Self-Care Begins With Awareness

By Padma Gordon

Self-care begins with mindfulness. Self-care and awareness are interwoven. When you are aware and oriented toward caring for yourself, you begin to notice what you need. You notice when you are tired, when you need some water, when you need to eat, or when you need to stand up and go outside to stretch your legs.

You begin to notice what is happening inside of you rather than simply moving from one task to the next. As a caregiver, all you can do is take one day at a time, one moment at a time. You can become more present to each moment by pausing, taking three deep breaths, and simply turning your attention inside.

When you practice this throughout your day, you are creating new neural pathways to presence. You are teaching your nervous system that you can pause and check in with yourself, even in the middle of something difficult. Perhaps you are sitting with a doctor who has a very different opinion from yours about your rare family member.

You can say, “Excuse me, I just need a moment,” and take three deep breaths. Or you can do it quietly while you are having the conversation. That small pause can help you stay connected to yourself so you can listen, feel, and respond rather than automatically falling into a default mode. When we are not present with ourselves, we may shut down, become aggravated, or lose touch with what we actually need and want to say.

Being a caregiver for a rare family member is a long game. There may be years of appointments, uncertainty, advocating, adapting, grieving, hoping, and making decisions. This kind of caregiving asks a tremendous amount of you, which is why caring for yourself is not an indulgence. It is part of creating a sustainable life. Getting a good night of sleep, eating a nourishing meal, taking a walk, sitting quietly for a few minutes, or doing something that brings you joy are all acts of care. For some caregivers, the idea of even considering your own needs is foreign. In fact, one of our participants in our support group this week said just that very thing.

As a caregiver, you are putting on a happy face very often. You are in charge, responsible, and “on,” yet the truth is you are not always happy. You may be tired, angry, scared, overwhelmed, or simply having a hard day. It is okay to show the people you love that you are having a moment of challenge.

Self-care can mean creating small rituals that bring you back to yourself, practicing self-compassion, engaging in creative pursuits that nourish your soul, and spending time in community. When you pause and turn toward yourself, even for three breaths, you are reminding yourself, “I am here. I matter. I am worth caring for.” And from that place, you can meet the next moment.

Coming Up Next Week: Spread Too Thin (Stage 4: Full-time care)

How does becoming a full-time caregiver impact the relationships with the rest of your family members? Are you able to give quality attention to your neurotypical children or your spouse? We will talk about what it is like to grow up in a home where someone has a rare or chronic disease.

Your identified patient will naturally require more of your attention than the rest of your family and it can be tricky to feel that there is enough of you to go around. In short, you are spread thin. We will have a conversation about how to create a sustainable life for yourself which includes tending to yourself as well as others. You matter. How do you care for yourself in the midst of it all?

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.