You Have Needs

By Padma Gordon

This week in our Women’s Empowerment Circle, we talked about recognizing that you have needs. As a raregiver, it’s important to include yourself on your list and remember, you matter. Period. You might begin by looking at what you are already doing for yourself on a daily basis and practicing a healthy dose of self-acknowledgement. It can be useful to create a ta-da list versus a to-do list. A ta-da list names what you have already done, giving you a place to pause and recognize your effort, which feels very different from a to-do list that can quickly become overwhelming.

Many raregivers experience profound fatigue after years of caregiving, going to appointments, navigating crises, and living in a state of constant vigilance. This is why tending to yourself is not optional, it is essential. When there is even a brief pause in the emergencies or challenges, you might allow yourself to explore what you like and what you don’t like, perhaps for the first time in a long while. You may begin to create a rhythm in your life that includes moments that nourish you, body and soul, small practices that bring steadiness, comfort, and a sense of being more than a caregiver.

We also spoke about the deep uncertainty that accompanies loving someone with a RARE condition. It takes tremendous courage to stand in the not knowing, not knowing what will come next, not knowing how the story will unfold. Surrounding yourself with supportive people can help you stay grounded, people who walk beside you and remind you to care for yourself so you do not become depleted or unwell. Grief will visit too, sometimes quietly, sometimes overwhelmingly, as you mourn the life you imagined. In those moments, it is wise to pause, surrender, and feel what is there. This is how we begin to accept what is, even as we reshape what will be. All of us live in the unknown, and raregivers live there more consciously than most, so practice self-compassion and nourish yourself, every single day.

As a gentle reflection, you might ask yourself at the end of each day, What did I do today that supported me, even in a small way? Let that answer be enough. It counts. Over time, these small acknowledgments become a steady foundation, reminding you that you are not only caring for another life, you are also tending to your own.

Coming up next week: Doing It Together: Team Play: A Communication Toolkit 

Your Rare family works as a team and as the primary caregiver, you are the captain. Although you are in it together, share a common vision, and goals–someone has to lead and one of the most essential skills in leadership is attunement. We will explore some key elements of what makes for a great team including collaboration, listening and validation. You will learn how to be a better team player by practicing these skills and cultivating a strong team. Let’s cheer each other on while expanding our communication skills and our self-care.

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.