The Invisible Battle: Understanding Lupus Beyond the Symptoms

By Quratul Ain Arshad

Imagine waking up every morning feeling exhausted despite a full night’s sleep. Your joints ache, your hair begins to fall out, and recurring fevers interrupt your daily routine. Friends tell you that you are simply overworked, while others suggest stress or anemia. Months turn into years before you finally hear the words, “You have lupus.” For thousands of women around the world, including many in Pakistan, this is not an imaginary story but a daily reality.

Every July, Chronic Disease Awareness Month reminds us that millions of people live with long term illnesses that often remain invisible despite profoundly affecting their daily lives. Among these conditions is systemic lupus erythematosus (SLE), commonly known as lupus, a chronic autoimmune disease that disproportionately affects women and remains one of the least understood illnesses worldwide, including in Pakistan.

Autoimmune diseases occur when the immune system mistakenly attacks healthy tissues instead of protecting the body from infection. More than 80 autoimmune diseases have been identified, and according to the American Autoimmune Related Diseases Association (AARDA), nearly 80% of people living with autoimmune diseases are women. Lupus is among the most complex because it can affect almost every organ in the body, including the skin, joints, kidneys, heart, lungs, and most importantly brain.

Often called “the great imitator,” lupus presents with symptoms such as persistent fatigue, joint pain, fever, hair loss, skin rashes, mouth ulcers, and sensitivity to sunlight. Because these symptoms resemble those of many other illnesses, diagnosis is frequently delayed. According to the Centers for Disease Control and Prevention (CDC), approximately 9 out of every 10 adults diagnosed with lupus are women, most commonly between the ages of 15 and 44. Early diagnosis and appropriate treatment can significantly improve quality of life, yet awareness remains alarmingly low.

This challenge is particularly evident in Pakistan. A study conducted at Fauji Foundation Hospital, Rawalpindi, found that only 17.3% of patients had adequate knowledge about lupus, highlighting a substantial gap in awareness even among those already living with the disease. Research involving 388 Pakistani patients found that many initially sought medical care for fatigue, joint pain, fever, and skin related symptoms, complaints often mistaken for stress, viral infections, or nutritional deficiencies. Another study from Khyber Pakhtunkhwa, involving 663 patients, reported that 91.4% of those diagnosed with lupus were women, reflecting the global pattern and underscoring the need for greater awareness within our healthcare system and communities.

The consequences of delayed diagnosis extend beyond physical health. Living with lupus means coping with an unpredictable illness marked by periods of remission and painful flare ups. Many patients struggle to continue their education, maintain employment, care for their families, or participate fully in social life. Because lupus is largely invisible, patients are often told that they simply need more rest or are “overreacting,” leaving many feeling isolated while the disease silently progresses.

In Pakistan, these challenges are further intensified by cultural expectations. Women often place the needs of their families before their own health, delaying medical consultation until symptoms become severe. Limited access to rheumatology services in many areas and low public awareness further contribute to delayed diagnosis and treatment. Addressing these barriers requires not only improved healthcare services but also greater public understanding of autoimmune diseases.

As we observe Chronic Disease Awareness Month, we must recognize that raising awareness is a shared responsibility. Healthcare professionals, educators, policymakers, media organizations, and communities all have an important role to play in promoting accurate information about lupus. Equally important is cultivating empathy for those living with invisible illnesses. Sometimes the greatest support we can offer is to listen without judgment, believe patients when they describe their symptoms, and acknowledge the daily challenges they face.

Lupus is more than a medical diagnosis. It is a lifelong journey that demands resilience, understanding, and support. By increasing awareness, encouraging early diagnosis, investing in research, and fostering a more compassionate society, we can help ensure that fewer women suffer in silence. Understanding lupus begins with recognizing that not every illness is visible, and healing begins when knowledge is accompanied by empathy. Together, we can build communities where patients are not only treated medically but also understood, respected, and supported throughout their journey.

About the Author

Qurat ul Ain Arshad is an MPhil scholar with an interest in literature, social awareness, and women’s health. Her writing combines research with reflection to encourage empathy, meaningful dialogue, and greater awareness of important social issues.