shoulders down when I suddenly realize I’ve been sitting there all tensed up, I acknowledge the sensation of the stress, remind myself to breathe, and over time it just happens less. I don’t hold my breath as much as I used to. When it dawns on me that my hips ache, I do a few exercises from somatic therapy and gradually, I’ve become more accustomed to keeping my posture less rigid. My husband’s a massage therapist and had noted lately that it doesn’t feel like massaging a stone statue—that was a significant improvement. Even though it’s a work in progress, I feel worlds better. Fatigue is less of a problem and chronic pain is diminishing. Mild workouts are starting to build a bit of strength. At times it feels like I need a brain to manage my brain, monitor everything I do and figure out every self-sabotaging symptom that started out as a means of survival.

What surprised me about somatic therapy was how it’s about learning little gestures and intuitive behaviors that were missing when I was a child. Affection was a rarity in my family. As I learned how to soothe myself during a flashback, I realized one of the gestures was something my great-grandmother did when I was very small—she’d stroke around my forehead and cheekbones, down my chin, and up the other side. This soothing technique was the missing link. Depersonalization and derealization are twin phantoms that haunted me throughout childhood with a great deal of intensity. Most physical contact was bad, so I spent much of my time trying not to make contact with the world. Dissociation was a welcome respite from reality. To be honest, even now there are times when I don’t want to be in this reality. Pandemics, wars, massive gaps in equity, I mean, in today’s very online world, you can’t escape nerve-wracking headlines. And yet, the path to healing lengthens before me, offering a serene space where I can get to know all the parts of me that fragmented during a chaotic childhood. The authentic self is emerging.

Over the past few months, I’ve discarded a lot of old stuff I held onto out of a sense of obligation. As our budget allows, I’m changing my wardrobe, hair color, and stuff around the house, and finding out who I really am. Journaling helps. I’m finding my voice. I recorded my first, nervous podcast even though I hate my voice. I speak up more at work and am sorting through all the things I used to do—is this what I really want? Is this hobby mine, or did I do it because so and so told me I should? Every aspect is examined, sorted, and either cast aside or reintegrated into my life.

Sometimes an immense sadness hits because this didn’t happen until I was in my fifties, however, I see a new road ahead. Joy, pleasure, and gratitude are new words to my vocabulary. I’m still in the discovery phase of identifying what my CPTSD is—all the little behaviors, fiascos of the past, and states of mind that led to the diagnosis. It’s an accumulation of symptoms that can go unnoticed for decades. You can just lead yourself to believe that this is the way life is. While I’m still reckoning with my past and my identity, a new strength has emerged. The inner critic doesn’t assault my intuition with the same ferocity as it used to. I’m finally learning what it means to feel comfortable in my own skin.

Guest Post Disclaimer: Any and all information shared in this guest blog post is intended for educational and informational purposes only. Nothing in this blog post, nor any content on CPTSDfoundation.org, is a supplement for or supersedes the relationship and direction of your medical or mental health providers. Thoughts, ideas, or opinions expressed by the writer of this guest blog do not necessarily reflect those of CPTSD Foundation. For more information, see our Privacy Policy and Full Disclaimer.

Lee Frost

Lee Frost has worked for nonprofits and marketing agencies focusing on healthcare for the past twelve years. She has a blog about perimenopause and CPTSD called the Sinsemillier, and is working on a trauma-informed education program called the Shapeshifting Crone to help people with chronic illness and disabilities who have experienced medical trauma and gaslighting. Lee grew up in the Boston area and has a master’s from Harvard Extension School and has earned several certifications in trauma-informed care. She lives north of Boston with her husband, where they both love to nerd out on sci-fi and fantasy.

lee.f

My CPTSD is based on traumas that started in early childhood. I have no conscious memory of “normal.” My traumas are old, familiar enemies. I know them well. They’ve become characters in my mind to better organize and study them. Mrs. Rochester (named after the lady who was kept in the attic (in Charlotte Brontë’s Jane Eyre) is my daily, nagging inner critic who tells me I do everything wrong. A high-handed narcissist is based on someone in my life who degraded me with insults as though talking about the weather. A brewing medical problem came to the forefront in 2021, and I’m now navigating a whole new layer of trauma. I’ve been plagued with medical problems forever, but this was a whole new level.

