Partners in Care: Navigating Lupus Together
Introducing the Care Partner Toolkit
Helping a loved one manage a chronic health condition like lupus is a collaborative, evolving journey. Care partners provide essential support in navigating lupus together.
Rather than a transaction of giving and receiving care, often referred to as caregiving, care partnership captures the mutual respect, patient empowerment, and shared responsibility in working together through the ups and downs of life with lupus.
Being a care partner for someone in your life who is living with lupus can involve a variety of important roles, including:
- Accompanying them on doctor’s visits and taking notes
- Helping them navigate health insurance challenges
- Managing medications
- Taking care of household chores or childcare so they can rest
- Offering emotional support and so much more
The support your loved one with lupus needs depends on their unique circumstances and preferences. Disease activity can ebb and flow with the cycles of lupus flares and periods of remission that are characteristic of lupus. Your role within the care partnership may shift as circumstances change over time.
Communication
Offering support to your loved one with lupus is a reflection of the relationship you share. Being a care partner means asking your loved one with lupus what they need and respecting their boundaries and wishes as you care for them in emotional and tangible ways. As in any relationship, communication is vital.
Ask your loved one with lupus what they most need your support with, and schedule time to check in regularly regarding their changing needs. Be open to receiving feedback and remain curious about what it feels like for them to be receiving care partnership support from you. Empathy and active listening keep your relationship strong.
Self-Care
Being a partner means your needs matter too – caring for someone with lupus can be a meaningful role. It can also lead to physical and emotional exhaustion in the absence of healthy boundaries.
Taking care of your own needs and finding time to do the things you enjoy outside of your care partnership role is important. The success of a care partnership rests in mutual understanding, wellness, and respect.
Stronger Together
Care partnership keeps the person living with lupus at the center of their own story. They are an active participant leading the way in their own life’s journey, making decisions regarding their care, and inviting you to support them in ways that are most meaningful for them.
Together, you can navigate medical decisions, challenges, and changes that arise while living with lupus. Most importantly, you are not alone – the Care Partner Toolkit can support you and your loved one with lupus as you take this journey together.
In the Care Partner Toolkit, you’ll find:
- Information on what it means to be a care partner
- Defined care partner roles and ways to support your loved one with lupus
- Self-care strategies
- Forms to help you stay organized
- Links to additional resources for care partners
Explore the Care Partner Toolkit to find the resources and information you need to define and strengthen your care partnership. The work that you do each day in supporting your loved one with lupus matters – we are stronger together.
Authored by:
Heather Rose Artushin, LISW-CP
This blog post and the lupus resources found on the National Resource Center on Lupus are, in part, supported by the Centers for Disease Control and Prevention under Cooperative Agreement Number NU58 DP006139. The contents are solely the responsibility of the developers. Points of view or opinions do not, therefore, necessarily represent official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.
This blog post is for educational and information purposes only. Consult with your doctor/health care team for medical advice.