The Many Faces of Lupus: How One Disease Can Affect the Skin - and the Mind

Written by: Nektaria Riso

Reviewed by: Katie Kugler and Ethan Bendayan Introduction

Lupus has been in the spotlight more than ever recently, but this disease is far from new. In fact, it was first mentioned by Hippocrates 2,000 years ago. This condition’s name ‘lupus’ is Latin for ‘wolf’ because was its characteristic facial lesions were thought to resemble wolf bites or scratches. Over the centuries, various physicians have studied lupus, but it was William Osler who recognized the disease as going far beyond the skin, capable of affecting the whole body. However, it was only in the 1950s, with the game-changing discovery of antinuclear antibodies, that we could classify lupus as an autoimmune disorder. 

What is Systemic Lupus Erythematosus?

SLE is a chronic multisystem inflammatory and autoimmune disease whose manifestations are incredibly variable. They can range from mild like fatigue to life-threatening such as kidney complications and vasculitis (inflammation of the blood vessel walls). SLE is the most common (and most serious) type of lupus and accounts for 70% of cases. 

Other subtypes of lupus include:

1. Discoid lupus erythematosus (DLE) and cutaneous lupus (CLE): only the skin is involved, sparing the internal organs.

2. Drug-Induced Lupus (DIL): symptoms are caused by certain medications and resolve when they are stopped.

3. Neonatal Lupus: a temporary condition in newborns, exposed to maternal autoantibodies (immune proteins that attack healthy tissue).

Skin manifestations are often the first symptom of SLE, as skin involvement affects 80% of patients with SLE. In fact, it has been coined as the disease of ‘1,000 faces’ because each patient’s skin is affected differently. 

Some cutaneous manifestations include:

• A butterfly-shaped rash across the nose and cheeks that spares folds around the nose

• Mucosal ulcers or sores (e.g., mouth sores)

• Discoid rashes: disc-shaped thick scaly patches on the scalp and face

• Photosensitivity or sun sensitivity

• Hair loss

• Nail changes

• Raynaud’s disease (when blood vessels in extremities narrow in response to cold or another stimulus, causing the skin to turn white/blue, become numb, and feel cold)

What causes SLE?

Similarly to other autoimmune disorders, the body produces antibodies against its various organs, attacks them, and damages them. There are usually flare-ups and then periods of remission. Unfortunately, the cause is not fully known, but many believe it is due to a complex interplay of genetic and environmental factors that enhance the immune system. Hormones are also thought to play a role because women are most affected by this condition. 

The Epidemiology of SLE

Systemic lupus erythematosus (SLE) is considered a rare disease in Canada, affecting about 1 in 1,000 people. While rare, it has a striking pattern: around 90% of those diagnosed are women, particularly between the ages of 15 and 45. In fact, women in this age group are up to 9 times more likely to develop lupus than men. The disparity doesn’t stop there with women of colour being 2 to 3 times more likely to be affected.

How Do We Treat SLE?

Unfortunately, there is no cure for lupus. Treatment consists of managing and preventing flares, reducing organ damage, calming inflammation and the immune system. Many practitioners recommend keeping a diary to document triggers of flare-ups and committing to lifestyle changes such as healthy eating, stress management and daily physical activity. 

Medications are used to slow organ damage or to calm the body’s inflammation. For people with skin involvement, steroids can be taken orally or applied as creams to rashes. Antimalarials (drugs used for malaria) have been shown to protect the skin from UV rays along with adequate sun protective strategies such as sunscreen, limiting sun exposure and wearing protective clothing. Drugs that supress the immune system can also be used including calcineurin inhibitors and methotrexate to dampen an overactive immune system.

The Psychological Burden of SLE Runs Deeper Than the Skin

The psychological impact of systemic lupus erythematosus (SLE) is significant, and yet often underestimated. Many people report a lower quality of life, and this is especially true for those with visible skin lesions. Despite these skin lesions not always been painful, they still can deeply affect self-esteem and body image. Many people avoid being photographed or looking in the mirror because of the way they feel about their skin. Some individuals go as far as to avoid social situations entirely out of fear of being stared at, rejected, judged, or asked uncomfortable questions about their lesions. Patients see their lesions as outwardly ‘marking’ them as different. This can lead to social anxiety, self-imposed isolation, and a loss of confidence to engage in both personal and professional spaces. These skin manifestations may even discourage people from starting new friendships or pursuing romantic relationships. Even within existing relationships, these changes can create tension if loved ones do not fully understand the emotional impact of SLE.