I’ve always had pelvic problems, but they were dismissed as insignificant, despite the pain I reported. Turns out the situation was much worse, and there is a very strong connection between child sexual abuse and gynecological problems, such as 79% of survivors who endured severe physical and sexual abuse experiencing endometriosis. The study suggests that it’s dose-related, meaning the severity of the events can be correlated to the intensity of chronic pain someone experiences.(1) Pelvic floor disorders can include fibroid tumors and other chronic problems.(2) Another study found that women who experienced pelvic pain were more likely to use dissociation as a coping mechanism.(3) Dissociation is a common feature of CPTSD.

The worst phase of chronic pelvic pain began more than a year ago, around the time I was diagnosed with CPTSD. An initial visit to my primary care doc led to some concern, and what followed was a saga of delayed appointments due COVID causing low staffing levels are hospitals, a near-fatal adverse event to a common pain med, and because of my unfortunate history of adverse reactions, I was sent home with no pain meds after surgery.

The first ob-gyn marched into the exam room and was strangely aggressive as she barely took the time to glance over her shoulder as she went down her list of questions. When I said I was recently diagnosed with CPTSD, she demanded to know why. She wanted me to explain what had happened. She wanted details. These were things I couldn’t discuss without having a complete meltdown. After an ultrasound and a biopsy, she decreed there would be no surgery. The tumors were small, and I “couldn’t possibly feel pain.” I paid more attention to reviews about physicians before I went for a second opinion. I had the good fortune of finding a compassionate and trauma-informed ob-gyn who recommended a hysterectomy. Pain management was essential, she said because the muscles and facia were contorted and spasming with the stress. She prescribed a common pain med.

It helped at first, but it felt heavy, so I only took it when things were really bad. Then one night I got up from bed and couldn’t walk right. Like staggering drunk, only worse. I collapsed on the floor and my arms and legs twitched as my body went numb. It felt as though the back of my head was being squeezed. My husband and I were convinced it was a heart attack or stroke, and off to the ER we rushed. The attending physician dismissed it as a panic attack and told me to go home and ride it out. Had I followed his advice, I would’ve been riding it out in a hearse not too long after. I wasn’t getting better, and we made two more trips to the ER that week. Ever the ambitious, high-functioning perfectionist, I still showed up for work the following morning after spending all night stretched out on a gurney having one test after another. (I work from home, thankfully, so it’s a short commute.) It was my mom, a retired EEG tech, who made the connection between the pain med and the symptoms I was experiencing. I stopped taking it and she hauled my tail up to her home in rural Maine to feed me (I lost a lot of weight way too fast) and keep me isolated from any chance of catching COVID. I spent a lot of time sitting outside watching foxes, seals, eagles, and other wildlife as they went about their routines.

The scariest part of the adverse reaction, other than nearly kicking the bucket, was the psychological effects of that pain medication when it becomes toxic to the system. My usual nightmares were infused with hallucinations. I couldn’t shake the terror, even when awake. According to the prescription information, it was a short slide to delusions and psychosis as the central nervous system shuts down. The metaphor became a vivid night terror. I was trapped in a vehicle on Pluto’s surface, and thick ice was encasing it, obscuring my view and leaving me sealed into a dark, metal tomb. The sun was a distant dot of light. A would-be rescuer slammed a shovel into the ice but wasn’t able to get to me. When I awoke, my body was ice-cold and a song that played at my brother’s funeral was stuck in my head. I knew I was dying. Those night terrors are representative of fresh new triggers that I have yet to recognize until I’ve already fallen into the trap. They’re full-body flashbacks that set me back for days. A tension headache after a long day at work, a nerve twinge because of my constant muscle armoring, taking a vitamin, and worrying if it’s going to do something horrible, all these things now raise alarm bells that dig deep physically. And after a particularly intense somatic therapy session, a new realization dawned that forced me to confront, and release, a part of my past that I was terrified to face.

