Support for Care Partners

You play many roles in supporting your loved one: butler, chauffeur, medical advocate, cheerleader, listener, therapist, housekeeper, and childcare provider, to name just a few. Sometimes it may feel like you're not doing enough; other times, like you lack the energy to do more. As a care partner, you understand that 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.

Another way you can help? Go with your loved one to doctor's appointments. Healthcare visits can feel overwhelming to a person living with a chronic illness. By attending appointments with your loved one, you not only add valuable moral support, 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.

Ways to Support 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 chronic illness. To support yourself:

  • Talk to someone (a therapist, other 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
  • Visit the Lupus Foundation of America Caregiver Support page for more information and resources specifically for care partners

Care Partner Perspectives

Care Partners:

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The following are quotes from people caring for loved ones with lupus nephritis. Read on to learn more about their personal stories.

On challenges

It was an unknown to us... It's nothing you can plan for.

Lizann, mother of a daughter showing signs of lupus nephritis

“I wanted to cry. I couldn't do it. I wanted to break down. I couldn't do it because if he wasn't doing it I didn't feel like that I deserved to do it. He was going through this mentally, physically, and emotionally. I was just going through this emotionally.”

Pam, care partner of Nas diagnosed with lupus nephritis in 2017

On care and support

[As a care partner], I feel like I have to be that person to a) listen; and b) get them through. To be the rock...

Nittin, spouse of a person living with lupus nephritis

I'm a super-optimistic guy. A see the glass-half-full kind of guy. She's a bit more even keel... sometimes, she needs that extra little push to see the bright side of things.

Antione, spouse of a person living with lupus nephritis

Advice for new care partners

Once I was diagnosed with lupus nephritis, it became very clear that I needed the support of my husband. I needed the support of my family members to figure out how we are going to make the accommodations we needed to change the course.

Sara, diagnosed with lupus nephritis in 2004

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