Put Your Feet Up and Relax

By Padma Gordon

As a caregiver navigating the world of Rare disease and a complex medical lifestyle, the first step toward caring for yourself is recognizing that you have needs too. Your needs matter. In the intensity of caregiving, it can be easy to ignore yourself completely, especially early on when things feel overwhelming and uncertain. You may find yourself constantly problem-solving, trying to fix things outside of your control, or spiraling into catastrophic thinking and becoming anxious as you fall into a cavern of “what ifs.” Self-care is not selfish; it is essential.

Sometimes self-care looks like taking a longer break, and sometimes it’s simply allowing yourself micro-moments of rest, quiet, movement, creativity, or joy. Maybe you pull out your telescope and spend ten minutes looking at the stars. Maybe you write poetry, listen to music, photograph flowers, or sit quietly with your tea in the morning light. The question is: can you give yourself permission to turn toward yourself without feeling guilty?

Many caregivers become so accustomed to living in survival mode that when life briefly calms down, they no longer know how to rest. Instead, they create more projects, stay busy, remodel the kitchen, start a business, or keep moving so they do not have to slow down enough to feel. But what if you practiced pausing instead? What if you allowed yourself to soften into small moments of beauty and ease?

Self-care builds resilience because life inevitably includes uncertainty, loss, and change. It also helps you recognize what is actually within your control. One participant in our group shared that macro photography brought her “1% more joy” because it helped her notice the extraordinary beauty in plants and flowers she had previously passed by. This is the power of slowing down long enough to receive something nourishing.

You do not have to carry everything alone. Part of caring for yourself means learning to be open to receiving support and asking for help when you need it. It also means cultivating cautious optimism — allowing yourself hope while staying grounded in reality. A simple daily gratitude practice can help rewire the brain toward steadiness and resilience. Writing down ten gratitudes each morning can shift the tone of your day and help you notice the beauty that still exists alongside hardship. Watch the birds outside your window. Listen to the wind moving through the trees. Smell the sweetness of the blossoms in your garden. Pause for twenty seconds and truly breathe in those moments of goodness. All of this is self-care. So put your feet up, take a deep breath, and relax.

Coming Up Next Week: Being A True Friend: Practicing Self-Compassion

(This can happen in Stage 1 or anytime along the journey)

Dealing with medical complexity changes many aspects of life—including your relationship with yourself. In the midst of navigating appointments, advocacy, and shifting social dynamics, this session invites you to begin to practice self-compassion and become a true friend to yourself. Cultivating inner steadiness can help you meet the awkward or uncomfortable moments that sometimes arise when others don’t know how to respond to your loved one with special needs.

We will also explore how friendships may shift—some people pull away while others step forward with deeper care and understanding. Learning to communicate what you need, trusting your intuition, and allowing space for relationships that truly support you and your Rare family can open the door to more authentic connection.

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.