Sexual assault was the scourge of my early childhood. It happened repeatedly before it was discovered and stopped. My sexuality remains largely unexplored. I’ve made peace with that, but it brings to mind two specific traumas that led me here. After being raped around the age of five, I remember saying something about having a baby. My attackers laughed. One told me that because I was so small, that a fetus would die and stay in my body. I believed it for years. Then a former stepfather (there are a few) routinely berated me for my lack of sexuality, cruelly mocking me for not being as adventurous as he was. He and his girlfriend made fun of me all the time, saying that they’d gladly accept me if I were a lesbian, but couldn’t deal with me “being nothing.” I had told him about what had happened to me many years ago, but I was met with hostile disbelief. And this year, at the age of 52, I “delivered” tumors via a hysterectomy that weighed as much as a baby. Like a scene out of a horror film, the tumor-baby pressed against ligaments covered in endometriosis. That eternal five-year-old inner child covered in welts and bruises, confused and ashamed, cried out in terror at the realization the attackers’ old curse had manifested. The tumors were big enough to create a baby bump. I looked like I was starting to show. Their assaults—physical and emotional—led to real-world medical problems that caused intense pain for years. Medical gaslighting and trauma added to the burden. It’s not all in your head. You can’t simply “get over it,” no matter how frustrated or angry your gaslighters become about “your behavior.”

I was diagnosed with CPTSD a year ago. Cognitive behavior therapy helped for a while, but ultimately I’ve made the most progress with somatic experiencing. It can be scary at times when old traumas bubble up to the surface, but then they begin to dissipate. I feel lighter and have fewer intrusive thoughts. Physically, I have a more comfortable range of motion. It’s also helping me recover from the “pain posture” that so many people with chronic pain are familiar with. Shadow work helped me recognize how my inner child slammed the brakes on areas of my life that she wanted no part of, and because she was relentlessly screaming into the void, I wasn’t going to heal until I faced her and listened. Truly listened, acknowledged, and comforted her. Once I’m a bit more comfortable with somatic experiencing, I’m hoping to give rolfing a try. It’s a type of bodywork/massage that can help with releasing old stress.

There are plenty of days when I feel down and fatigued, but I’m finally getting a sense of what life without chronic pain is going to be like. I’m an eternal student and intend to keep delving into the research and all the ways to heal my body, mind, and spirit.

My question to the CPTSD community is this: When (or even do you) disclose that you have CPTSD in medical settings? If so, what has the reaction been like? What would you recommend to others based on your experience?

Sources: 

1. Early life abuse and risk of endometriosis. Harris, Holly R., Wieser, Freiderich, Vitonis, Allison F., et al. Human Reproduction, Vol. 33, No. 9, pp. 1657–1668. 2018.
2. Sexual abuse history and pelvic floor disorders in women. Cichowski, Sara B., Dunivan, Gena C., et al. South Med Journal. 2013 Dec.: 106(12): 675–678. Doi: 10.1097/SMJ.0000000000000029.
3. Dissociation in women with chronic pelvic pain. Walker, E.A., Katon W.J., et al. American Journal of Psychiatry. 1992, April: 149(4):534–7. Doi: 10.1176/ajp.149.4.534.

Guest Post Disclaimer: Any and all information shared in this guest blog post is intended for educational and informational purposes only. Nothing in this blog post, nor any content on CPTSDfoundation.org, is a supplement for or supersedes the relationship and direction of your medical or mental health providers. Thoughts, ideas, or opinions expressed by the writer of this guest blog do not necessarily reflect those of CPTSD Foundation. For more information, see our Privacy Policy and Full Disclaimer.

