Going about daily life living with CPTSD is a herculean feat in and of itself

Both external and internal triggers can spark memories, emotional volatility, and mistrust. Feeling secure and grounded in the present moment can feel fleeting. Chronic illness, even a cold or flu, can make everything worse. Illness can compound CPTSD symptoms. (Boscarino, 2004)  

The physical and emotional pain entwined in CPTSD and physical illness can feel impossible to articulate. It, the pain, can trigger emotional flashbacks – feelings of vulnerability, a loss of agency, a loss of control. You might feel betrayed by your body. Angry. Hopeless.

Being high-achieving is a tempting hamster wheel because it works, until it doesn’t

Survivors may even be stuck in a catch-22. Being sick can be triggering, and rest can be triggering. Stillness isn’t always comfortable. Exhaustion can feel unsafe. For some, being busy, busy, busy can be a defense mechanism. It makes sense. If you keep running, you never have time to sit with memories. Except that’s not how life works, or how bodies work. Being high-achieving is a tempting hamster wheel because it works, until it doesn’t. Being ill, especially a chronic physical condition, can be especially destabilizing for folks who’ve gotten by on the hamster wheel. Not being able to physically do what you’re used to, or want to do, can trigger flashbacks and cause mood swings.

What then? How can you express that duality when you’re flooded with traumatic memories? How can you communicate with loved ones or advocate for yourself in medical settings when fear compresses the nervous system from all sides?

I don’t have a radical solution, except awareness. You are not alone if physical illness brings up CPTSD symptoms. There is nothing wrong with you if rest isn’t restful.

People have all sorts of “helpful advice” for rest or healing. Some of it may resonate. Often, advice sounds like condescension. Meditation, yoga, and Epsom salt baths might work for some people. They may really not work for others. The mental health space frequently discusses embodiment. But what if to be embodied is to feel tremendous pain? Why would anyone want that? I do believe that exercise and meditation, at whatever pace and intensity feels right to you, can be powerful. But I think it’s disingenuous at best, and harmful at worst, to promote mindfulness-grounding-techniques as a catchall. They’re not.

For some, it may be physically impossible to engage in specific somatic techniques. Or a lack of visibility may prevent some from attempting exercise. For some, even if physical activity is possible, it can incite emotional flashbacks.

I’ve cried in yoga. I say that with honesty and (very) little self-judgment. I was stretching, and then I was in tears. I can’t pinpoint specific memories that arose, just a feeling. My chest felt heavy and full, my arms were flexed, and most importantly, I felt safe. I trusted my yoga teacher. I knew no one else in the room was really paying attention to me. It was a pivotal moment for me. I allowed myself to feel, and my emotions weren’t chastised.

For a long time before that class, I didn’t allow myself to engage in physical activity in a way that felt genuine to me. For one, I didn’t know what that would be like. For another, it didn’t feel safe. I learned that really moving would mean unleashing something inside of me. Coming face-to-face with truth…we have good reasons for our defenses.

To live with CPTSD is to feel the world in technicolor. Uncertainty is saturated. Mistrust is amplified.

Beyond CPTSD, to be contradictory is to be human. Yoga might sound good in theory, but discomfort and uncertainty may arise in practice. Or, to yearn for close relationships and feel uncertainty, ambiguity, and mistrust. To live with CPTSD is to feel the world in technicolor. Uncertainty is saturated. Mistrust is amplified.

How could it not be?

Chronic conditions call for a change in routines. They can cause folks to reconsider their identities and what they value. Experiencing physical symptoms without having a clear diagnosis, or worse, a misdiagnosis, can be destabilizing.

Chronic Fatigue Syndrome, Endometriosis, IBS, Crohn’s Disease, to name just a small handful, can alter daily lives in profound ways. Experiencing shifts in schedules can be destabilizing. Being dismissed in clinical settings is all too common. Not everyone has the capacity or ability to advocate for themselves. And much more to the point, no one should have to advocate for basic needs! Until that’s a reality, honest, difficult conversations matter. Representation matters. Again, you are not alone if you are managing chronic physical conditions as well as CPTSD.

PMS and PMDD symptoms can mirror CPTSD ones. This can be especially distressing if you’ve been managing CPTSD symptoms. PMDD can feel like a new wave of re-experiencing trauma. While PMDD is defined as a “severe form of premenstrual syndrome” characterized by mood swings, suicidality, difficulty concentrating, sleep disturbances, changes in appetite, and feeling overwhelmed, it is not readily discussed in most medical practices (Johns Hopkins). This may lead to further misdiagnosis and/or dismissal of your lived experiences, which can further trigger CPTSD symptoms.

