• Introduction: How Society “Constructs” Illness
• The Social Construction of Lupus
• So, What Can We Do?
• In Conclusion – It Takes a Community!

  

Introduction: How Society “Constructs” Illness

It is easy to think that being “sick” or “healthy” is just a matter of lab tests and a medical diagnosis, but they also represent labels that are defined by a society.   They are constructed by cultures, influenced over time and history, amplified by the media, and turned into memes on social platforms.  Being sick also reflects the unspoken rules of the communities we live in.  Society itself has expectations of how you should look and act as someone with a disease, a medical condition, or disorder.

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In other words, illness is not only a biological experience; it is a social one, too!

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What’s more, being sick is not just an experience for the person who is ill.  It is a condition that impacts all sorts of relationships with family, friends, coworkers, and even medical staff, as well as everyone we meet in school, religious gatherings or every day activities like shopping or going to restaurants.

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So, sickness is not just a personal experience; it is a social one, too!

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When we only view illness through our own, personal lens, it becomes easy to misread, dismiss or even resent others who don’t look or act the way we expect – they “just don’t understand!”

When someone is sick—especially with an illness like lupus—it challenges social roles and expectations. A parent may not be able to care for their children in the same way. A student may struggle to meet deadlines. A partner may become a caregiver. Illness is never just physical; it is deeply relational.

Additionally, some diseases may have particular cultural meanings with strong social or even moral biases such as cancer, HIV/AIDS or even obesity.

Lupus, unfortunately, is a classic example of a disease where the personal experiences of those living with lupus often don’t match the expectations of society in general … or even the people closest to them.

What can this mean for you and society – and what can be done about it?  Read on …

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The Social Construction of Lupus

If you have lupus, you have probably also felt the social pressure to meet the expectation of those who do not understand what you are going through.  Though research is adding to the knowledge of lupus every day, it is still underappreciated and misunderstood by most people in society.

Lupus, as a disease, also challenges many of the unspoken rules that people tend to associate with illness:

• It is invisible – “Why are you always tired; you don’t look sick!”
• It is unpredictable – “You were fine yesterday; why can’t you go out today?”
• It is complex – “It’s like you complain about something new every day!”
• It attacks everyone differently – “I knew someone with lupus, and they didn’t seem to have your problems.”
• It is incurable – “When are you going to get better?”

Because lupus doesn’t follow a script people recognize, those living with it are often met with disbelief, skepticism, or the pressure to downplay how much they are struggling.  Friends may expect full participation in social plans because “you look okay.”  Employers or coworkers may question the need for time off. Even healthcare providers can unintentionally dismiss concerns or downplay symptoms if tests come back normal.

This ongoing disconnect between lived experience and external perception can take an emotional toll. Many with lupus report feeling isolated, invalidated, or guilty for not meeting the expectations of others. Over time, this can lead to frustration, shame, and a sense of invisibility.

The emotional cost of this disbelief is heavy—loneliness, guilt, frustration, and internalized shame are common for those living with lupus.

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So, What Can We Do?

It is important to know – and for everyone else to appreciate – that you are not responsible to educate everyone about lupus.  Those expectations are too much when you are also managing yourself.  However, you also can’t expect everyone to understand what you are going through – just to be understanding.

Changing how we (and others) think about illness starts with small, intentional steps. Here are some things you can do, and some suggestions you can give to others in your life, in order to shift the narrative around lupus and other invisible conditions.

Things you can do;

1. Listen to Their Questions: Listening is a two-way street. Try to understand how they may have formed expectations around your lupus.  It might help you educate them more successfully and with compassion.
2. Provide Accurate Information: Educate yourself about your own condition enough to be able to explain it to others.  Autoimmunity is not contagious and it is not cancer.  It is complex and unpredictable and often invisible.  Have them check out sources of information like KFL articles, videos and websites.
3. Share Your Personal Story: The more people hear directly from YOU about living with lupus, the more it is appreciated and humanized.  You don’t need to share everything – all of the time – all at once.  Just be authentic and honest.
4. Support Organizations: Join organizations like KFL and support their educational efforts to tell the lupus story!

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Positive suggestions that you can give others:

1. Listen and Believe: Ask them to listen when someone shares their experience with lupus, and believe them. Remind them that they don’t always need to see symptoms in order to validate them.
2. Educate, Educate, Educate: Ask them to take the time to learn more about lupus and its other similar illnesses. Have them follow the social media posts and websites of advocacy groups like KFL in order to expand their awareness beyond surface-level knowledge.
3. Avoid Making Assumptions: Ask them to avoid comments like “But you don’t look sick” or “You were fine yesterday.” Instead, suggest that they ask how they can support you in whatever way you need now.
4. Advocate for Inclusion: Ask them to support school or work place accommodations for people with chronic illness.
5. Challenge the Narrative: Tell them that when they hear someone dismiss another person’s illness, they could gently challenge it, saying “everyone experiences illness differently” or “not all symptoms are visible.”

Again, you are not responsible for educating everyone and you don’t have to do everything, all at once.  Each small step can make a difference and plant the seeds for change that will help everyone.

References

Charmaz, K. (1991). Good days, bad days: The self in chronic illness and time. Rutgers University Press.

Conrad, P., & Barker, K. K. (2010). The social construction of illness: Key insights and policy implications. Journal of Health and Social Behavior, 51(1_suppl), S67–S79. https://doi.org/10.1177/0022146510383495

Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Prentice-Hall.

National Institute of Arthritis and Musculoskeletal and Skin Diseases. (2023). Lupus: Overview. U.S. Department of Health and Human Services. https://www.niams.nih.gov/health-topics/lupus

Scambler, G. (2006). Sociology, social structure and health-related stigma. Psychology, Health & Medicine, 11(3), 288–295. https://doi.org/10.1080/13548500600595173

Werth, B. P., & Fitzpatrick, R. (2018). Invisible disability and chronic illness: Negotiating identity and stigma. Disability & Society, 33(1), 1–22. https://doi.org/10.1080/09687599.2017.1371243

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Author: Greg Dardis, MS      

Professor Dardis was the Chair of the Science Department at Marylhurst University and is currently an Assistant Professor at Portland State University and the American College of Healthcare Sciences.  His focus has been human biology and physiology with an interest in  autoimmunity.  Professor Dardis is also a former President of the Board of Directors of Kaleidoscope Fighting Lupus.

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.