Lee Frost

Lee Frost has worked for nonprofits and marketing agencies focusing on healthcare for the past twelve years. She has a blog about perimenopause and CPTSD called the Sinsemillier, and is working on a trauma-informed education program called the Shapeshifting Crone to help people with chronic illness and disabilities who have experienced medical trauma and gaslighting. Lee grew up in the Boston area and has a master’s from Harvard Extension School and has earned several certifications in trauma-informed care. She lives north of Boston with her husband, where they both love to nerd out on sci-fi and fantasy.

lee.f

Ever have one of those moments when a breakthrough hits you so hard that you’re absolutely stunned that you never saw it before? I was only diagnosed with CPTSD last year, so this has been happening a lot. The connection that shook me hard pointed to a core trauma from early childhood, but the trigger seemed so innocuous, and I was so good at avoidance, that the issue never dawned on me.  

I’ve always loved art. I like to draw and paint, but I don’t spend much time with it, as much as I’d like to. Over the years, sketchbooks were depleted of paper as I destroyed anything I didn’t like. Too many mistakes on a page resulted in it being torn out. Even a single mistake, if egregious enough. Years passed between my hesitant art phases. Yet a collection of colored pencils, nice ink pens, and other supplies grew.  

A few years ago, a coworker shared a link to The Sketchbook Project by the Brooklyn Art Library on a general message board. For a fee, they’ll send you a sketchbook to be filled out as you like, and they digitize it and make it available online. It’s open to all ages and skill levels. The books themselves are sent around the country in batches and appear in various art museums and exhibitions. I even had the pleasure of visiting my own sketchbook during its brief stay at the ICA in Boston. But it wasn’t easy to do, and I didn’t understand why. Some pictures didn’t turn out as imagined and I despaired, and on multiple occasions, I was tempted to toss the whole thing in the trash bin. I felt overwhelmed and panicky. I was three pages away from finishing it when I held it over the open bin, but my husband stopped me and convinced me to keep at it. I hadn’t been diagnosed with CPTSD yet, but the dam was close to breaking.  

Fast forward to last fall, shortly after I found myself reeling from a series of appointments, starting with the employee assistance program available through work. With little knowledge about therapy, I searched far and wide for resources. Along the way, a one-off virtual art therapy event popped up somewhere on social media. The organizers sent the supplies in the mail. Crayons were included in the package. Creeping anxiety haunted me. While I did enjoy the event, the childish drawing that I produced filled me with fear. I dissociated for quite a while after that—that old thousand-yard stare because a terrible epiphany arrived.  

I attributed my avoidance of art to my stepbrother, who was immensely talented. From childhood on, he was obsessed with drawing. A devastating accident took him from us when we were both in our early twenties. He had plans to publish his own graphic novel series: he was the artist and I was the writer, and we had a lifetime of projects planned. I reasoned that my grief was enough to make me avoid art. After all, it was his territory, and I couldn’t help but compare my childish style to the masterful way he had of drawing elvish lords and alluring vampiric seducers. But the truth was scarier to admit to and confront.  

I was three when my mom married a much older man who had several children from a previous marriage. His teenage sons became my abusers, torturers who delighted in thinking up new ways to terrorize me. One of them developed a routine where he’d lay out a coloring book and crayons and he made marks to tally up each time I went outside of the lines. I still remember how the sunlight came through the window on the table where we sat. After the session, he’d strike me for each mark on the paper. Sexual abuse was usually part of the punishment. My body was covered in bruises and welts. That marriage was over long ago (and not at all connected with my stepbrother the artist), but the memories continue to burn my spirit.  

