Living In The Key Of Self-Love
By Padma Gordon
When your life as a caregiver shifts suddenly—symptoms changing, roles evolving, work hours reduced or lost altogether—it can feel like the ground beneath you has disappeared. The mind tries to regain control by racing ahead, spinning stories, searching for certainty where there may be none. And yet, this is the moment to come back to your body. To anchor. To steady yourself in what is actually here. Caregiving, especially in the context of Rare disease, asks you to live with ongoing uncertainty. The most sustainable way through is not by figuring everything out, but by placing one foot in front of the other and returning, again and again, to the present moment.
Pause and gently ask yourself: what is already supporting me? What fills my cup, even in small ways? Maybe it’s a quiet cup of tea, a short walk outside, a moment of prayer, or simply taking one full breath before responding to the next demand. You may also notice where you’re running on empty, where your nervous system is stretched thin and your sense of self feels distant. This is your invitation to recalibrate. One simple practice is to ground through your feet: feel four points of contact—the base of your big toe, little toe, inner heel, and outer heel, and let your weight rest evenly through the arches. Stack your body over that center and allow the earth to hold you. If you notice yourself speeding up when you speak or move, it may be a sign that fear has taken the wheel. Slow down. Breathe. Come back into your body.
As you navigate this path, you may also encounter others who offer explanations or theories about your loved one’s condition. Often, this comes from their own discomfort with uncertainty. You can meet this with compassion while still honoring your limits. A simple response like, “You may be right, and you may not be,” can create space without pulling you into unnecessary engagement. From there, you get to choose: is this relationship resourcing me, or depleting me? Boundaries are not a rejection of others—they are a commitment to your own sustainability. You are carrying a great deal, and it’s okay to be discerning about where your energy goes.
Living in the “key of self-love” as a caregiver is not indulgent, it is essential. This path, while incredibly challenging, is also a profound mindfulness practice. It asks you to stay present, to soften your grip on certainty, and to meet yourself with compassion again and again. In a culture that often struggles to face illness and mortality, you are walking a path that requires courage and honesty. Let your grounding practices, your boundaries, and your moments of connection guide you home to yourself. That is where your strength and your steadiness lives.
Coming Up Next Week: Becoming A Juggler: Adjusting to Medical Life with or without a Diagnosis (Stage 2)
Becoming a caregiver begins with increased visits to the doctor and you will have a lot of feelings arise as your life shifts and you learn how to juggle complex care, develop the skills needed to navigate the healthcare system and take care of yourself as you navigate your new medicalized reality. Come share the skills that empower you to advocate for your loved one’s needs as you tend to your own. Please join us for a potent conversation.
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.
