The Mental Health Impact of a Late Diagnosis of Chronic Health Conditions

For many people living with a chronic health condition, the diagnosis is not the beginning of the story. It often comes after years of symptoms that were dismissed, misunderstood or put down to stress, anxiety or “just the way you are”. By the time an answer finally arrives, a person may have spent a long time wondering whether they were imagining things, which can leave a lasting mark on how they see themselves and how much they trust their own body.

The long road to an answer

Conditions such as coeliac disease, endometriosis, autoimmune conditions and connective tissue disorders are well known for long delays in diagnosis. Coeliac Australia estimates that around 80% of Australians living with coeliac disease are still undiagnosed. Symptoms can be vague, they can come and go, and they often don’t fit neatly into one category, which means people can be passed between practitioners for years. Along the way, many people are told their symptoms are psychological, and some are even referred for mental health support in place of further investigation.

Over time, this experience of not being believed can have its own psychological impact. People may begin to doubt their own perceptions, minimise their symptoms or stop mentioning them altogether, because they have learnt that raising them doesn’t lead anywhere. Some people have lived with symptoms for so long that they no longer recognise them as symptoms at all, they are simply what life has always felt like.

Relief and grief at the same time

When a diagnosis does come, many people describe an enormous sense of relief. There is finally a name for what has been happening, and with it, confirmation that it was real. However, relief is often not the only feeling. It is very common for a late diagnosis to also bring grief, such as grief for the years spent unwell without knowing why, for opportunities that may have been missed, and for the version of life that may have looked different with earlier support.

People can feel guilty for not feeling purely grateful, and may tell themselves they should be happy to finally have answers. Both feelings can be present at the same time, and both are valid. Grief in this context is not a sign that someone is not coping, it appears to be a natural part of adjusting to a significant change and making sense of what has been lost.

There can also be anger, which is understandable when someone looks back on the times they asked for help and were turned away. Anger can be a protective response, and it often softens once it has been acknowledged rather than pushed away.

When to seek support

Adjusting to a late diagnosis takes time, and it is normal for feelings to come in waves. It may be worth seeking support if low mood is present most days for more than two weeks, if there is a loss of interest in things that used to bring enjoyment, if someone is withdrawing from friends and family, or if there are significant changes in sleep or appetite. Any feelings of hopelessness are always worth talking to someone about.

It can also help to find a practitioner who understands that the distress is connected to a real physical experience, and who will not frame it as simply a matter of changing how you think. For people who have spent years being told it was all in their head, being believed is often the first and most important part of support.

Moving forward

A late diagnosis does not erase the years that came before it, however, it can be the beginning of a different relationship with your body and your health. With the right support, many people find that making sense of their story, and being heard while they do it, allows them to move forward with more self-compassion and less self-doubt.