Found this blog today, actually was shared on FaceBook by Northern Ireland Rare Diseases…a platform that has let me vent on many occasions.
This struck a chord.
The lady wrote back to the people who through ignorance, lack of information sharing, inadequate recording, and to be honest a lack of empathy with her and her miserable invisible symptoms, made her sit through the years of
never mind the limbo years of we have no treatment for….
i LOVED her writing and thought i would share it with you…
i FEEL this blog, but my invisible fatigue from the chiari malformation which through wrongly read MRI lay un-diagnosed for at least 10 years when i got the antidepressants, and the pity smiles as i reported yet more weird, unrelated invisible issues… which made my life an invisible HELL at times! Before we heard of Chiari-malformation and momentarily felt i had ACHIEVED, almost WON something.
Until i heard the brutally honest and GENUINE words from my Neuro surgeon “i hate this condition ; there is so little we can do for it!” I respect that honesty.
THEN i found other people similar, and at least could feel less alone, and became the expert i am through my experience and theirs on my “Rare-Condition”.
My Chiari Malformation.
please listen…i saw ME, all of us, in this piece.
it was posted with the preface :
This is a great post- many of us will recognise aspects of it
What would you say to the doctor’s you’ve encountered over the years if you had the opportunity? Polly, who has Mal de Debarquement Syndrome (MdDS) writes letters to her doctors in a new blog for us:http://www.raredisease.org.uk/blog-dear-whoever.htm