Undiagnosed Chronic Pain?

Living with chronic pain affects every aspect of your life. The pain can be overwhelming, making you feel limited, depressed, even alone. And the discomfort and subsequent chronic fatigue make it difficult to move through everyday life, keep a job, do things for yourself, not to mention doing something as simple as caring for, or even seeing, friends and family. 

Having a chronic condition diagnosis is hard enough. It is even more challenging to go through all of this every day, yet be denied a concrete diagnosis. It can be exhausting and you can feel like giving up. However, you are not alone.

Chronic pain is defined as persistent pain lasting at least three months. And it has many underlying causes, from arthritis to cancer and more. It affects more than 50 million adults in the U.S. and costs up to $635 billion annually. However, many argue that the real number is much higher than this, as that total doesn’t account for all those living in pain, without a diagnosis.

It is because of this that the National Institute of Health (NIH), in their recent National Pain Strategy publication, called for more precise numbers of individuals living with chronic pain. Hopefully this will, in turn, lead to a more accurate view the diversity and scope of chronic pain in the United States.

So why does chronic pain seem to go undiagnosed? Well, chronic pain is notoriously hard to diagnose, as it is a process of elimination for other possible causes. And certain chronic pain conditions are notoriously hard to determine. Either their symptoms mimic other illnesses or there is a lack of understanding around them entirely. This means many chronically ill people struggle for years in pain, and to get a meaningful diagnosis, then treatment.

On average, for people with rare and chronic conditions, it takes approximately 7.6 years and visiting at least 8 doctors before receiving a correct diagnosis. Even worse, sometimes a patient is just not believed by doctors.

Why? Research shows that this is especially true for women and Black Americans, and doubly compounded for Black women. Often these demographic groups are falsely seen as overly dramatic or biologically different. It affects how both groups are treated for their pain. In other cases, undiagnosed pain can be due to a lack of understanding or specialist knowledge around a condition.

Unfortunately, delays in diagnosis can have dangerous consequences. And some never get that diagnosis.

If you feel you are not being heard in regard to your persistent pain:

Keep a pain diary.

Research your symptoms.

Look for testimonials for pain specialists — Facebook, Google, Yelp.

Keep at it. Find a doctor who listens to you. Don’t settle.