“If one day I say I have no pain, it is because I have died.”
For Sónia Mendonça, these are not words of hyperbole, but a clinical reality. A resident of São Vicente do Paul, Mendonça has spent the better part of her life in a tug-of-war with her own immune system. Her journey is a stark illustration of the invisible, often erratic nature of systemic lupus erythematosus (SLE), a chronic autoimmune disease that can attack nearly any organ in the body.
Mendonça’s story is one of endurance and the search for a name for her suffering. For years, her symptoms were categorized under a different diagnosis, leaving her to navigate a childhood of diminishing autonomy. Her experience highlights a common challenge in rheumatology: the overlap of autoimmune symptoms that can lead to diagnostic delays and prolonged patient distress.
As the medical community observes World Lupus Day on May 10, Mendonça’s testimony serves as a reminder that while medical advancements have made lupus manageable, the daily burden of chronic pain and systemic inflammation remains a constant for many patients.
The Diagnostic Maze: From Arthritis to Lupus
The path to a correct diagnosis is rarely linear for those with autoimmune disorders. At age seven, Mendonça was diagnosed with juvenile rheumatoid arthritis. For a decade, the joint pain and stiffness she experienced were attributed to this condition. However, the severity of her symptoms soon began to exceed the typical presentation of juvenile arthritis.
The loss of autonomy happened gradually but decisively. Mendonça recalls a time when she could no longer perform basic tasks. her godmother had to bathe her, and there were frequent days when she lacked the grip strength to hold cutlery to eat. These signs—extreme fatigue and profound joint dysfunction—suggested a systemic process more aggressive than localized arthritis.
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The crisis peaked at age 17, when Mendonça arrived at the emergency department of the Hospital de Santarém suffering from severe systemic edema, or swelling. This physical manifestation often signals that the kidneys are struggling to manage fluids, a common and dangerous complication of SLE known as lupus nephritis.
| Age/Period | Clinical Event | Medical Milestone |
|---|---|---|
| Age 7 | Onset of joint pain | Diagnosed with juvenile rheumatoid arthritis |
| Adolescence | Loss of motor autonomy | Symptoms attributed to arthritis |
| Age 17 | Severe systemic swelling | Emergency admission to Hospital de Santarém |
| Post-17 | Kidney biopsy | Confirmed Systemic Lupus Erythematosus (SLE) |
The Physical and Psychological Toll
Following her initial emergency admission, Mendonça was transferred to the Instituto Português de Reumatologia and subsequently to Hospital Curry Cabral in Lisbon. She remained hospitalized for nearly three months, from June 1 to the end of August—dates she describes as unforgettable markers of her life’s transition from a girl with “joint pain” to a patient with a lifelong chronic illness.
The definitive diagnosis came via a kidney biopsy, which confirmed the presence of systemic lupus. Along with the internal organ involvement, Mendonça also suffered from cutaneous lupus. This manifested as the characteristic “butterfly rash” (malar rash) across her cheeks and the bridge of her nose—a hallmark sign of the disease.
The psychological impact of the butterfly rash is often as taxing as the physical pain. Mendonça notes that while the mark has become more discreet over time, she still uses makeup to hide it before venturing into public. This habit speaks to the social stigma and the desire for normalcy that many lupus patients navigate daily.
Managing a Hyperactive Immune System
Because SLE occurs when the immune system mistakenly attacks healthy tissue, treatment focuses on suppressing that overactive response. For Mendonça, this began with sessions of chemotherapy. While commonly associated with cancer, certain cytotoxic chemotherapy agents are used in severe lupus cases to rapidly lower the immune response and prevent permanent organ failure, particularly in the kidneys.
Despite these aggressive interventions, the “baseline” for Mendonça remains one of pain. The volatility of the disease means that while the symptoms are now more controlled, they never fully disappear. This cycle of flares and remissions is a defining characteristic of the condition, requiring lifelong monitoring by rheumatologists.
Mendonça has found a way to survive the disease by channeling her suffering into art, transforming the isolation of chronic illness into a medium for expression. Her courage in sharing her story underscores a critical need for public awareness regarding the “invisible” nature of the disease—where a patient may look healthy on the outside while battling systemic inflammation internally.
Disclaimer: This article is for informational purposes only and does not constitute medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
The global medical community continues to prioritize the development of more targeted biologics to replace broad immunosuppressants, aiming to reduce the side effects of long-term steroid and chemotherapy use. The next major milestone for lupus advocacy and research is the continued push for earlier diagnostic protocols to prevent the kind of multi-year uncertainty experienced by patients like Mendonça.
Do you or a loved one live with an autoimmune condition? Share your story or leave a comment below to help build a community of support and awareness.
