The Faces of Lupus: Stories Beyond the Butterfly Rash

When people think of lupus, they don’t usually think of the crushing fatigue, memory gaps, sudden weight gain, or hair loss they think of the rashes, specifically the butterfly rash that spreads across your cheeks and nose. It’s a prominent belief that lupus is merely a skin disease. However, when we unpack how lupus affects the body, we find that lupus symptoms run so much deeper than just rashes and skin imperfections.

*Disclaimer:

The information provided in this article is for general informational purposes only and is not intended as medical advice. It should not be used as a substitute for professional diagnosis, treatment, or advice from a qualified healthcare provider. Reliance on any information provided in this article is solely at your own risk.

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Lupus is an autoimmune disorder, which means the immune system will generate autoantibodies that attack your own tissue and cause inflammation. Cutaneous lupus, which is also called “skin lupus,” is a variant of lupus that affects only the skin. It might manifest as:

• Red, scaly areas of skin, especially on areas commonly exposed to the sun

• A rash across your face and cheeks in the shape of a butterfly

• Hyperpigmentation or hypopigmentation

• Skin itching, irritation, or swelling

However, this does not mean that the myth of lupus being only a skin disease is true, because there are several forms of lupus, and the most prominent one—systemic lupus erythematosus (SLE)—affects more than just the skin.

Sometimes, it can attack your organs. It’s not uncommon for people with SLE to also develop lupus nephritis, a variant of lupus that attacks the kidneys. In the case of Shadaiah (Shae) Forsey, whose story with SLE and lupus nephritis is shared on the National Kidney Foundation’s website, her kidneys were shutting down and leading to extreme stress on the rest of her body.

She stated, “My blood pressure was dangerously high. My heart was struggling to keep up. They started me on a diuretic to reduce fluid and make it easier for my heart to pump, but I wasn't doing well. My parents made the difficult choice to place me in a medically induced coma to save my life.”

Another account from Jessica Figueroa, who was similarly diagnosed with SLE and lupus nephritis, says that “I realized I was getting worse. I couldn't do simple things like cook or open jars, and I couldn't even maneuver my vehicle or drive. My lupus took over. It became very aggressive and attacked my kidneys because we didn't treat it quickly enough.”

Both Shae and Jessica were fortunately able to bounce back and recover from their fight against lupus however, it goes to show how harmful it can be when we see lupus solely as a skin disease. Lupus already mimics other diseases so well that constantly minimizing its severity as an autoimmune disorder can lead to improper diagnoses. As Jessica said, “Like kidney disease, lupus is not a disease that people can see. It's invisible–you look like nothing's wrong with you. People don't even see any type of problems with me until I'm in a hospital. To an average person, someone may look fine, but internally, they’re not okay.”

Aloma, who spoke about her neuropsychiatric lupus (lupus that attacks the brain) and whose story is on Lupus Trust, was suffering intensely from head and neck pain and constantly rushed in and out of the hospital. She was consistently getting positives for neuro-lupus, yet doctors were still hesitant to officially diagnose her.

“The neurologist kept saying it has to be neuro lupus, but he was not even sure about giving a one-hundred percent diagnosis. I had tested positive for all the other lupus tests and with that had ticked off all 11 of the lupus criteria,” she states in her story, “After many more months and many emergencies to the hospital emergency rooms, and re-admittances into week stays in the hospital my neurologist made a definite lupus diagnosis as my ANA was extremely high and each test showed it going higher and higher. More tests and more lupus positives. But still they decided to bring in a physiatrist - she would not hear of the lupus diagnosis and kept trying to ignore all the positive factors and diagnosis. By this stage, 5 months had passed, and my condition was worsening - intense and unbearable pain everywhere - intense headaches, skin rashes, mouth ulcers, intense sweating periods, fever, and still positive lupus results.”

Aloma is now on the path to recovery from her experiences with lupus, and she says that “It’s been a long, hard road, and I still have some road, and my mission is now to support the fundraising for this disease that does not get the recognition that it deserves and raise as much awareness about it as I can.”

Indeed, lupus is still understudied to this day, and we still have many questions about it. However, a good start to understanding lupus is understanding that it’s not just a skin disease, and acknowledging all the pain those with lupus have to go through that extends far past just rashes.

It’s a common myth that lupus is a skin disease however, this is not true. Lupus is an autoimmune disorder that comes in many forms, and while cutaneous lupus is a variant that only affects the skin, more common variants like systemic lupus erythematosus can severely affect organs such as the kidneys and brain. This belief can be counterproductive to getting lupus patients their proper diagnoses, and so the myth must be cleared up as soon as possible.

Cutaneous Lupus | Cleveland Clinic

Staying Positive with Lupus and Lupus Nephritis | National Kidney Foundation

The Ups and Downs of Living with Lupus and Lupus Nephritis– Jessica’s Story | National Kidney Foundation

Aloma’s Story | Lupus Trust