Fourth fragment_
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I want to tell you a story now.
It’s about medical gaslighting.
Once upon a time there was a sick spoonie feminine creature. One of those who by opening up - and not without being a bit nervous - was making herself vulnerable - one of those, like many, who was trying to talk about what is too hard to explain. She has been trying for so long to make herself clear, to find the right words, correct words, exact words, exhaustive but not too complex words, truth but not too detailed words, in order to make those rare and invisible narratives exist, in order to make things easier and understandable for those with the privilege of ignorance.
In doing so, slowly over the years, she ended up mixing up the diagnosis she received when she was 10 years old, to the point of dismissing it to a simple statement: “I have arthritis, the one that usually happens when you are old but in my case when I was young”.
A diagnosis is supposed to be reliable because it is made by those who she was supposed to rely on because they are supposed to know.
The diagnosis in question was: MCTD. Two main symptoms manifest here: the sclerosis effect, such as SD, which in simple words, means HARD SKIN and the inflammation effect, such as RA, which in simple words means GETTING ON FIRE. None of them are entirely the truth and they are partially correct. They contaminated themselves, which is why the name of this rare autoimmune disease contains the word MIXTE.
“What is happening is that my antibodies are very very rebel, they are such bad girls that instead of protecting me, they decide to sabotage me, but not in a specific, aimed accurate way, rather more in a mysterious, silent, vague way, not organ-specific way, a bit here and there, strong but not too strong, … and the moment you think you are about to discover them, they hide and you begin to doubt their own existence…”
A few weeks ago she saw a new doctor, to have a second opinion. After telling him everything she thought she knew about herself, reciting her clinical story as a mantra, he said:
“ Just looking at your hands, I can tell you: you certainly do not have arthritis”.
She freezed for a few seconds. Was she telling to this doctor the short version she usually says to random people when they are too curious and they can't mind their own fucking business?: “I-have-arthritis,-the-one-that-usually-happens-when you-are-old-but-in-my-case-when-I-was-young”.
NO, She Wasn’t.
She was pretty sure to have given him the most accurate medical, clinical, pathological, scientific appropriate and exhaustive answer she could. The doctor just decided to hear what he wanted by picking up a few words to make things easier and cut out all the rest.
“You don’t have an autoimmune disease”.
He said again.
Autoimmune diseases are constantly gaslighted even by those who are supposed to recognize them.
She answered with stunned:
“I thought autoimmune diseases were supposed to be chronic,
Have you seen my leg?”
He reply:
“Well you don’t have autoimmune disease but this leg is a problem,
don’t you see?”
maybe you had it once, but not anymore.
It’s not a reumathologist you should be consulting, but an orthopedist”.
(From personal experience, but I am sure many can relate to it, orthopedists are superficial and ignorant when it comes to deal with autoimmune disease and chronic conditions).
She answered :
“What about a person with cancer?
if the cancer is ‘gone’ they would never see an oncologist
again in their own life?”
She is in desperate need of evidence.
her eyes are a bit wet.
Why is it always too easy, too soon to cry in front of all those doctors?
She is too scared of not knowing what is going on, again:
“I am not inventing what I am saying,
I have a letter from my doctor that can prove it”.
She has no more energy to put in the trash all she has believed in for almost her entire life and start from zero. She is ready to do anything, to raise to champions of truth the specialists who have been following her over the years in order to not to be abandoned to the unknown.
Smiling, he said:
“We don't all agree all the time, or do we?”