The photosensitivity associated with SLE further restricts daily life, as patients are often forced to limit their time outdoors, contributing to their feelings of disconnection from people and the world around them. Activities that may seem harmless to us such as eating on a restaurant’s outdoor patio or exploring a new city on a sunny afternoon can be a significant challenge for those living with SLE. These restrictions can reinforce a sense of exclusion from peers, intensifying the feelings of isolation already driven by visible skin changes. For young adults in particular, the inability to freely participate in social and recreational activities can feel especially alienating and can have long-term consequences on social development and relationships.

Unsurprisingly, the psychological burden of these challenges often manifests as mood disorders. Depression and anxiety are highly prevalent in people with SLE, affecting around 25 to 60% of patients depending on the study. Women are especially vulnerable to mood disorders due to a complex mix of hormonal and social factors. The unpredictability of flares, the everyday struggle of chronic pain, the persistent fatigue, and numerous physical changes can create feelings of helplessness, frustration, and grief for the life they used to have before their diagnosis. Studies have found that up to one third of people experience suicidal thoughts, and around 3% report suicide attempts. These numbers highlight that the emotional burden of lupus is significant, and as such, these people require additional support to cope with their diagnosis and the highs and lows of their journey with SLE.

Despite the high prevalence and impact of these struggles, depression and anxiety are often underdiagnosed. Patients may not openly share their struggles due to stigma, or their emotional symptoms may be overshadowed by the physical aspects of the disease during medical visits. This highlights the need for healthcare providers to look beyond the physical disease and to routinely screen for emergence of mental health issues. Cognitive-behavioral therapy (CBT), mindfulness programs, referrals to peer support groups, and appropriate medication can make a real difference in the treatment of SLE. Addressing the toll this disease has on one’s mental health can improve one’s quality of life, treatment compliance, and overall long-term health outcomes. For people living with SLE, feeling seen and supported can be just as healing as a new prescription.

Being newly diagnosed with SLE is one of the hardest moments of people’s journey. As such, many initiatives have been proposed and explored to assist in the transition into a new life with SLE. Research has shown that multidisciplinary, psychoeducational programs are effective in improving the quality of life of people newly diagnosed with SLE. These programs led by community nurses and allied health professionals help patients better understand their disease, modify their lifestyle and improve adherence to new daily medications. There is a strong focus on stress reduction, self-advocacy, and on community support. Patients who participate in these programs often report greater resilience and improved ability to cope with the daily realities of SLE.

Knowledge truly is power when it comes to navigating SLE. Directing patients to reputable organizations like Lupus Canada gives them access to trusted resources, simplified educational materials, and ways to join support groups near them. Importantly, connecting with others who also live with SLE can provide a sense of validation and belonging. Peer support groups, whether in-person or online, offer safe spaces where individuals can share their experiences, learn coping strategies, and find comfort in knowing they are not alone. Over time, a strong support network reduces isolation, fosters resilience, and helps patients reframe their identity around their new disease.

Ultimately, the skin manifestations of lupus represent more than a symptom; they are a visible reminder of an invisible disease. Their psychological and social impact can ripple across every aspect of life, influencing relationships, self-esteem, and even opportunities for work. Recognizing and addressing this reality is critical for healthcare providers to better care for patients with SLE. A holistic approach that combines medical treatment with psychosocial support and community connection can transform the way patients experience their illness. By validating both the visible and invisible struggles of SLE, we move closer to healing not only the body but also the mind.

Key Takeaways

Systemic lupus erythematosus is much more than just a skin disease: it can affect many parts of the body and have a real impact on daily life. While there’s no cure, treatments and lifestyle changes can make a big difference in controlling symptoms and protecting long-term health. Just as important, we need to remember the emotional side of living with lupus. Support, understanding, and education can help patients feel less alone and more in control of their ups and downs of their journey with SLE.

References

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Lupus and your skin: Signs and symptoms. American Academy of Dermatology. (n.d.). https://www.aad.org/public/diseases/a-z/lupus-symptoms

Sakr, B. R., Seif, E. M., Kamel, R. M., & Eleishi, H. H. (2022). Impact of psycho-educational therapy on disease activity, quality of life, psychological status, treatment satisfaction and adherence in systemic lupus erythematosus patients. The Egyptian Rheumatologist, 44(4), 313–317. https://doi.org/10.1016/j.ejr.2022.04.001

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Zhang, L., Fu, T., Yin, R., Zhang, Q., & Shen, B. (2017). Prevalence of depression and anxiety in systemic lupus erythematosus: A systematic review and meta-analysis.BMC Psychiatry,17(1).https://doi.org/10.1186/s12888-017-1234-1