This memory never faded, but the connection with my avoidance of art didn’t seem obvious before I had a crisis and started therapy. As awestruck as this revelation made me, I also felt stupid. How could I have not put those pieces together before? Like a jigsaw puzzle, the pieces of my past are all shaken up in my mind. The impulsive perfectionism and shame that forced me to destroy the evidence of my mistakes, as it were, by tearing imperfect art out of my sketchbooks became crystal clear. I grieved for the inner child who wanted to call herself an artist. An emotional riptide controlled my mind for days. But then the perimenopausal bog witch within had enough. And she was mad. “Why shouldn’t I do art when I want?” she demanded. Many of the resources I’ve turned to since being diagnosed recommend art therapy. I enjoy it immensely whenever I can successfully banish the anxiety. One of the books I’ve been working my way through has regular drawing assignments. The insights gained have been tremendously helpful, but I have to pace myself sometimes. Exposure therapy became part of my regimen for something that is typically found to be soothing for so many others with CPTSD. I don’t sit down to draw if I’m tired or not feeling well. If I feel myself get frustrated, I stop. I let myself cry. I scribble angrily and draw exclusively outside of the lines. I create artistic chaos while listening to loud music if it damn well suits me. Paint specks on the table are now a badge of pride. I will not let the past win.  

Guest Post Disclaimer: Any and all information shared in this guest blog post is intended for educational and informational purposes only. Nothing in this blog post, nor any content on CPTSDfoundation.org, is a supplement for or supersedes the relationship and direction of your medical or mental health providers. Thoughts, ideas, or opinions expressed by the writer of this guest blog do not necessarily reflect those of CPTSD Foundation. For more information, see our Privacy Policy and Full Disclaimer.

Lee Frost

Lee Frost has worked for nonprofits and marketing agencies focusing on healthcare for the past twelve years. She has a blog about perimenopause and CPTSD called the Sinsemillier, and is working on a trauma-informed education program called the Shapeshifting Crone to help people with chronic illness and disabilities who have experienced medical trauma and gaslighting. Lee grew up in the Boston area and has a master’s from Harvard Extension School and has earned several certifications in trauma-informed care. She lives north of Boston with her husband, where they both love to nerd out on sci-fi and fantasy.

lee.f

As I sit here with several benign tumors that are causing constant pain, I realize how chronic medical problems have followed me throughout life. I was always the sickly, hand-shy kid. Pain and odd ailments punctuate every major inflection point, like a divorce or career change. I land in urgent care or the emergency room nearly annually, or at best, every other year. Tonsillitis three times in my forties. Cysts and fibroids abound.  A couple of cancer scares. Before I was diagnosed with CPTSD, I didn’t understand how mental illness can affect a body so deeply, even as it was happening to me.  In 2005, an orthopedic surgeon and several physical therapists grew frustrated because I couldn’t relax my leg. One flat-out yelled at me after knee surgery because I couldn’t bend the way I was instructed to. My muscles have been so tense for so long that I don’t know how to relax. Now in my 50s, the muscle pain is a persistent bother. It was during a therapy session that the connection was made: a lost child frozen in time.

I’ve been stuck in freeze mode for decades. I’m still that four-year-old child who ran into the hallway begging for help after overhearing what my abusers had planned for me, only to be met with brutality. I made a lifestyle of hiding after that. And I never stopped.

Even in plain sight, I tuck myself into shadowy corners and back rows, wearing oversized clothes. Back to the wall and an exit nearby for a stealthy escape. Not being noticed is my superpower. After diagnosis, the CPTSD Foundation was one of the first sites I found. An article on Lost Child Syndrome struck home, particularly with the line, “The first belief is that they have the power to hurt others around them by taking up space in the world.” It was as though someone held up a mirror and it shook me to the core. I was “safe,” but at what cost? It was the opposite of FOMO. Rather than being afraid of missing out, I worried about having to be there. It wasn’t a social life; it was an asocial life.

The pain of hiding, frozen in time, accumulates. Surrounded by a legion of squishy toys, I squeeeeeze the ever-living life out of them during therapy sessions. My legs tangle around the chair legs as my arms stretch taut across the armrests, with my hands clutching as though I’m on a ride at a theme park with a reputation for being unsafe. Therapy has given me an understanding of how I live in this world and I now have tools to help me cope better but addressing the physical aspect has become a priority.

