Saying the Hard Things
By Padma Gordon
In this week’s Women’s Empowerment Circle, we talked about something many raregivers face, having the hard conversations. When you are caring for someone with a Rare disease, difficult topics inevitably arise. You may find yourself speaking with an aging parent about end of life, with a partner about the progression of illness, or even facing the unimaginable possibility of losing a Rare child before you. These conversations carry deep emotional weight, and avoiding them rarely makes them easier. What helps is approaching them with steadiness, compassion, and courage.
Before saying the hard thing, it helps to first attune to yourself. Take a moment to notice your breath, feel your feet on the floor, or sense the steady rhythm of your heart. Neuroscience shows that when we slow down and bring awareness to the body, we activate the parasympathetic nervous system, allowing the brain to shift into a more regulated state. From here, the prefrontal cortex, the part of the brain responsible for empathy, listening, and thoughtful communication, is more available. When you speak from this grounded place, difficult conversations are far more likely to unfold with care.
From that steadiness, you can lean in with honesty and vulnerability. When we own our feelings and allow ourselves to be seen, vulnerability becomes a bridge to intimacy. These conversations may involve practical matters like funeral arrangements or whether a Rare loved one will come home from the hospital. They may also include supporting a neurotypical child who has grown up with a Rare sibling. One participant shared that when she speaks with her younger son about his Rare older brother, she encourages him to value himself, acknowledges the impact of his brother’s illness, and practices gentleness, kindness, and surrendering expectations about how he should feel.
It also helps to remember that timing matters. Difficult conversations are best when both people are rested, calm, and available to listen. If a conversation becomes too charged, you can pause and return to it later when there is more space. And when the weight of it all feels heavy, you can give it over to God, your higher power, or the universe. You are not walking this path alone. You are held by something greater, and you are held by this warm and caring community of raregivers.
Coming Up Next Week: Caregivers Island: Losing Yourself, Finding Yourself (6: Finding Meaning)
As a raregiver, it can be easy to lose yourself in caregiving and you may experience a radical shift in your perspective on life when becoming a raregiver is your primary identity. When this happens, self-care often falls away or drops to the bottom of your impossibly long to do list. Your priorities shift and you dive headlong into learning everything about your child’s Rare disease as well as managing their care each day. Join us for a conversation with other Rare caregivers who are discovering ways to resource themselves as they care for their Rare families. Bring an open heart and trust that you have wisdom to share.
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.
