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:

The biggest challenge/adjustment for us is how much the diagnosis has changed our life plans. Many areas of our life such as travel plans, personal time together, and family planning have been affected.

Antione, spouse of person living with lupus nephritis

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

Lizann, mother of a daughter showing signs of lupus nephritis

I have had to give up on routine and have learned to be extremely flexible.

Nittin, spouse of a person living with lupus nephritis

On offering care and support:

I do my best to help her manage her pain by giving her massages, letting her rest, taking care of the housework and other chores, etc.

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 person living with lupus nephritis

[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

Advice for new care partners

[My advice is] to be in it for the long run, as well as to always be conscious of the fact that the person has an autoimmune disorder, which means there will be times when they don't look sick but are in a lot of pain. That at times it's up to us caregivers to be mindful of this, because the rest of the world will not.

Nittin, spouse of a person living with lupus nephritis

Be patient. The process from being newly diagnosed to a livable solution takes time. There are adjustments and accommodations that will need to be made by both caregiver and the one who's been diagnosed.

Antione, spouse of a person living with lupus nephritis

I would tell them to be patient, compassionate, understanding, and most of all flexible.

Nittin, spouse of a person living with lupus nephritis

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