Rolling The Dice: Navigating PTSD and CTSD
By Padma Gordon
This week in our Women’s Empowerment Circle, we explored something many raregivers quietly carry: the experience of losing yourself in caregiving. When your days are shaped by the needs of your Rare child, it can become easy to move away from your own center. The possibility is to stay connected to yourself as your life becomes consumed by caregiving. We reflected on simple practices that help anchor you: returning to the breath, pausing, engaging in prayer or meditation, and gently guiding your mind toward what is good. We spoke about MOGS—moments of grace—and the discipline of noticing beauty, joy, and blessing, even in the midst of uncertainty.
The arc of a caregiver’s life can be profoundly demanding. Many raregivers live with symptoms of PTSD or CTSD, chronic traumatic stress syndrome, where the body and mind continually anticipate the next crisis. This can look like bracing, future-tripping, or getting pulled into catastrophic thinking. It can be supportive to shift toward accurate reporting, pausing and assessing what is actually happening right now. This practice of presence helps settle the nervous system and interrupts the stress response. Journaling can also be a powerful ally. Putting your experience into words allows it to move through you, and when you reread your story, you may begin to recognize how much you are holding.
One participant shared how PTSD can arise each time she revisits her child’s diagnosis—retelling the story, awaiting test results, or walking into another appointment filled with uncertainty. “It’s like rolling the dice,” she said. Alongside that uncertainty comes the questioning: Am I doing enough? Did I do enough? These are deeply human responses to an uncontrollable reality. It’s important to ask yourself honestly whether you can meet every demand being placed on you and still remain balanced. Between work, caregiving, and your own well-being, something has to give—and it need not always be you. You are not in control of how your Rare child’s condition unfolds, and taking on that level of responsibility will deplete you.
Self-care is self-love. Practice self-compassion in small, consistent ways. Take micro-moments throughout your day to check in, breathe, soften, and tend to your own heart. Staying present—being here, now—allows you to meet your life with more steadiness. From that place, you can keep going by including yourself in the care you so freely give.
Coming Up Next Week: Allowing Yourself To Blossom: What Happens Now?
Description: When being a raregiver has been the central focus of your life and identity, the end of caregiving can trigger loss, grief, guilt, and unanticipated feelings of relief. The feelings of grief can last for years when your Rare child dies. You may experience new waves of feelings when milestones arrive that your Rare child would have hit. You might feel depressed or unmotivated which is natural and there will be opportunities to redefine your identity, value yourself, affirm your inherent goodness, and find a new sense of purpose as you allow yourself to blossom. Be gentle with yourself, go slowly and trust the process. Please join us for a powerful conversation regardless of where you are on the raregiver’s journey.
Please Join Us for the Women's Empowerment Circle every Tuesday at 10am PST.
You may not realize how much you need the Raregivers community until you find it.
Zoom Link: https://us02web.zoom.us/j/84782918881
We look forward to being with you soon.