A New Sensation

I enrolled in a somatic therapy program that uses a combination of techniques like polyvagal therapy and the Feldenkrais Method. Yoga has been a favorite for years, so I expected to dive right in. The result? The first attempt was scarier than anticipated. Why? Imagine dangling off the edge of a cliff for years. Someone offers a hand to pull you up. You’ve been hanging off this precipice most of your life—it’s become your reality. The idea of actual safety doesn’t register. Neither does the idea of trusting the person offering help. Persistence is key.

It took me several tries to make it through the first somatic therapy exercise, which simply consisted of laying down and concentrating on the sensations in my body. It triggered me. I was shocked and saddened, worried that I might not make it through the program. It took several tries over days. Each time I started to cry, but then, finally, I relaxed. Really relaxed. If that orthopedic surgeon could see me now!

The aftereffects were amazing. It was similar to how you feel after a massage. I felt lighter and there was a tingling sensation in my muscles; the tension freed up. I was a bit light-headed but in a pleasant way. While I have a long way to go in these programs that focus on bodywork, I’m already seeing the benefits, and I look forward to putting a lot of effort into them. My advice:

• Before signing up for anything, sample what you can. Some workers in the space make a selection of sessions available for free on their sites or their channels on YouTube so you can try it for yourself.
• Chat with people (says the girl who never wanted to talk to anyone)! If you have access to online or in-person groups, ask what the experience was like for others. Was it worth the cost?
• Be open-minded, but do your research. Some methods seem “out there” and may feel silly at times, but when you find something effective, it’s a revelation. Check out reviews and read up on the qualifications of the people selling the programs. Are they making claims that are over the top?
• Give yourself time! Pace yourself, be patient and compassionate with yourself, and have a line to whatever support you can if you need help.

After a lifetime of feeling disconnected from the world, it can feel unsettling and terrifying to open up. Hypervigilance is exhausting and the physical effects are real. It’s never too late to start listening to your body and guide it through the healing process.

Guest Post Disclaimer: Any and all information shared in this guest blog post is intended for educational and informational purposes only. Nothing in this blog post, nor any content on CPTSDfoundation.org, is a supplement for or supersedes the relationship and direction of your medical or mental health providers. Thoughts, ideas, or opinions expressed by the writer of this guest blog do not necessarily reflect those of CPTSD Foundation. For more information, see our Privacy Policy and Full Disclaimer.

Lee Frost

Lee Frost has worked for nonprofits and marketing agencies focusing on healthcare for the past twelve years. She has a blog about perimenopause and CPTSD called the Sinsemillier, and is working on a trauma-informed education program called the Shapeshifting Crone to help people with chronic illness and disabilities who have experienced medical trauma and gaslighting. Lee grew up in the Boston area and has a master’s from Harvard Extension School and has earned several certifications in trauma-informed care. She lives north of Boston with her husband, where they both love to nerd out on sci-fi and fantasy.

lee.f

When perimenopause hit in my mid-40s, so did a resurgence of CPTSD symptoms, but I didn’t understand what was happening, so I did my best to ignore all of it by self-medicating. Throughout my childhood, I was told to “learn to live with it.” Perhaps, if I simply stopped thinking about the bad things, memories of them would fade away. Some specificities of those old traumas faded and resided just under the surface, but the consequences of ignoring it became so embedded that I believed I had “learned to live with it.” It was the ultimate act of deception of my mind against who I hoped to become as a person. For years I wondered with indignation why I didn’t get certain promotions. Some je ne sais quois was missing. Turns out it was diminished executive function and a fear response that didn’t know when to stop.

Then came a series of revelations.

I’m a Gen Xer, meaning I was feral for much of my youth, and especially so because of the violence I experienced. Some parents warned their children away from me because I “came from a broken home.” Subjects like divorce and child abuse were spoken of in hushed tones, and my wild behavior offered plenty of cause for rumor. In an era without seatbelts and where students and teachers alike were allowed to smoke on school grounds, it was a very different time. Where I grew up, kids had to be tough, and there was no way I was going to show weakness. Add to that the fact that I had to fend off the grooming efforts of some predators in my family’s social circle, and I retreated into a stronghold of solitude. Out there in the world, I was just going through the motions.