 Again, I wish I could offer some radical solution to the painful, confusing intersection of physical illness and CPTSD. Compassion can be radical. But that feels pretty theoretical for an article about the messiness, the loneliness, the isolation, the stigma, the medical gaslighting inherent to illness. Whoever you are, however your symptoms manifest now, or down the road, you are not alone.

Boscarino, J. A. (2004). Posttraumatic stress disorder and physical illness: Results from clinical

and epidemiologic studies. Annals of the New York Academy of Sciences, 1032(1), 141‑153. https://doi.org/10.1196/annals.1314.011 PubMed

Johns Hopkins Medicine. (n.d.). Premenstrual Dysphoric Disorder (PMDD).

https://www.hopkinsmedicine.org/health/conditions-and-diseases/premenstrual-dysphoric-disorder-pmdd

Photo by Matteo Vistocco 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.

Betsy Roy

Betsy Roy is a writer, educator, and graduate student at Temple University studying Clinical Social Work. She received her MFA in Creative Writing from Rutgers-Camden University, where she teaches Composition 101 and 102. She is passionate about the power of storytelling to heal and community-centered, trauma-informed approaches to mental health care. She has lived experience with CPTSD and knows firsthand the positive benefits of survivor-centered, holistic care.

Healing from CPTSD means gaining the capacity to choose

Of course, not everyone has the same access to making choices. Choice implies a certain level of privilege – in cruder terms, more money equals more choices, usually. In the West, at least, choice can feel like freedom, until indecision sets in.

I think for those healing from CPTSD, the concept of choice is a particularly thorny subject. Choice can feel like a luxury when you’re in survival mode. I know for me, it felt like a foreign concept. Something that wasn’t in the cards for me. Something for other people, like spa days or speaking three languages. Getting to choose what’s for dinner. Getting to choose hobbies. Getting to choose a career. Getting to choose a partner. All of these might feel unfathomable for someone on edge, waiting for the other shoe to drop.

I don’t think choice is intuitive for us with CPTSD. The fawn response, the tendency to appease others, is common for folks with CPTSD. The fawn response and choice are like oil and water. They don’t mix. The fawn response serves its purpose; it can feel safe, and it’s also very effective at crushing one’s self-esteem. It leads us further from agency and choice.

Furthermore, CPTSD is a stress disorder. A heightened nervous system can quash the subtleties inherent to choice. A common response to overwhelm is to dissociate. If a common feature of “choice paralysis” is a sense of overwhelm, then it doesn’t feel like a stretch to say that when faced with choices, the possibility for dissociation increases. Humans are safety-seeking. If the experience of making choices is unpleasant, it makes sense to avoid making choices. Avoidance leads to self-blame, and that feels bad, too, so the whole pattern repeats. I’ve faced my fair share of spirals.

Healing from CPTSD means gaining the capacity to choose. This isn’t as easy as it sounds. There’s no guidebook for something taken for granted by others. Choice is a human right. In the past, not knowing how to start choosing when it’s unfamiliar has made me feel further isolated from others. Like, I don’t belong. Psychotherapist Pete Walker describes grief as a necessary step in healing from CPTSD. I felt grief realizing I didn’t know where to begin when it came to making choices, something that’s supposed to be fundamental. That’s a big feeling to grieve. And it’s made slowly, starting to choose things that feel genuine to me, what I want for dinner, hobbies, friends, all the more satisfying. I’m not sure I’ll ever be completely comfortable with the choice. But I feel adamant that survivors have the right to honor their wants and needs, no matter how slowly, non-linearly, or counter-intuitively.

But I feel adamant that survivors have the right to honor their wants and needs, no matter how slowly, non-linearly, or counter-intuitively

While the idea of having choices is freeing (and can and should be!), the reality of learning to choose is bumpy. I say that because it’s true, and to reduce shame and stigma. I say that because getting to choose what’s for dinner, getting to choose hobbies, getting to choose a career, getting to choose a partner feels staggering, when for so long just getting by, hoping for kindness from people and places that hadn’t demonstrated kindness before, was the norm. I hope that if the freedom of choice feels uncomfortable or counterintuitive to you, too, that it becomes easier.

Photo by Jon Tyson 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.

Betsy Roy

Betsy Roy is a writer, educator, and graduate student at Temple University studying Clinical Social Work. She received her MFA in Creative Writing from Rutgers-Camden University, where she teaches Composition 101 and 102. She is passionate about the power of storytelling to heal and community-centered, trauma-informed approaches to mental health care. She has lived experience with CPTSD and knows firsthand the positive benefits of survivor-centered, holistic care.

           Negative core beliefs develop. How could they not? Persistent feelings of guilt, shame, and detachment from others – how can anyone be trusted?

           Emotions are stormy. How could they not be? There’s a desire to connect, but there are so many buts and ifs and asterisks. On edge and wary. Jumpy. The body’s jumpy, and so are emotions. Shame. Guilt. How could anyone understand? Further detachment from others. That feels inevitable.

