Caring for the Caregiver: What You Need to Know

Lupus caregivers can also feel the strain of living with a chronic illness, often neglecting their own well-being while being attentive to others. So how can caregivers make sure to get the care they need?  Read on to find out.

Introduction to Lupus and Caring for the Caregiver

Caregivers are the backbone of any lupus support system. While caregiving can be rewarding and strengthen relationships, it can also become overwhelming at times. A U.S. study revealed that caregivers often rate their own health as only fair or even poor due to providing care to others for extended periods.

For a lupus support system to work, everyone has to look out for each other.  Those with lupus and their caregivers must be able to honestly acknowledge and understand the signs of stress and address each other’s needs to build resiliency for the tough times.

How can those with lupus support caregivers?

There are things that those with lupus can do for their caregivers not only to show gratitude but to show solidarity – both are in the lupus battle together. This includes:

  • checking in on the caregiver regularly to ask how they are doing;
  • encouraging caregivers to engage in honest dialogue about mutual needs and limitations;
  • designating a backup caregiver or arrange for occasional respite services;
  • giving as much notice as possible to caregivers when needed; and
  • understanding and accepting that a caregiver may have to say no at times – avoid taking it for granted that a caregiver is always available.

When appropriate, asking the caregiver to attend lupus support groups, advocate, and learn more about lupus together can help increase awareness and understanding of the toll lupus can have on everyone.

How can caregivers practice self-care?

It may seem impossible to focus on self-care, but it is necessary. The first step is acknowledging changes in health and well-being, which may include:

  • feeling anxious, overwhelmed, or depressed;
  • being tired all the time and not getting good sleep;
  • gaining or losing too much weight;
  • changes in appetite or eating habits;
  • being easily angered and irritated;
  • experiencing inexplicable aches and pains;
  • drinking too much alcohol; and
  • feeling isolated, invisible, or unrecognized.

The second step is to practice self-kindness by remembering:

  • nobody is perfect, and everyone has limitations;
  • everyone has a right to feel what they feel;
  • it is okay to say no; and
  • it is perfectly acceptable and appropriate to ask for help.

Lastly, there are things to do to make life a little easier, including:

  • setting realistic expectations and focusing on what can be done;
  • learning as much as possible about SLE and what to expect;
  • becoming comfortable saying no and asking for help;
  • seeking social support;
  • networking with other caregivers through in-person or online support groups;
  • building coping skills and seeking mental health therapy as necessary; and
  • working with a healthcare practitioner to set health and wellness goals.

In Conclusion

A Google or Facebook search can reveal additional resources for caregivers, including advocacy groups, caregiver support groups, and education. There are even books about caregiving that can provide insight into the caregiver experience. No one should feel alone on the lupus journey, including caregivers!


Caregiver statistics: Demographics. (n.d.). Family Caregiver Alliance.

Caregiver stress: tips for taking care of yourself. (n.d.). The Mayo Clinic.

Edwards, V., Bouldin, E., Taylor, C., Olivari, B., & McGuire, L. (2020). Characteristics and health status of informal unpaid caregivers – 44 states, District of Columbia, and Puerto Rico, 2015-2017. Morbidity and Mortality Weekly Report, 69(17), 183-188.

Ormel, I., Law, S., Abbott, C., Yaffe, M., SaintCyr, M., Kuluski, K., Josephson, D., & Macaulay, A. (2017). When one is sick and two need help; caregivers’ perspectives on the negative consequences of caring. Patient Experience Journal, 4(1), 66-78.

The National Alliance for Caregiving. (n.d.).

Tur-Sinai, A., Teti, A., Rommel, A., Hlebec, V., & Lamura, G. (2020). How many older informal caregivers are there in Europe? Comparison of estimates of their prevalence from three European surveys. International Journal of Environmental Research and Public Health, 17(24), 9531.


Author: Liz Heintz

Liz Heintz is a technical and creative writer who received her BA in Communications, Advocacy, and Relational Communications from Marylhurst University in Lake Oswego, Oregon. She most recently worked for several years in the healthcare industry. A native of San Francisco, California, Liz now calls the beautiful Pacific Northwest home.

All images, unless otherwise noted, are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus.

All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.


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