“Your test results are normal”
“You don’t look that sick”
“What do you want ME to do about it?”
Healthcare workers - there’s a myriad of conditions that are quite serious and debilitating but will have “normal” test results.
So what DO we want you to do? 🧵/1
“You don’t look that sick”
“What do you want ME to do about it?”
Healthcare workers - there’s a myriad of conditions that are quite serious and debilitating but will have “normal” test results.
So what DO we want you to do? 🧵/1
We want you to listen to us. Believe us when we tell you something is wrong. Trust us that we are the experts in our own body - and we aren’t coming to you for “fun”
We’re coming to you because we can’t fix ourselves - we need your help. /2
We’re coming to you because we can’t fix ourselves - we need your help. /2
Get curious. Standard labs are just that - “standard”. Most standard tests were also designed and taught based on male patients - females can and do have a different definition of “normal”.
We want you to think outside the box. /3
We want you to think outside the box. /3
Ask us questions. Get to know us. A thorough history where you really pay attention to the patient can give you WAY more clues than a standard set of vitals and blood work.
/4
/4
Don’t rush to judgement. Try and put aside bias and pre-conceived notions. It’s lazy medicine to assume a problem is because of someone’s weight - or to automatically dismiss them as anxious just because they’re wearing a mask. /5
Remember that we’re people too - we aren’t just a set of symptoms on paper.
We are complex individuals and every one of us is unique. What might be “normal” for one person might be wildly abnormal for others. /6
We are complex individuals and every one of us is unique. What might be “normal” for one person might be wildly abnormal for others. /6
I will use myself as an example …I had a life threatening internal bleed & abdominal infection following my hysterectomy. It was missed THREE times at the ER. Why?
Because to them my triage vitals were “normal enough.” My BP was high FOR ME - but they didn’t know my “normal” /7
Because to them my triage vitals were “normal enough.” My BP was high FOR ME - but they didn’t know my “normal” /7
My temperature was elevated but again - not enough to warrant concern. I tried to tell them that my baseline temperature runs two degrees below normal - they chose not to listen.
They didn’t even run basic labs or perform an abdominal exam. /8
They didn’t even run basic labs or perform an abdominal exam. /8
Later in life this happened again when I was constantly fainting but my heart tests came back “normal”.
Once again I was told nothing was wrong because no one was willing to think outside the box. /9
Once again I was told nothing was wrong because no one was willing to think outside the box. /9
I had dysautonomia - and my fainting was being caused by POTS. Most patients with this condition will have a “normal” cardiac work up. Which is why you have to listen & perform additional tests.
A simple stand test or 24 hour urine would have alerted them to the issue /10
A simple stand test or 24 hour urine would have alerted them to the issue /10
So what we want you to do is your job. We want you to help us figure out what’s wrong. We want you to stop dismissing us on the basis of standard tests that don’t uncover the lions share of chronic illnesses. /11
We want to feel safe in your care again. Wear a mask. Treat us with respect and dignity. Let us be partners. Don’t discount symptoms just because YOU can’t find a cause - validate our concerns and refer us to someone who CAN figure it out /12
Two of the most powerful phrases a doctor can utter are:
“I don’t know what’s wrong but I’m going to find out”
“I’m sorry I was wrong”
I know they hate saying sorry due to fear of liability - but it means the world to the patient /13
“I don’t know what’s wrong but I’m going to find out”
“I’m sorry I was wrong”
I know they hate saying sorry due to fear of liability - but it means the world to the patient /13
When you get a diagnosis wrong - you alter the course of our lives. We push ourselves because you convince us it’s “all in our head.” We may sustain additional damage - or worse - lose our lives.
If ever there was a time to say sorry - it’s when you got the diagnosis wrong. /14
If ever there was a time to say sorry - it’s when you got the diagnosis wrong. /14
Unmitigated covid spread is causing a huge increase in patients with complex chronic illness - let’s work together to help them get answers and treatments faster than those of us who came before.
Let’s stop gaslighting & dismissing and start believing patients. /end
Let’s stop gaslighting & dismissing and start believing patients. /end
This thread underscores the need to have an advocate with you at all times - someone to push for you NOT to be dismissed.
My next article will focus on how my POTS was misdiagnosed as “anxiety” or “nothing wrong” for years…. And the damage it did:
disabledginger.com/p/how-to-be-an…
My next article will focus on how my POTS was misdiagnosed as “anxiety” or “nothing wrong” for years…. And the damage it did:
disabledginger.com/p/how-to-be-an…
ER staff missed a life threatening post operative infection and bleed because they were too focused on “averages”. They didn’t listen to me when I said my BP and temperature were wildly off “for me”.
Listen to your patients. It could safe a life:
disabledginger.com/p/my-most-dang…
Listen to your patients. It could safe a life:
disabledginger.com/p/my-most-dang…
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