The Beauty of Boundaries
By Padma Gordon
As a caregiver for a loved one with a Rare disease, setting boundaries is one of the most powerful acts of self-love you can practice. When you set internal or interpersonal boundaries, you prioritize yourself—your sleep, your nourishment, and your well-being. You keep appointments with yourself to exercise or rest, which is a way of honoring your own worth.
At the same time, you may need to set boundaries with others who don’t fully understand your medicalized lifestyle. They can’t always grasp the many layers of cultural and personal challenges you’re navigating. So, be clear and compassionate. It’s okay to say no, even if it feels uncomfortable, because you are holding so much. If you encounter someone’s denial, let them gently know that you hear they are trying to be helpful and what they are sharing is not landing in you as a contribution. You can use the phrase, “would you be willing to…” to invite them to relate to you in a way that serves. Honor your needs by asking for what will be most nourishing.
In moments of crisis, it’s easy for internal boundaries to slip away, leading to catastrophic thinking. Practice mindfulness, and be patient with yourself. If you notice you’re at capacity, it’s okay to let others know that you can’t take something on right now. You recognize how much you are carrying—like being on hold for 45 minutes just to coordinate your child’s transport—and it’s vital to stay in your lane. You don’t have to carry everything—just take it one boundary at a time.
Coming Up Next Week: Recognizing You Have Needs (Stage 4: Brutal Realities of Full-time Care)
When your loved one needs full-time care, your life changes drastically. You may have to stop working or increase your work hours due to greater financial strain. If you stop working, you may lose touch with work contacts and feel isolated. You have less time for yourself and the relationships with your partner and your neurotypical children. At times, caregivers find that they are completely skipping over themselves while the idea of exercise or sitting quietly fades from view.
It’s important to recognize you have needs and your needs matter. When your needs go untended, your capacity to care for others will decrease. In this session, you will learn how to discern what it is you truly need and practice the building blocks for making skillful requests.
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.