A Full Reckoning with CPTSD

At one point, I realized my behavioral compass was off after describing what I thought was a funny Gen X story about a series of death-defying escapades in my teens. A friend looked at me with an expression of horror and sympathy. “Honey, what you’re describing is self-harm, whether intentional or passive. Have you ever addressed old trauma in your life?”

Imagine my surprise when I later created a TikTok account for my job as a digital strategist. The assignment was to determine whether it would be a good channel for advertising for the organization I work for, which is in the healthcare industry. But what I found were lots of people ranging from Gen Z to millennials talking very relatable and often eloquently about their trauma. It became a crash course in the recognition of symptoms and coping mechanisms. They had terminology and concepts down. They described my own behaviors so well I spent more time crying over my phone than doing the market research I was supposed to be focused on.

I realized I was trapped in a bleak abyss. I quit drinking this summer and began to address the underlying issue, and it’s been an arduous but rewarding process. As I read books about CPTSD, I feel as though I’m reading biographies that I didn’t know had been written about me. Things I didn’t dare talk about leapt off the page and struck me in the heart like a poisoned arrow. You mean…other people do this too? The pain was almost too much to bear. My muscles often hurt from being tensed up and I have a tendency to hold my breath a lot. It’s not frequent, but I have inadvertently caused myself to faint because of it. My sudden self-awareness of this intense internal struggle could no longer be ignored.

What hurts the most now is calculating how long I’ve been living like this. The abuse started when I was four years old. The very beginnings of my conscious memory is based in despicable violence, and it pains me to think of all the things I never experienced due to not being able to address my CPTSD. With each layer of new trauma, I withdrew further and further until I hit that breaking point, courtesy of my shifting hormones. I am grateful for the help I’m receiving now, as bittersweet as the experience is. I’m finally in therapy and have a wonderfully supportive husband now. I’ve grown much closer to the family that remains in my life. Each day, as mindfully as I can, I make progress, and can finally see a brighter future where I can better manage the old ghosts in a very crowded haunted house.

Guest Post Disclaimer: Any and all information shared in this guest blog post is intended for educational and informational purposes only. Nothing in this blog post, nor any content on CPTSDfoundation.org, is a supplement for or supersedes the relationship and direction of your medical or mental health providers. Thoughts, ideas, or opinions expressed by the writer of this guest blog do not necessarily reflect those of CPTSD Foundation. For more information, see our Privacy Policy and Full Disclaimer.

Lee Frost

Lee Frost has worked for nonprofits and marketing agencies focusing on healthcare for the past twelve years. She has a blog about perimenopause and CPTSD called the Sinsemillier, and is working on a trauma-informed education program called the Shapeshifting Crone to help people with chronic illness and disabilities who have experienced medical trauma and gaslighting. Lee grew up in the Boston area and has a master’s from Harvard Extension School and has earned several certifications in trauma-informed care. She lives north of Boston with her husband, where they both love to nerd out on sci-fi and fantasy.

lee.f

In an article published in 2016, low estrogen levels were associated with symptoms of anxiety and depression. This can occur during all phases: premenstrual, post-partum, perimenopausal, and postmenopausal periods. Specifically, women with low levels of estradiol had heightened fear responses and more intrusive thoughts days after being shown violent film clips. The phasic nature of the hormonal cycle may actually make women more vulnerable to PTSD. The hypothalamus and amygdala each have many estrogen receptors, and the hypothalamus is part of the hypothalamic-pituitary-adrenal (HPA) axis, which is also associated with the vasomotor symptoms of perimenopause, i.e., hot flashes, night sweats, heart palpitations, and sleep disturbances.

