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We Need to Talk About 'Diagnostic Limbo'

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For many people with chronic illness, “diagnosis” is a process, not an event. And often it’s a process shrouded in confusion and complication and without a finite or cathartic ending.

I was diagnosed with several chronic conditions at 20 years old (Ehlers-Danlos syndrome, POTS, gastroparesis, mast cell activation syndrome), over 10 years after my onset of symptoms. I fought long and hard for a diagnosis. And in the end, I only got there because I had people around to support me, the financial capability to skip waiting times and see a private doctor, and enough energy to keep pushing on.

Getting diagnosed is a privilege.

When I got so sick that disappeared from my own life; many of the people around me had no conception of the struggles I was going through. They didn’t understand that you could get sick but not get better, that it could be “chronic.” Like most people, they believed that legitimate symptoms plus a good doctor would mean a diagnosis. Followed by treatment, and then getting better.

But in reality, this is simply not the case. And this “diagnostic limbo” isn’t something that’s talked about, understood, or portrayed in mainstream media.

If you ask a patient with a chronic diagnosis how many doctors they had to see, how many times they were dismissed with “it’s all in your head,” and how close they came to believing this and giving up, you may be surprised by their answer.

Patients with rare or poorly understood conditions are frequently misdiagnosed. And the politics of medicine often don’t work in our favor — especially for people of color, young people, women, or those with mental health diagnoses.

For conditions such as Ehlers Danlos syndrome or MCAS, the diagnostic criteria may be clinical, meaning that typical lab work is unable to confirm the presence of the condition.

Currently in the UK, many patients who have a preliminary diagnosis of Ehlers Danlos syndrome (especially the hypermobile type but who are not considered at risk of serious complications) are unable to achieve a referral to a geneticist. And the exact gene mutation is yet to be found, therefore it can’t be tested for. This means that they sit in a sort of limbo, with an initial but unconfirmed diagnosis. Similarly, with MCAS a lack of clear guidelines for the recognition, testing, and effective treatment of the condition leaves patients at a loss with how to receive care.

Many turn to private or holistic treatments to manage their symptoms. Or experiment with dietary changes and off-label remedies.

Explaining symptoms, feelings, and experiences can also be a challenge. At my worst, I remember that my brain felt so foggy I couldn’t even understand where I was or what I was doing. Explaining the wide array of uncomfortable symptoms I was having was an impossible task. Language and subjectivity can be a huge barrier to patients.

Some spend their entire lives without knowing exactly what is causing their symptoms. When I got diagnosed with a genetic condition, at least two of my other family members with complex and unexplained medical histories went on to be diagnosed also. I wonder how many others in my family lived without being afforded the opportunity to understand the ailments of their body.

When you have been sick for years sometimes you simply need a diagnosis confirmed and written on paper. For validation.

But a diagnosis also provides permission to do life differently, such as use mobility aids. It provides access to financial and practical support, and the ability to connect with others experiencing a similar battle.

Every day I go through a constant process of validating myself. Of validating the fact that I am “sick enough” to do things differently.

And even when you have a diagnosis, it doesn’t end there. Often a name can’t explain how or why you are sick, and what can be done to make you better.

It is true that regardless of its name, your symptoms are valid. The pain you experience day-to-day is valid. Your health experience is valid — diagnosis or not. A name won’t make it more real — it already is.

However, a diagnosis changed my life. It was a privilege I am eternally grateful for, but it was also a battle. And this battle is one that is all too familiar for chronic illness patients.

Photo by Ruben Ramirez on Unsplash

Originally published: January 27, 2021
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