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Living with Lupus

Social Determinants of Health and Lupus

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Again, and again, research shows that the environment that one lives has a significant impact on health — just like genes or your diet — when it comes to lupus.

Lupus is an autoimmune disease caused by inflammation in the body. As such, it is heavily affected by a person’s environment. A stressful environment can trigger flares and ramp up symptoms.

However, it goes far deeper than “just” stress. Employment, education, socioeconomic status, and access to help and support systems all play a major role in the lives, health, and disease course of people with lupus.

Generally, social determinants of health are grouped into 5 key areas:

  1. Economic stability
  2. Education access and quality
  3. Health care access and quality
  4. Neighborhood and built environment
  5. Social and community context
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Diving into these broad categories, a number of crucial factors come into play including:

  • job opportunities
  • housing
  • factors of a neighborhood including the safety and pollution level
  • exercise opportunities (including access to facilities)
  • personal traits like education, race, and literacy skills
  • exposure to violence
  • discrimination and racism

All of these factors and more influence health outcomes.

There are other factors of course, and times of economic instability and social unrest can cause additional challenges. However, the idea of the social determinants of health boils down to the idea that social inequalities affect health outcomes and that the whole life of a person contributes to how their disease manifests.

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How do Social Determinants of Health Affect lupus?

Unfortunately, not only are these social determinants of health rarely addressed by the medical world, they can also directly interfere with medical advice. After all, if the air in the neighborhood is polluted or if it’s unsafe to walk through the streets, it may not be possible to, say, exercise without adding significant costs.

Food deserts are areas that don’t have grocery stores or other fresh fruit and vegetables. If a person doesn’t have access to a variety of nutritious foods, or the money to afford healthy ingredients, then changing their diet to something less inflammatory may be difficult. Reducing stress and preventing flares can be difficult if flare triggers are a part of the job. Or if a person with lupus faces regular and constant discrimination due to their race, sexuality, or gender.

Research looks at ways that the social determinants of health control the emergence and severity of lupus symptoms and, one day, may lead to better methods of controlling the disease.

This research has found, definitively, that a lack of validation is a social determinant of health that, while not frequently talked about, can seriously affect people with lupus. In other words, it is stressful, even harmful, to not feel listened to.

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The impact of not being listened to can even extend to the clinic where many women report not being adequately listened to by their doctors. “It’s all in your head” is an unfortunate, and unacceptable refrain that many women have heard from their clinicians. 

Lupus is a disease that disproportionally effects African American women, who face both racial and sex-related discrimination. SLE itself can contribute to discrimination. It interferes with activities of daily living (e.g., chores) and participation in activities throughout life. Unfair treatment is linked to increased stress and worse medical care, which leads to worse health outcomes.

The fatigue and pain of lupus also interferes with a person’s societal roles. This can make it more difficult to do things that a person needs or wants to do. Friends and family often do not understand that advising against fatiguing activities can also increase feelings of inadequacy or alienation. Culture and the needs of the family can affect how intently a person feels this way, and are major barriers to the self-management of lupus.

 

Solutions to Major Social Barriers

When hospitals or other organizations offer general life-related support to people with lupus, their health improves! In a study on how social determinants of health affected the care and health of people with lupus, they found that 57% had poor access to these social determinants of health. These people did worse than people who did not report having these issues.

The solution to this problem was to connect people to additional resources. This can include social work, mental health care, elder care, and transportation to appointments or work. Assistance with insurance plans, housing, and food stamps were also seen to help people with lupus.

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For more information:

People with lupus should try to secure basic health needs like nutritious food, a healthy sleep schedule, and even stress-relieving hobbies. These can be difficult to manage, but it’s worth looking into support and aid to make them happen.

For people with lupus who don’t want to, or can’t, leave work or school, asking for accommodations – such as flexible schedules, note takers, organization apps, special tools or protective equipment, and screen readers – can help restore balance to their lives.

Comments (1)

One thought on “Social Determinants of Health and Lupus

  1. What a well-written article! Thank you Anna and Lupus Corner for the standard of your content. It’s heartening to see rising awareness about the social and environmental effects on lupus, but until national/regional/individual healthcare systems or providers give the disease more recognition – let alone the factors that affect its outcomes – then the onus is still on the ill patient to research and attempt to access additional resources. I’m in New Zealand. Our public healthcare system really struggles with lupus diagnosis and management. It took nearly 8 years to be diagnosed (unbelievable lack of validation – s in your article), yet I still feel invisible. We also have a shortage of rheumatologists – especially good ones.

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