           And with all the emotional and somatic storminess, finding and maintaining healthy relationships is a significant challenge, especially healthy relationships that typically need to be modeled. And if there’s a history of relational trauma…asking survivors to be able to find and maintain healthy relationships can feel like an almost-insulting, Sisyphean ask.

           June, Pride Month, can be a celebratory time. But for some LGBTQ+ folks with CPTSD, this month is rife with possibilities for painful triggers. Queer survivors of harm are more likely to have experienced bullying and harassment. Sexual violence in the LGBTQ+ community is often under-reported due to shame, stigma, and narrow societal definitions of what constitutes harm. (Tillewein, 2023) No one gets to define an experience besides the survivor. Having agency to honor your story and needs is a necessity and a human right.

           The decision to come out is courageous and can be fraught. Finding community in queer spaces can be transformative. Everyone deserves to feel loved, supported, and understood. Unfortunately, just as in any community, unconditional acceptance and positive, nourishing experiences and relationships aren’t always the case. But there’s a double bind: queer spaces are meant to be safe! It can feel taboo to speak up against a community you’re a part of. However, insularity and a community’s unwillingness to accept that harm has occurred are the opposite of safe.

           I’m writing for anyone who’s ever felt gate-kept, or not “enough”, or who’s been silenced, or harmed. I’m writing because I know the power of compassionate, accepting queer spaces. And I also believe in voicing when harm has occurred and when systems need to change.

           For some folks, their family of origin didn’t accept their queerness. Feelings of shame and guilt can be amplified further if those folks experience LGBTQ+ sexual violence. The repeated traumas of familial ostracization, harassment, bullying, and/or violence compound pain. No one should feel like they must suffer in silence, regardless of identity. Sexual violence and gender-based violence are violence.

           For adult survivors of child sexual abuse, navigating sexuality can be challenging. Feeling confident in one’s sexuality and identity is often seen as a given in our societies. But that’s not always the case, regardless of sexual orientation.  (Gewirtz‑Meydan & Godbout, 2023) For LGBTQ+ adult survivors of child sexual abuse perpetrated by someone of the same gender, feelings of pain, anger, sadness, and confusion are very real but can feel impossible to disclose or discuss. But that discomfort is not the individual’s to hold, but rather it’s our culture’s frequent inability to acknowledge pain and address difficult topics.

            To balance honoring one’s identities and grieving one’s past is courageous. To feel fully and externalize shame that isn’t yours to hold is a celebration. To acknowledge the times you felt most yourself this past year is a celebration. To share your feelings of confusion, joy, or discomfort with a loved one, a pet, in a journal, or with a therapist is a celebration.

            If Pride parades aren’t your thing, if “rainbow capitalism” feels hollow, if being told to just find and trust in healthy relationships feels dismissive, I get it. If June feels painful and triggering, if big parties and crowds feel unsafe, listen to your intuition. Your courage to honor your needs and boundaries is a celebration!

           Individuality should be honored, and vulnerability should be celebrated in June and in all months, but that may not look like a big city parade with streamers and corporate-sponsored parasols. Celebrating Pride might mean reading a cozy book or going on a hike. Pride month can be a time of reflection. It can just be a month. You can change your mind on what Pride means and how to best celebrate. You’re the one who gets to decide.

References

Alberti Center for Bullying Abuse Prevention. (2020). Bullying, cyberbullying, and LGBTQ

           students [PDF]. University at Buffalo. https://ed.buffalo.edu/content/dam/ed/alberti/docs/Bullying-Cyberbullying-           LGBTQ-Students.pdf

Gewirtz‑Meydan, A., & Godbout, N. (2023). Between pleasure, guilt, and dissociation: How

t           rauma unfolds in the sexuality of childhood sexual abuse survivors. Child Abuse & Neglect, 141, Article 106195.            https://doi.org/10.1016/j.chiabu.2023.106195

Tillewein, H., Shokeen, N., Powers, P., Rijo Sánchez, A. J., Sandles‑Palmer, S., & Desjarlais, K.

           (2023). Silencing the Rainbow: Prevalence of LGBTQ+ students who do not report sexual violence. International Journal of Environmental Research and Public Health, 20(3), 2020. https://doi.org/10.3390/ijerph20032020

Photo by Cecilie Bomstad 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.

Betsy Roy

Betsy Roy is a writer, educator, and graduate student at Temple University studying Clinical Social Work. She received her MFA in Creative Writing from Rutgers-Camden University, where she teaches Composition 101 and 102. She is passionate about the power of storytelling to heal and community-centered, trauma-informed approaches to mental health care. She has lived experience with CPTSD and knows firsthand the positive benefits of survivor-centered, holistic care.

