Holding Space for the Hard Things

By Padma Gordon

Communicating about the hard things is a challenge many caregivers of loved ones with Rare diseases face and misunderstandings are common. It can be easy to take things personally and let frustration, fear, or sadness take over. However, when you give people grace and resist making their reactions mean something about you, life becomes a little easier. Instead of getting pulled into someone else's mood, stay connected to yourself. Speak from your heart, stay grounded in what is true for you, and remember that caring for yourself is an essential part of caring for others.

Early in the medicalized journey, it can be incredibly difficult to face the reality that your loved one may not be hitting the milestones that other people’s children are hitting. Maybe feeding is a struggle, development happens very slowly, or doctors simply don't have any answers. Rare diseases are often mistaken for other more common diseases, and some families spend years searching for a diagnosis—or never receive one at all.

One participant in our group shared that getting a diagnosis ultimately changed very little because her son's condition is so rare that there is still so much uncertainty. Over time, she learned to be honest and vulnerable, to approach difficult conversations with empathy, and to recognize that everyone is walking with challenges of their own. Sometimes the most courageous thing you can do is slow down, turn toward the reality of your life, and make space for the grief, stress, and uncertainty that naturally arise.

Give yourself permission to feel the full range of feelings that appear. Allow yourself to grieve, cry, and recognize that your feelings make sense. And, if your loved one is becoming aware of their own limitations, listen with an open heart, validate their experience, and gently help them recognize what remains possible.

Just as importantly, allow them to have their own journey. You can walk beside them, but you cannot walk the path for them. When uncertainty feels overwhelming, ask yourself: How can I be with the things I cannot change? How can I stay connected to myself and connected to love? Be kind to yourself. Be gentle. Learning to stay present with life's hardest moments is a practice, and like any practice, it grows stronger with time.

Coming Up Next Week: Caregivers Island: Losing Yourself, Finding Yourself (Stage 6: Finding Meaning)

As a caregiver, it can be easy to lose yourself in caring for another’s needs and you may experience a radical shift in your perspective on life when becoming a caregiver 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 or another adult’s disease as well as managing their care each day.  Join us for a conversation with other caregivers who are discovering ways to resource themselves as they care for their 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.