LUPUS AND CAREGIVING
Getting a life-changing diagnosis can be daunting for both an individual with lupus and their caregiver. Affected people must be able to communicate with their caregivers exactly how they feel and how they want to be taken care of.
To be a competent caregiver, you must first comprehend what lupus is. What is Lupus?
Systemic Lupus erythematosus is an autoimmune disease that occurs when the body’s immune system attacks its tissues. It can affect the joints, blood cells, heart, lungs, and kidneys in the body. It is a long-term disease that most commonly causes arthritis, rashes, inflammation, fatigue, and swelling(1). Lupus is also known as the great imitator because it is often mistaken for other health issues due to its wide range of symptoms.(2)
Caregiver’s Role In The Management Of Lupus
As a caregiver, you need to be conscious of how lupus affects your loved one; physically, mentally, and emotionally. Changes occur all the time in their symptoms and physical needs which play a huge role in their moods and mental states. Ensure you observe the signs and symptoms of lupus, so you do not miss any vital information.(3)
With all the changes that occur with someone with lupus, communication is key. keep up a positive attitude and use your communication skills to make the right choices. Communicate with friends and other family members so they can help when the need arises.It is also important that patients living with lupus can communicate their feelings and how they want to be treated to their health caregivers
Health Equity and Lupus
To address health equity in lupus, we need to understand the cause of disparities in the treatment of lupus. The health disparity is the differences in the prevalence, mortality, incidence, and burden of disease that exist among specific demographics and populations. In the case of lupus, the clinical presentation shows a difference in disease popularity based on ethnicity, gender, and race:(4)
- Women are nine times more disposed to develop lupus than men
- Black women are three times more likely to have lupus than White women
- Asian, Hispanic, and Alaskan Native/American Indian populations are more likely to develop lupus
Belonging to an ethnic and racial minority has shown to be a risk factor for poor outcomes in the management of lupus.
The lack of representation of these vulnerable populations in lupus clinical trials further sustains the disparities. The root cause of this disparity in SLE treatment, incidence, and outcomes have led to the under representation of marginalized populations in lupus clinical trials.(5) We need to raise awareness for equitable care and the same level of access to health care despite the health disparities.
Caregiver Empowerment Resource
Learn more about the impact of Lupus on patient-provider communication from patient advocate Estela Mata, President, and co-founder of Looms for Lupus. Estele shared her journey as a caregiver to her sister through her lupus journey, having to navigate multiple communication barriers with healthcare teams that made it difficult for her to get appropriate access to care.