Spotlight on… autoimmune diseases

The symptoms of autoimmune conditions are often invisible—but for 75-year-old Francesca Ianni, who was diagnosed with Crohn’s disease at age 50, their impact is a daily reality.

“A good day is when I don’t rush to the toilet so much,” she says. “On a bad day, I’m running to the toilet constantly—and then I have to lie down. I’ve got no energy.”

That level of unpredictability has reshaped her life.

“I don’t take public transport much anymore,” she explains. “I need to be in control of my surroundings.”

For people like Francesca, these daily limitations stem from complex conditions that are still not widely understood.

So what exactly are autoimmune diseases? And why are they so hard to diagnose and manage?

Understanding autoimmune diseases

Autoimmune diseases are a group of more than 80 chronic conditions where the immune system mistakenly attacks the body’s own healthy tissues. They can affect any organ or system, from our skin and joints to the brain, thyroid or gut.

In Australia, around 5 percent of people live with an autoimmune condition, and women are disproportionately affected. Despite this, many autoimmune diseases are still widely misunderstood—which can lead to delayed diagnoses and mismanagement.

Common symptoms include:

• persistent fatigue
  
  
• muscle or joint pain
  
  
• gastrointestinal changes
  
  
• skin rashes or sensitivity
  
  
• brain fog and mood shifts.

“Autoimmune diseases often present with invisible symptoms like pain, fatigue or brain fog,” says Nicolette Ellis, Chairperson of Chronic Pain Australia. “And they’re more common in women, which can lead to biases in how symptoms are treated or believed.”

For many people, getting a diagnosis can take years. Symptoms may be vague or fluctuate, and conditions like lupus, rheumatoid arthritis or Hashimoto’s disease often mimic other illnesses.

“It’s not uncommon for people to spend three or more years searching for answers,” says Nicolette.

There are blood tests that can help identify autoimmune activity. But to get the right tests, you may need to push for them.

“Ask your GP to investigate inflammatory markers or refer you to a specialist,” advises Nicolette. “You know your body best, so trust your instincts.”

For Francesca, the search for answers led to her find a specialist with a deep understanding of her condition. “I met an excellent specialist who knew all about Crohn’s disease, and he knew how to help me. I still see him today.”

The burden of invisible symptoms

From Crohn’s disease and rheumatoid arthritis to lupus and multiple sclerosis, autoimmune conditions are complex and deeply personal. Many come with logistical challenges that can limit spontaneity, confidence and independence.

“I used to love going for walks, but now I panic if I don’t know where the toilet is,” says Francesca.

The invisible or fluctuating symptoms that come with autoimmune conditions can create challenges that aren’t just medical, but social too. In fact, for many people, the greatest challenge isn’t the illness itself—it’s feeling dismissed or unsupported.

“With invisible symptoms can come speculation or disbelief,” explains Nicolette. “But for the people experiencing these symptoms, they are very real—and they affect everything from how well they can work or socialise to their sense of identity. People might not look sick on the outside, but inside, they’re fighting a daily battle.”

For Francesca, this rings painfully true.

“Looking at me, people think I’m fine. But they don’t see what’s going on inside,” she says. “It’s a condition I’ve probably had since childhood, but it took years—and a lot of misdiagnoses—before I finally got answers.”

Finding the right care team

Because autoimmune conditions vary so widely, so do the treatments, Nicolette says it’s critical that people take an active role in managing their condition and building a care team that understands their needs.

“Sometimes we stick with a care team just because we’ve always seen them, but that doesn’t mean they’re the best people for our current needs,” she says.

If you don’t feel respected or supported, it’s okay to seek a second opinion, she adds. So look for practitioners who understand your condition, provide evidence-based options and listen without judgement.

“Don’t settle for poor care,” she says. “Find health professionals who validate your experience, and build your knowledge so you can advocate for yourself.”

Of course, getting a diagnosis is only the beginning. The next step is learning to live well.

Managing symptoms with a holistic approach

Managing autoimmune conditions often requires a mix of medical treatment, lifestyle strategies and emotional resilience. This holistic approach involves:

• Medical care. Like immunosuppressive or anti-inflammatory medications.
  
  
• Functional support. Such as exercise physiology, physiotherapy or occupational therapy.
  
  
• Emotional wellbeing. Using tools such as counselling, peer support or pacing strategies.
  
  
• Lifestyle factors. Including sleep, nutrition and social connection.

However, figuring out the right mix of medical, functional and emotional support can take time.

“We’re all different,” says Francesca. “One food might be fine for me but not for someone else. You just have to try and see what works for you.”

That trial-and-error mindset, says Nicolette, is a vital part of learning what helps—and what doesn’t.

“The goal is to reduce the vicious cycle of isolation, deconditioning and stress,” she adds. “Small, meaningful activities that bring joy can be powerful pain relievers.”

For example, the quiet focus of crocheting has become a form of therapy for Francesca.

“Crochet helps my mind stay at peace,” she says. “I’m too busy counting stitches and making things to think about what’s wrong with me.”

The power of peer support

A new diagnosis can feel overwhelming, but connecting with others who’ve walked the same path can be a game-changer.

“Peer support is incredibly important,” Nicolette says. “Online forums, advocacy groups, and condition-specific communities are full of lived wisdom—and these are the people who are going to be able to give you really valuable information. Because it can be very challenging to find health professionals who really understand your particular condition, particularly if it’s a rare one.”

She recommends looking for groups that support autoimmune and chronic pain conditions, or calling Chronic Pain Australia’s Pain Link Help Line on 1300 340 357.

For Francesca, acknowledging the psychological impact—and connecting with others who understand—has made a big difference.

“Mentally, it gets to you,” she admits. “You think, ‘What’s wrong with me?’ But I’ve learned to shift my thinking. I know others go through this too.”

Advice for the newly diagnosed

Getting an autoimmune disease diagnosis can bring both relief and fear. Nicolette’s advice includes:

• Start with learning. Look up reputable condition-specific organisations.
  
  
• Ask questions. Don’t be afraid to bring ideas or research to your appointments.
  
  
• Build a care team. Choose practitioners you trust, and who support your goals.
  
  
• Find your people. Join peer groups, online or in-person.
  
  
• Go gently. Practice pacing, rest and self-compassion.

“Treat yourself like you would your best friend,” says Nicolette. “You don’t have to be ‘productive’ to be worthy. Find purpose in new ways and allow yourself time to adapt.”

She encourages building a gentle routine and making space for rest—without guilt.

“Acceptance is an ongoing practice,” says Nicolette. “But people can live meaningful, connected lives with autoimmune disease. There is hope.”

Living with an autoimmune condition isn’t easy. But with support, curiosity and a care team you trust, it’s possible to take back control. Every step forward, no matter how small, counts.

“You don’t have to do it alone,” Nicolette reminds us. “There are people who understand.”

For practical help or someone to talk to, contact Chronic Pain Australia’s PainLink helpline on 1300 340 357.