Storytelling connects us to the world around us, to the forests and mountains and critters in our city parks

I believe in storytelling to understand others and ourselves. Storytelling connects us to the world around us, to the forests and mountains and critters in our city parks. Storytelling is deeply human. If you’ve ever been around a toddler, you know we start expressing our hopes, desires, wishes, and beliefs at a young age. We live in a time saturated with stories. Social media has made it so you can “stream” your day. We’re taught that stories have clear beginnings, middles, and ends, cohesive narrative arcs. While we have greater access to stories and the ability to share our stories than ever before, certain stories, ones with neat packaging and clear beginnings, middles, and ends, are privileged over messier, more non-linear ones. 

I teach storytelling. Twice a week, my college students come to my class and unload all sorts of stories. They learn to write research papers, personal reflections, and open letters. I see the power of storytelling; the narrative peaks and valleys. The power of stories to make us think, I’ve experienced something like that, maybe I’m not alone!

I’ve experienced something like that, maybe I’m not alone!

I’ve studied narrative therapy, a technique that aims to externalize survivors’ pain and uses stories to re-map lived experiences. It can be a deeply enriching practice. I have seen remarkable examples of folks with CPTSD embracing their voices, creativity, and personhood. 

I believe so strongly in storytelling. And yet, when I try to write my own stories the way we’re taught, with clear beginnings, middles, and ends, I feel like a hypocrite. I write “around” my own stories. I have no clear narrative peaks and valleys in my life stories. Every time I try to pin threads into a cohesive line, I end up with spirals. Loops and swirls. Threads in every direction. Traumatic memories are often fragmented, jagged, and defy neat organization along a narrative arc. 

There’s never just one storyline. Traumatic memories come in bursts; in images and flashes and feelings, sensations, and somatic jolts. Traumatic memories can have a more powerful impact. They’re more visceral. They have more color, texture, and smell. A memory can haunt us without needing a beginning, middle, and end. How can you place memories, our life stories, on one timeline? On one narrative thread? 

Trauma does a wonderful job of rendering societal constructs, like neat story arcs, meaningless

When you’ve never talked about something before, or, rather, you tried for years as a very little kid to tell, desperately, but were shut down, when you’ve been trained not to talk, when your identity formed around keeping secrets, it’s hard to get the words out. Because what are the words? Trauma does a wonderful job of rendering societal constructs, like neat story arcs, meaningless. 

My therapist once meant to say “non-linear” about a series of thoughts, but said “extra-linear” instead. Extra-linear makes sense to me, though. Telling your story if you’re a survivor of repeated harms means weaving threads that can’t be reconciled. The threads stick out at odd angles. The threads will almost certainly be of different shades and textures. There might be missed stitches and dropped ones. Your narrative might be a little raggedy. You might get halfway through and realize you need to start over. I do that often. 

We’re told sharing your story can be healing. And it can be! But it isn’t always safe to share your story. Knowing who is a trusted audience is important, and can be challenging for trauma survivors. If your safety wasn’t always ensured growing up, or at any time, it can be hard to trust your instincts. I remember feeling so ashamed, realizing that. But it’s not shameful. No one’s safety, especially some of our most vulnerable populations – children, should ever be compromised. Learning safety takes compassionate work and time. There’s certainly nothing linear about learning to trust others and yourself. Our brains get used to patterns. There’s no one way to change our thoughts and behavioral patterns. If there were one answer, one story, one mantra to repeat to heal relational trauma, the mental health and wellness industries wouldn’t be worth billions of dollars. 

I have a bachelor’s degree and a master’s degree in storytelling. I teach storytelling, and I’m studying therapy (the art of storylistening), and yet, when it comes to constructing a narrative about my experiences, I falter. And I don’t say that to admonish myself, very much the opposite. Linear stories are often boring. Human experiences, beyond trauma, can’t be neatly categorized. Telling your stories, when it feels safe, can be meaningful and fulfilling. Don’t feel constrained by narratives or the supposed limits of story arcs; go for the extra-linear. It’s in telling our stories and questioning our core beliefs that we can imagine new possibilities, how things might be different. It’s not easy work. It’s certainly not linear. And I can’t give you a concrete timeline. Re-imagining our lives is probably the work of a lifetime. I know for me, telling my story and re-telling it counters the traumas I have experienced. It gives me agency and hope. And I hope you find those too; however, best fit your needs and interests! 

Photo by Nong 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.

Betsy Roy

Betsy Roy is a writer, educator, and graduate student at Temple University studying Clinical Social Work. She received her MFA in Creative Writing from Rutgers-Camden University, where she teaches Composition 101 and 102. She is passionate about the power of storytelling to heal and community-centered, trauma-informed approaches to mental health care. She has lived experience with CPTSD and knows firsthand the positive benefits of survivor-centered, holistic care.