Was your autoimmune disease years in the making?

When you are diagnosed with an autoimmune disease, it's natural to think that this is where the story begins. After all, it's the moment you finally have a name for what you've been experiencing. Perhaps you’ve been struggling with debilitating fatigue, unexplained joint pain, digestive problems, hair loss or changes to your skin for months, or even years, before a blood test or biopsy confirmed what was happening.

Yet one of the most fascinating things about autoimmune disease is that, in many cases, the diagnosis represents the point at which the condition becomes visible rather than the point at which it began.

When I work with clients, one of the first things we do is step back and look at their health as a whole rather than focusing solely on the diagnosis that brought them to see me. We often go back to childhood, discussing infections, antibiotic use, digestive health, periods of prolonged stress, hormonal changes, travel, significant life events and changes in energy.

Individually, many of these experiences seem unrelated. However, when viewed as part of a much bigger picture, they often reveal patterns that simply weren't obvious at the time. Looking back, many people tell me, "I can see now that my body had been trying to tell me something for years."

That doesn't mean every digestive complaint, every period of fatigue or every skin flare is the beginning of autoimmune disease. Our bodies are wonderfully complex, and symptoms can arise for many different reasons. However, it does remind us that health rarely changes overnight. More often, it evolves gradually, with small shifts occurring long before they become significant enough to result in a diagnosis.

Understanding this changes the questions we ask. Instead of seeing autoimmune disease as something that appeared suddenly, we begin to ask what may have been influencing the immune system over many years and whether there were earlier opportunities to recognise that something was changing.

The immune system doesn't suddenly turn against you

Autoimmune disease is often described as the body attacking itself. Whilst this explanation is simple, I've never found it particularly satisfying because it doesn't really explain why this happens or what has changed within the immune system.

The immune system has one of the most sophisticated roles in the body. Every day it is constantly making decisions about what belongs and what doesn't. It has to recognise bacteria, viruses and other potential threats whilst avoiding unnecessary damage to the body's own tissues. Remarkably, it performs this balancing act with extraordinary precision for most of our lives.

One of the ways it achieves this is through a process known as immune tolerance. In simple terms, immune tolerance is the immune system's ability to recognise your own cells as part of you rather than something that needs to be attacked. Autoimmune disease develops when this tolerance is gradually lost.

The word gradually is important. This isn't usually a switch that suddenly flips overnight. Instead, it is often the result of subtle changes in immune regulation that accumulate over many years before anyone notices anything is wrong.

Autoimmune disease is rarely caused by one event

One of the most common questions I'm asked is, "What caused my autoimmune disease?"

It's an understandable question because we're naturally drawn to finding one explanation. We like the idea of identifying a single infection, one particularly stressful period, one food or one environmental exposure that explains everything.

Occasionally there is an obvious tipping point. A client may tell me that their symptoms began after glandular fever, pregnancy, COVID-19 or a particularly difficult period in their life. These events can certainly influence the immune system, and in some people they appear to coincide with the onset of symptoms.

However, in my experience, it's much more common for there to be a gradual accumulation of influences rather than one single cause.

Genetics may increase someone's susceptibility, but genes alone don't determine whether autoimmune disease develops. Instead, the immune system is continually interacting with the environment around us. Our gut microbiome, infections, nutrient status, sleep, stress, hormonal changes and environmental exposures all influence how effectively the immune system is regulated. For one person, these factors may have very little impact. For another, they may slowly contribute to a loss of immune tolerance over time.

This is one of the reasons I avoid looking for a single culprit. More often than not, it's the combination of many seemingly small influences that tells the real story.

The hidden phase before symptoms appear

One of the most remarkable aspects of autoimmune disease is that it often begins long before symptoms develop.

As immune tolerance becomes less effective, the immune system may begin producing autoantibodies – proteins that mistakenly recognise parts of the body's own tissues as foreign. Depending on the condition, these may target the thyroid, joints, skin, nervous system or many other organs.

What's particularly interesting is that research has shown these autoantibodies can sometimes be detected years before an autoimmune disease is formally diagnosed. During this period, the immune system is changing quietly beneath the surface, yet the individual may feel completely well or experience only vague, non-specific symptoms that would never immediately suggest an autoimmune condition.

