I Care for Someone with Lupus (Adult)
If someone you love has lupus, you know that living with lupus brings challenges not only for them but also for their friends and family. But you are not alone in this fight, and although it may be demanding at times, there are ways to offer support while also protecting yourself from stress and burnout.
You can begin building your support network today by exploring the resources and programs available to help you and your loved one navigate this journey together.
Understanding Lupus
Learning about lupus can help you understand what your loved one is experiencing. Lupus is a chronic (long-term) autoimmune disease that can cause inflammation (swelling), fatigue, joint pain, rashes, and other symptoms that may come and go with flares. Healthy habits like stress reduction, exercise, good sleep, and a balanced diet can help manage symptoms.
Treatments focus on reducing inflammation, preventing flares and improving quality of life, and ongoing research continues to bring new options. You can support your loved one by understanding their treatment plan and helping them stay prepared, such as creating a “flare bag” or “go bag” for tougher days. With the right knowledge, you can make a difference in their daily comfort and care.
If you are new to lupus caregiving, learning about lupus symptoms, flare triggers and available treatments can help you feel more confident and better prepared to support your loved one.
Figuring out Your Role
Learning about the different roles of caregiving can help you understand the support your loved one may need. A caregiver typically provides hands-on assistance with daily tasks, while a care partner often shares responsibilities and decision-making with the person living with lupus.
Every caregiving role is important — whether you’re a parent caring for a child with lupus or a spouse or friend supporting an adult. Each situation comes with unique emotional challenges, and it’s normal for your role to evolve over time as needs change.
Finding Practical Ways to Help
As a care partner for someone living with lupus, you’ll find many ways to offer support—and one of the most practical is helping them connect with the right resources.
Help also comes from tailoring your actions to what your loved one needs. That might mean offering encouragement and a listening ear, stepping in to help with chores or simply being present when they’re navigating a tough day. Choosing what to offer based on their preference and energy levels shows both respect for their autonomy and a commitment to partnership.
Practical support may also include helping track symptoms, organizing medications, attending appointments or learning how to respond during a flare. Small acts of support can make a big difference.
Maintaining Your Relationship
Supporting someone with lupus means staying connected and informed. Preparing together for doctor’s appointments — like writing down questions and tracking symptoms — helps you both feel confident and aligned. It’s also important to understand what kind of support your loved one wants, and that may change during lupus flares, stressful periods or medication adjustments.
It’s normal to feel guilt or uncertainty at times, but focusing on open communication and shared goals can help strengthen your relationship. Getting involved in the lupus community or participating in advocacy can also give you a sense of purpose together. By planning ahead and checking in regularly about each other’s needs, you can continue to build a strong partnership while navigating lupus side by side.
Caring for Yourself
Caring for someone you love can feel overwhelming at times, and you may want to take on every task to make their life easier. But communication and balance are key — care partners are most helpful when they encourage and empower their loved one to stay involved in their own care.
Being a cheerleader and a steady source of support matters, but so does setting healthy boundaries to protect your own well-being. Practicing self-care, whether through breaks, hobbies or connecting with others who understand, helps you stay strong and present — for yourself and the person you care about. Care partners who prioritize their own rest and emotional health are better able to provide long-term, sustainable care.
It may be difficult to find other care partners who understand the challenges and joys of loving someone with lupus. That can lead to loneliness and feeling isolated, which adds even more stress to daily life. A care partners support group can help by giving you a safe place to find community and friendship.
It’s worth saying again, because it truly matters—you are not alone. Your loved one’s lupus journey is your journey too. The Lupus Foundation of America will be with you all the way.