Personal Stories: Living with Lupus Nephritis
Hear from others who are living with lupus nephritis as they share their challenges, discoveries, and triumphs in the videos below.
diagnosed with lupus nephritis in 2018
"What I have learned through living with lupus and lupus nephritis is that perspective, and self-talk is life. Even though I've got this rain cloud following me, I never turn away the opportunity to be someone's sunshine. These are the things that keep me out of my head."
Caring for your loved one (and yourself)
Being a care partner can be a rewarding experience—but it does come with its own set of challenges. You may be able to help your loved one by attending doctor’s appointments with them. One of the best ways to support the person in your life living with lupus nephritis is to recognize the signs that your loved one is not feeling well.
Nas, diagnosed with lupus nephritis in 2017, and his care partner, Pam
It can also help to go with your loved one to doctor's appointments. Healthcare visits can sometimes feel overwhelming to a person living with an illness. By attending appointments with your loved one, you not only add valuable moral support, but you also can ask questions, take notes and provide additional information to the doctor or specialist. At the end of the day, one of the best ways to support your loved one is to simply listen. Oftentimes, listening can be just as helpful, if not more so, than offering advice.
Taking care of yourself
As you care for your loved one, don't forget to pay attention to your own needs. Care partner burnout is a fairly common occurrence among those caring for someone with a disease.
To support yourself:
- Talk to someone—friends, family, a therapist, another care partner, support group member—about how you're feeling
- Set reasonable expectations for your lifestyle, knowing that flexibility is key when supporting a loved one living with lupus nephritis
- Have outlets for your own physical, mental and emotional wellbeing, such as meditation or exercise
- Communicate your own needs in a clear, assertive, and constructive manner
Care partner of Nas, diagnosed with lupus nephritis in 2017
"I wanted to cry. I wanted to break down. I couldn't though, because if he wasn't, I didn't feel like I could. He was going through this mentally, physically, and emotionally. I was just going through this emotionally."
Resources for care partners
Beyond My Battle aims to reduce the stress of serious illness, rare disease, and disability through emotional support and educational resources rooted in mindfulness, awareness and compassion.
The Lupus Foundation of America provides additional information and resources specifically for care partners.
Get a guide for care partners.
Caring for someone with lupus nephritis can be overwhelming, but you're not alone. The Lupus Nephritis Awareness Kit offers support for both you and your loved one, along with other helpful resources.Get Your Kit
Connect with our community
If you're looking for more information about lupus or lupus nephritis, or you want to connect with other members of the community, the following groups may be able to help.
Please note that Aurinia does not endorse or monitor the activities and content of advocacy groups, their websites, or third-party online communities.
Do you know of any other lupus or lupus nephritis groups that may be missing from this list? Let us know.