When Life Feels Like Too Much

Photo by Monika Grabkowska courtesy of Unsplash

What happens when things are uncertain?

Where do you go when everything feels like just too much?

This was the question that anchored our Women’s Empowerment Circle on Tuesday. It’s a familiar one for many of us, especially for Raregivers. When you’re caring for a child with a Rare disease, uncertainty becomes a daily companion. The unknowns can pile up fast, and with them comes a very specific kind of emotional fatigue.

According to Merriam-Webster, the word overwhelmed means “an extreme level of stress, emotional and/or cognitive intensity to the point of feeling unable to function.” And for Raregivers, this is more than a definition, it’s a lived experience.

When Overwhelm Becomes a Way of Life

There are moments, maybe more than you’d like to admit, when you feel so overwhelmed that your brain protects you by blocking things out. Maybe a detail about your child’s diagnosis slips through the cracks. Maybe you minimize a medical event that would shake anyone else to their core. Maybe you don’t cry when you desperately need to.

It’s a survival strategy. One that works… until it doesn’t.

Sometimes we push through and put our feelings on hold because there just isn’t time. But what if you gave yourself permission to pause, place your hand over your heart and simply feel?

Leaning into discomfort is hard. But it’s also where healing begins. Avoiding your feelings can lead to rumination, anxiety, even insomnia. And from there, the body follows with exhaustion, illness and burnout.

What might change if you allowed yourself to process the pain as it arises? Not all at once. Just in small, manageable ways. Give yourself space. Let your nervous system catch up to your life.

When you get grounded and tend to yourself, even for a few minutes, you become more resilient. You build a lifestyle that’s sustainable, one breath at a time.

Surrendering What You Can’t Control

Here’s the hardest part: we’re not in control. Not of your Rare child’s diagnosis, not of the way each day unfolds. However, you are in control of how you meet those moments.

What if you set aside just five minutes a day to be still? To sit in silence, breathe, and reconnect with the quiet strength within you. This is a powerful form of self-care where you can make a daily deposit into your inner sanctuary. Mindfulness isn’t about fixing everything or analyzing every emotion. It’s about finding the middle way, the sweet spot between awareness and acceptance.

Let Creativity Be a Lifeline

Creativity is medicine. Whether you sing, write, paint, or simply doodle, creative expression brings a kind of healing that words alone can’t offer. You are under immense pressure every single day. That means your need for self-care isn’t optional, it’s essential.

Try carving out sacred time just for you. Even if it’s only ten minutes. Your Rare child may interrupt, because they’re unaware of how much you’re holding. And yes, it might be hard to hold the boundary in the face of their needs. You may even feel resentful. That’s okay. You’re human. Consider setting them up with snacks, activities, or someone to step in if there’s an emergency. This isn’t selfish, it's self-love. It’s survival. It’s love — for them, and for yourself.

You Matter

Take one step. Then another. There is no rush. You’re not just surviving. You’re showing up, day after day, with a heart full of love and a mind full of worry and hope, all woven together. Take a breath and emember, you matter. You’re allowed to rest. You’re allowed to feel. You’re allowed to take up space.

Join Us

Coming Up Next Week: The Places We Go When Things Don’t Go As Planned

As a Raregiver, you are very familiar with things not going as planned and after a while you may find yourself in a perpetual state of disappointment which can weigh you down and lead to feeling depressed or deeply distraught. Brene’ Brown defines disappointment as, “unmet expectations. The more significant the expectations, the more significant the disappointment.” We will have a conversation about how disappointed you were when you realized that your child was not going to hit many milestones and how you felt about it. In this safe container, you can share your feelings of disappointment and regret and discover some tools for meeting disappointment and how to become more resilient.

Please Join Us for the Women's Empowerment Circle every Tuesday at 10am PST

Zoom Link: https://us02web.zoom.us/j/84782918881

We look forward to being with you soon.