The Art of Clear Communication: Being Seen and Heard
By Padma Gordon
The power of being seen and heard cannot be overstated, especially for raregivers. Mindful relating begins with being connected and aligned with yourself so you can communicate from a grounded place and say what you need to say — including the hard things. As a raregiver, there are moments when you may feel overwhelmed and it seems like everyone needs you at once. This is your invitation to check in with yourself: What is your capacity right now? What can you realistically offer, and what would stretch you to go beyond the boundaries of what is true? Noticing what you can and cannot commit to is an act of self-love, and it allows you to support your Rare child, friends, and loved ones in ways that are sustainable.
You may have concerns that arise around annual medical tests — even when your Rare child has been relatively stable for a while. That familiar feeling of waiting for the other shoe to drop can activate deep fear. The fear wants to be seen and heard (which helps you to metabolize the feeling) so you can be the advocate you need to be for your loved one. Skillful advocacy requires clarity, presence, and courage. Before a medical appointment, take a few minutes to breathe deeply, sit quietly, and ground yourself so you can speak clearly from your heart. Have your data organized so you can speak clearly. Remember, you are the expert even when meeting with a doctor and you deserve to be respected and understood. It takes a lot to communicate directly with medical professionals, and frustration is natural — but your voice matters.
In moments of heightened emotion — whether it’s yours or someone else’s — pause, breathe, and see if you can set a boundary with compassion. From here, you can respond with curiosity rather than reactivity. Curiosity opens doors; control closes them. When people feel validated by your genuine interest, they tend to soften and relax. And if you find yourself blurting out something that isn’t quite what you meant, you can pause and have a do-over — just like on the playground when you were in school. Communication is a skill and it takes practice.
One of the most powerful tools you can use is active listening. You might say, “I hear you,” or, “What I think I’m hearing you say is… Is that accurate?” Slowing down, speaking from your heart, and practicing deep listening creates conversations where both people feel seen and heard. And as a raregiver, you need this more than most — not just to give, but to receive, to be witnessed, and to be met with care.
Coming Up Next Week: The Necessity of Setting Boundaries (Stage 3: Shifting Responsibilities)
Parenting your Rare child means navigating dynamics with your extended family. Oftentimes, your relatives don’t understand the nature of your child’s disease or what it’s like for you to live as a Raregiver. Misunderstandings can happen along with possible denial that your child even has a medical issue. This is a time to set a clear, firm, loving boundary and many of us are challenged to set boundaries in our lives–especially with relatives.
You may also find yourself comparing your Rare child to your neurotypical nieces and nephews when you see photos of them hitting milestones that your Rare child may never hit. Learn how to set boundaries with yourself and others. Boundaries are an expression of self-love. Come share your experience with the community.
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.
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We look forward to being with you soon.
𓆩♡𓆪 𓆩♡𓆪 𓆩♡𓆪