The HPA axis itself is thought to be a potential underpinning for PTSD. Trauma occurring in early childhood may inhibit the development of the oxytocin system, which works with the HPA axis to regulate stress responses.(2) Lower levels of cerebrospinal fluid oxytocin concentrations were noted in women who experienced abuse as children. This means that with less oxytocin, the stress hormone cortisol isn’t regulated, and the fear persists. This is associated with the fight and flight responses. Both oxytocin and cortisol seem to be dysregulated as a result of trauma. This may also be a factor in the chronic health conditions that are associated with PTSD.

While the precise mechanism correlating estrogen and the symptoms of PTSD isn’t yet known, studies suggest that estrogen may help alleviate them. In a study comparing sexual assault victims, those who took an emergency contraceptive containing estrogen reported significantly lower symptoms of PTSD six months after the incident.(1) Hormone replacement therapy is a common option for those experiencing perimenopause, and estrogen may be a beneficial option for people who live with complex PTSD as well, and hopefully, future studies will reveal more about this connection.

Further research has shown that adverse childhood experiences (ACEs) may put women at higher risk of depression during perimenopause. This too may be related to how trauma impacts the body early in life and the resulting dysregulation of the oxytocin system. A 2017 study about ACEs as a factor for depression during perimenopause reported that of nearly 300 participants, 60.5% experienced at least one adverse childhood event. In this group, 20.7% were diagnosed with major depressive disorder during perimenopause and 22.4% were diagnosed with it before perimenopause started.(3)

PTSD can have an impact on the menopausal transition. Because we already may have sleep disorders because of PTSD, the severity can increase. The severity of menopausal symptoms hasn’t been studied in-depth, but the evidence we have does suggest a correlation. In a study of 1,148 women, 1 in 5 had experienced intimate partner violence and/or sexual assault, and 1 in 4 had PTSD.(4) Difficulty sleeping was the most frequent problem, followed by hot flashes and night sweats.

In my personal experience, complex PTSD has done some of its worst to me during perimenopause. It was the reason I finally sought help and ultimately got my diagnosis. I thought I had done a good job out trying to outrun it for decades. I had fooled myself well, but over the past year, as perimenopause entered a particularly difficult phase, my mental health grew increasingly worse. I’m still in the process of figuring out the best way to manage it all, but this knowledge has helped me considerably. I’m better at predicting when my inner critic may be louder and more vicious. My days spent lost in a fog make more sense. When I’m especially adrift, it often corresponds to something happening in my hormonal cycle. I find it comforting to pore over research to gain a better understanding of complex PTSD. A nerd by nature, reporting back on what the science says is how I best communicate what’s happening when speaking with friends and family. Understanding the link between the menopausal transition and PTSD was a starting point for my recovery, and I’m grateful to have found my way to this path of healing.

Sources:

1. Estrogen and extinction of fear memories: implications for post-traumatic stress disorder treatment. Glover, Ebony, Jovanovic, Tanja. Biol Psychiatry, August 2015: 78(3): 178–185: doi: 10.1016).
2. Exploring the mutual regulation between oxytocin and cortisol as a marker of resilience. Li, Yang, Hassett, Afton. Arch Psychiatric Nursing, April 2019: 33(2): 164–173: doi: 10.1016).
3. Adverse childhood experiences and risk for first-episode major depression during the menopause transition. Epperson, C. Neill, Sammel, Mary. Journal of Clinical Psychiatry, March 2017, 78(3):298–307.
4. Associations of intimate partner violence, sexual assault, and posttraumatic stress disorder with menopause symptoms among midlife and older women. Gibson, Carolyn, Huang, Alison. JAMA Internal Medicine, 2019; 179(1):80-87.

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Lee Frost

Lee Frost has worked for nonprofits and marketing agencies focusing on healthcare for the past twelve years. She has a blog about perimenopause and CPTSD called the Sinsemillier, and is working on a trauma-informed education program called the Shapeshifting Crone to help people with chronic illness and disabilities who have experienced medical trauma and gaslighting. Lee grew up in the Boston area and has a master’s from Harvard Extension School and has earned several certifications in trauma-informed care. She lives north of Boston with her husband, where they both love to nerd out on sci-fi and fantasy.

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