Over time, ongoing immune activity can contribute to inflammation and tissue damage. Eventually, the body reaches a point where it can no longer compensate, and symptoms become noticeable. This helps explain why a diagnosis can sometimes feel as though it has appeared suddenly, even though the underlying processes have been developing for many years.

The subtle changes that often come first

One of the reasons I encourage people to pay attention to their health is because our bodies often communicate in subtle ways before symptoms become severe enough to disrupt everyday life.

Looking back with clients, it's not unusual for them to recognise recurring patterns that they had simply learned to live with. They may have experienced persistent bloating after meals, frequent mouth ulcers, recurring infections, increasing sensitivity to certain foods, changes in their skin, poorer recovery after exercise or a gradual decline in energy that they attributed to getting older or having a busy lifestyle.

None of these symptoms, on their own, tells us that someone has or will develop an autoimmune disease. However, they are reminders that symptoms deserve curiosity rather than dismissal.

As both a practitioner and someone who has experienced autoimmune disease myself, I've learned that the body is remarkably good at communicating when something isn't quite right. The challenge is that those early signals are often easy to ignore because they're inconvenient rather than disabling.

Looking for patterns rather than isolated symptoms

One of the simplest yet most valuable things you can do is begin looking for patterns rather than viewing each symptom in isolation.

Instead of asking, "Why am I tired today?" consider whether your energy has been gradually changing over several months. Rather than focusing solely on digestive symptoms after one particular meal, ask whether your digestion has become consistently different from what is normal for you.

Our health rarely changes in a straight line, and it's often the combination of several seemingly unrelated symptoms that provides the biggest clue.

Keeping a simple symptom diary can be incredibly helpful. This doesn't need to become an obsession or involve recording every detail of your day. Instead, make a note of changes in your energy, sleep, digestion, skin, menstrual cycle, pain levels, mood and recovery from exercise, alongside any significant life events, illnesses or periods of stress. Over time, these observations can reveal patterns that are difficult to recognise when living through them day by day.

Supporting your immune system before disease takes hold

Understanding that autoimmune disease develops over time should never be interpreted as a guarantee that it can be prevented. The immune system is influenced by many factors, some of which are beyond our control, including our genetics.

However, this knowledge is also empowering because it reminds us that immune health isn't something we only think about after receiving a diagnosis.

Supporting gut health through a varied, nutrient-dense diet, prioritising restorative sleep, managing stress, spending time outdoors, moving regularly and addressing nutritional deficiencies where appropriate all contribute to the systems that help regulate immune function. These foundations may not be as exciting as the latest supplement or social media trend, but they consistently form the basis of good health.

For those with a family history of autoimmune disease or persistent symptoms that don't quite make sense, seeking appropriate medical advice and investigating ongoing health concerns early can also be valuable. Whilst not every symptom requires extensive testing, neither should persistent changes simply be accepted as normal without asking why they are occurring.

A different way of thinking about autoimmune disease

One of the reasons I continue to find autoimmune disease so fascinating is that it reminds us how interconnected the body really is. Rarely do I meet someone whose health story can be explained by a single event or one abnormal blood test. Instead, it is usually the culmination of many experiences, each leaving a small imprint on the immune system over time.

Perhaps that's why I encourage my clients to become detectives rather than simply patients. Instead of asking only, "What condition do I have?" I encourage them to ask, "What has my body been trying to communicate?"

We cannot rewrite our genetics, nor can we change every experience that has shaped our health. What we can do is become more observant, more curious and more willing to recognise the subtle changes that often occur long before disease becomes obvious.

Because whilst the diagnosis may be the moment your autoimmune disease finally has a name, it is very rarely the moment your story truly began.

References

Eriksson C, Kokkonen H, Johansson M, Hallmans G, Wadell G, Rantapää-Dahlqvist S. Autoantibodies predate the onset of systemic lupus erythematosus in northern Sweden. Arthritis Res Ther. 2011 Feb 22;13(1):R30. doi: 10.1186/ar3258. PMID: 21342502; PMCID: PMC3241374.