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.
Lee Frost has worked for nonprofits and marketing agencies focusing on healthcare for the past ten years. She’s a patient advocate and recently launched a blog about menopause and CPTSD called the Sinsemillier. She grew up in the Boston area and has a BA from UMass Boston and a master’s from Harvard Extension School. Lee lives north of Boston with her husband, where they both love to nerd out on sci-fi and fantasy.