Your Needs Matter, Too
By Padma Gordon
As caregivers, it can be incredibly easy to put your own needs last. There is always something that needs to be done, someone who needs your attention, another appointment to schedule, another question to answer. You have needs, too—physical, mental, emotional, and spiritual needs. So how do you know what you need, and when do you find the time to tend to yourself? Sometimes the signs are obvious. You may be exhausted, overwhelmed, isolated, or simply realize you no longer have the capacity to show up for the Rare person you love in the way you want to. Sometimes your body tells you before your mind catches up. Your needs might be as simple and essential as eating well, sleeping, going to your own doctor’s appointments, meditating, praying, or having a few moments of quiet.
The reality is that when you continually put yourself last, you can become depleted and eventually, even resentful. And this is not a failure. It is a human response to giving and giving without enough replenishment. When you are caring for someone with a Rare disease, your life can feel as though it is no longer entirely your own. So rather than waiting for a large block of time that may never come, look for the little windows. While you are waiting at the doctor’s office, between appointments, or sitting in the car, what might nourish you? Keep a book, journal, sketchbook, or art supplies in your car. Take a few minutes to write, draw, breathe, or simply be. These micro-moments of self-care may seem small, but over time they can become meaningful ways of remembering that you are a person with needs and desires beyond your role as a caregiver.
And don't forget about humor. Sometimes laughter is a genuine form of self-care. We need moments when we can laugh at life, laugh with someone we love, and even laugh at ourselves. And when you are overwhelmed, perhaps the most important thing you can do is pause. Retreat to a quiet corner of your home with a book. Take a walk. Sit somewhere peaceful and acknowledge what is here: the overwhelm, the isolation, the despair, the exhaustion. You don't have to fix it immediately. You can feel your feelings and offer yourself the same compassion you would offer someone you love. It is okay if everything doesn't get done. It is okay to rest. Active rest is still tending to your life. Your needs matter, too. In fact, caring for yourself is an important part of caring for the person you love.
Coming Up On August 25: Being A True Friend: Practicing Self-Compassion
(Stage 1 or anytime along the journey)
Description: 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.
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.
