Navigating invisible burdens: The struggles of autoimmune diseases

Symptoms such as fatigue, insomnia and brain fog are often misunderstood and ignored.

By Seethalakshmi Suraj

Picture this: You step out of your home knowing you must return within a four-hour window. While you’re out, you map spaces not by comfort or cuisine, but by restroom access. That’s what living with inflammatory bowel disease (IBD) can look like.

Now try this: You want to exercise but cannot risk injury because your platelet count is low due to immune thrombocytopenia (ITP). You choose a “safe” sport — swimming — yet return home bruised and exhausted, while the chlorine irritates teeth weakened by earlier steroid medication.

These everyday negotiations rarely appear in medical reports, yet they shape the lives of millions of women living with autoimmune disease.

Autoimmune diseases occur when the immune system mistakenly attacks healthy cells, organs, joints or skin. Conditions such as rheumatoid arthritis, lupus, IBD and many others fall under this umbrella.

Globally, nearly 80 per cent of people diagnosed with autoimmune diseases are women, and researchers believe hormonal factors, genetic predisposition and environmental triggers may all play a role.

Beyond biology lies another challenge: the cultural expectations placed on women, which often widen the gap between what medical tests capture and what patients actually experience.

In conversations with women across India living with autoimmune conditions, one theme emerged repeatedly: symptoms often exist long before they are validated by diagnostic tests.

When symptoms don’t show up on charts

Deepa Kannan, a passionate crocheter who lives with rheumatoid arthritis, remembers how her symptoms were initially misunderstood.

“The symptom started with inflammation in my left wrist and slight pain in my neck and shoulders,” she recalls. “Many doctors mistook it for muscle cramps or overstrain because I crochet, and advised me to stop crocheting altogether.”

Though she paused the hobby she loved for nearly two years, the problem persisted. “My wrist movement eventually became completely restricted,” Deepa recalls.

Uma Ganesan, who has lived with IBD for eight years, recalls how her earliest symptoms — frequent bathroom visits and abdominal cramping — were initially dismissed as pregnancy hormones and stress. Today, her life revolves around careful planning.

“I can’t plan anything without planning my meal intake and my proximity to a washroom,” she says. “From being an adventurous and independent person, I now dread travelling.”

Invisible weight of chronic illness

Many autoimmune conditions are described as invisible illnesses — the body may appear healthy even when internal symptoms are severe. Symptoms such as fatigue, insomnia and brain fog are often misunderstood, which over time can lead to career disruptions, social withdrawal and major lifestyle adjustments.

This author, who has lived with ITP for over a decade, says medical professionals also need to recognise the emotional toll of the disease.

Vaishali Tanwar, another ITP patient, echoes this sentiment.

“I get tired very easily, especially after work or exercise,” she says. “The medications also cause gut issues and migraines, and I catch infections more easily.”

The emotional impact can also reshape life plans. For Vaishali, one of the hardest aspects has been deeply personal.

“The hardest invisible part is not being able to give my child a sibling,” she says.

For Sonia Dogra, who lives with alopecia areata, the unpredictability of hair loss brought its own emotional challenges. She also remembers how discouraging her first consultation was.

“The first doctor I went to see scared me so much. He said I was very late to come for diagnosis and it was impossible to save my hair. Ten years later, I have proved him wrong. I am in a better space with regards to my hair than he had predicted. I wish doctors would understand the importance of positive reinforcement.”

Deepa Kannan adds that social expectations can deepen the struggle.

“In the early stages, cultural expectations weighed heavily on me. When people saw me in pain, they would say, “You must be strong and overcome it,” as if it were simply a matter of willpower. Over time, I learned to accept my condition and prioritise caring for my health.”

Why self-advocacy becomes essential

Many patients learn that advocating for themselves is crucial. While this writer questioned certain treatments after experiencing long-term steroid side effects, and chose holistic approaches and lifestyle changes instead, for Vaishali, self-advocacy means actively participating in her care.

“It means asking questions, seeking clear explanations about my condition and understanding treatment options,” she says. “It also means persisting until I find the right medical guidance,” she adds. Sonia recalls declining steroid injections despite being assured they were harmless.

“Self-advocacy means making my own personal choices, even if they are not the popular ones,” she says, adding, “It means having the right to say no to treatments.”

For Uma, self-advocacy has meant learning to listen closely to her body. “Don’t blindly believe when symptoms are dismissed as being in your head,” she says.