The Way We Treat the Undiagnosed Needs to Change

Being undiagnosed is an underacknowledged stage of living with chronic physical or mental symptoms.

All illnesses and health conditions are undiagnosed before they are diagnosed.

We know this and we understand it. Unfortunately, science is not at a place where a magical robot can tell you instantly what is going on. The diagnostic process is often made up of many, many, steps.

For some, the period between symptom onset and diagnosis can be short and for others, it can last years. Too often people waiting to receive a diagnosis are faced with doubt from others.

This process can be made harder if doctors, medical professionals, of loved ones aren’t supportive.

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When the undiagnosed are not believed

Someone who is undiagnosed may live for months or even years without having any proof or medical evidence to explain their symptoms. This means that the only thing medical providers, friends, and family members can go off of is their word and their descriptions.

A person’s word about their own bodily experiences should be proof enough, but it often isn’t seen that way.

The first steps of trying to get a diagnosis often include undergoing some common but important tests. If these tests come back “normal,” the patient is often told that there must be nothing wrong with them, or at least, nothing of note.

This happens often and, usually, it becomes the patient’s responsibility to pursue other avenues.

Sometimes a person who is undiagnosed may be told by a doctor that their symptoms are not so bad, or that they aren’t unwell at all. This can be hurtful for an undiagnosed patient who still feels that something isn’t right, especially if it feels like their symptoms are getting worse.

Being told it’s “all in your head”

Sometimes patients are told that there’s “nothing wrong” or that their symptoms are “all in their head.”

A patient who presents with symptoms should be taken seriously even when there’s no immediate medical explanation.

Being told there’s nothing medically wrong when you’re experiencing very real symptoms can lead to internalized doubt, and gaslighting, and may make people feel inclined to repress their true feelings.

All of this is isolating, scary, and exhausting for the undiagnosed patient. The undiagnosed are often left to try and advocate for their healthcare alone, with few people believing that their symptoms are worthy of time or advocacy efforts.

This can create a dangerous cycle. If patients are discouraged from seeking care, or advocating for themselves, their diagnosis and treatment may be further delayed.

Doing your own research

When you don’t have a diagnosis, sometimes it can feel like a level of hyper-independence is required. The responsibility can call on you to keep pursuing the root cause of symptoms when many others believe there is none. The undiagnosed are often forced into the position of being a medical researcher of their own health.

This is related to another way that the undiagnosed are stigmatized: the trope of the “hypochondriac.”

Hypochondria is a very real disorder, but the label is thrown around far too loosely. It’s often used to classify any patient who is concerned about persistent, troubling symptoms. Sometimes when someone is labeled as a hypochondriac, their valid concerns are not taken seriously.

There should be no shame in being an undiagnosed patient taking the initiative to find their own answers. There are countless, reputable medical information websites out there. These can empower people by providing them with health information.

Not every internet search will return a relevant or accurate answer. And a few internet searches won’t make you a medical expert overnight. Still, the internet can be a powerful tool to help you better understand your symptoms and your options.

Sometimes people will do their own research and request tests or medical assessments that lead to their doctor finding the correct diagnosis.

The burden of seeking a diagnosis

The financial impact of being undiagnosed is significant too. Many undiagnosed patients end up spending large amounts of money to see specialists or have tests done again and again to uncover the cause of their symptoms. This cost is not something that everyone can afford. This means that people who don’t have the financial means to pursue their diagnosis, often cannot. This can even be misconstrued as a lack of motivation to get a diagnosis.

There are also very few support groups or resources for the undiagnosed, and the undiagnosed are often excluded from chronically ill and disabled communities. It can be much harder for the undiagnosed to connect with others who are feeling and experiencing similar things.

The Disability Pride Flag in 2022 did change to include undiagnosed disabilities on it which is a step in the right direction.

The bottom line

When a cause for an undiagnosed patient’s symptoms cannot be found, patients may be told they are exaggerating their symptoms or looking for attention.

This is truly harmful and needs to change.

Being undiagnosed is not a weakness or personal fault. It’s not a sign that your pain or symptoms are not real — it’s more often than not, just a sign that they have not yet been diagnosed.

It’s important for outsiders to understand how exhausting, expensive, and isolating the diagnostic process can be. People who are undiagnosed deserve more support, acknowledgment, and encouragement.