Article: The 5 Stages of a Chronic-Illness Diagnosis

[Sly Saint]

You probably know somebody who always seems to be sick but can’t really explain why. Or maybe you’re the one who’s been labeled a problem patient. And if you’re anything like I was, you probably think diagnosis works the way we see on TV: Somebody with a mysterious illness heads to Princeton-Plainsboro Teaching Hospital or Grey Sloan Memorial Hospital, and an intrepid doctor figures out exactly what tests to run to solve the mystery. Alas, things do not usually work this way in the real world.

Here’s what I’ve learned about the stages of becoming chronically ill.

This is when you first realize your symptoms aren’t going away on their own. It may happen dramatically, when a nagging pain becomes unbearable, and you take yourself to the ER. Or it may happen gradually as it becomes harder and harder to get out of bed each morning, until one day you realize your limbs aren’t responding properly to your brain. Many people will turn to internet wellness protocols at this stage: diets, supplements, exercise, more sleep.

This is when you start pushing your doctor to investigate, which can be harder than it sounds. Almost everybody I’ve interviewed (and hundreds more on Twitter) are initially told their symptoms are almost certainly caused by depression, stress, or anxiety. When patients bring their initial symptoms to their doctors, they are almost never offered other tests or treatments. They frequently leave that appointment feeling confused and dismissed.

Because your doctor told you it’s a mental health problem, you start to wonder if it’s all in your head. But if you’re financially and energetically able to persist, you begin many different rounds of diagnostic testing, and your doctor might tell you it’s good news when tests come back normal. But when your quality of life declines due to unexplained symptoms, this does not feel like good news.

While a diagnosis often validates your experience for other people (and may improve your eligibility for benefits), it may not have any impact at all on your treatment or prognosis. To make things more confusing, a lot of people with chronic illness will receive different and sometimes conflicting diagnoses from different doctors.

This is especially true with clinical diagnoses like myalgic encephalomyelitis (ME), fibromyalgia, post-treatment Lyme (the controversy there is beyond the scope of this post), and connective tissue disorders including hEDS and HSD. But autoimmune diseases are also often misdiagnosed or conflated, so it’s totally normal for somebody to be diagnosed with one condition but then to find out later that a different condition is to blame. I’ve interviewed two people with EDS who were initially diagnosed with lupus, someone with Lyme who was initially diagnosed with diabetes, and someone with diabetes who was initially told she just needed better sleep.

full blog here
https://elemental.medium.com/diagnosis-is-a-process-not-an-event-db1e6ae2ac35