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A weird thing about *not* pursuing diagnosis is how many people are worried you might miss out on a life-altering cure.
I'm definitely not saying that there are no helpful treatments for any chronic illness.
I'm saying that if your only pathway to dx involves arguing with a lot of dismissive doctors because they don't believe you have a problem, you probably already know that the tx options are.
I'm saying that if your only pathway to dx involves arguing with a lot of dismissive doctors because they don't believe you have a problem, you probably already know that the tx options are.
I'm also... pursuing diagnosis right now.
I'm in favor of accurately naming what is happening in our bodies.
But I want the general public to know that diagnosis doesn't mean what medical dramas have led us to believe it does.
I'm in favor of accurately naming what is happening in our bodies.
But I want the general public to know that diagnosis doesn't mean what medical dramas have led us to believe it does.
Not pursuing diagnosis is a valid course of action. Taking a break from pursuing diagnosis is often a necessary act of self care.
Most patients figure out what is going on with their bodies *before* their doctors do. Getting a doctor's seal of approval isn't always meaningful.
Most patients figure out what is going on with their bodies *before* their doctors do. Getting a doctor's seal of approval isn't always meaningful.
A lot of people learn more about life-changing treatment options from patient groups, not doctors.
A lot of doctors are happy to treat symptoms without a diagnosis.
Formal diagnosis by a doctor is not the main pathway to treatment for most people with chronic illness.
A lot of doctors are happy to treat symptoms without a diagnosis.
Formal diagnosis by a doctor is not the main pathway to treatment for most people with chronic illness.
Here's a poll about how patients typically self dx first: https://twitter.com/bennessb/status/1244718221892165639?s=19
And here's a thread of people talking about all the different places they picked up ideas that improved QOL: https://twitter.com/bennessb/status/1234937012098150402?s=19
If you're replying to this thread to tell me that getting a diagnosis is Good, Actually then I'm sorry to tell you that you've missed the point.
Of course diagnosis can be life changing. And for lots of folks, pursuing dx can also be life changing because it can be traumatic af.
Of course diagnosis can be life changing. And for lots of folks, pursuing dx can also be life changing because it can be traumatic af.
And tbh, most stories that I hear about people who regret that their condition was not caught earlier because it may have been somewhat reversible?
The diagnostic delay was caused by dismissive doctors, not by patient disinterest.
The diagnostic delay was caused by dismissive doctors, not by patient disinterest.
