#ChronicIllness #ChronicPain #SpinalCSFLeak #CerebrospinalFluidLeak #RareDisease #neurology #HeadInjury #PostconcussionSyndrome #Headache #Depression #Anxiety #SuicidalThoughts
I fell off a ladder nearly exactly 5 years ago. I was diagnosed with a concussion, then post-concussion syndrome, then after 8 weeks correctly with a spinal CSF leak. I have been unwell since - with ups and downs. Cycling being pretty much bedridden for weeks or months then upright all day following treatment... and then everything in between that.
But never ‘well’ or ‘normal’
My medical journey has been really really tough. The battles of TRYING to explain how ill you feel to doctors and medical professionals are exhausting and brutal on your mental health.
This is a long extract from an article I wrote to try and process some of the trauma of my own medical journey following up from some stuff that came up from counselling to try and work through very complex and traumatic memories and emotions after another physical and mental health crash in the Spring!
I wrote it as an ‘open letter’ to try and explain to doctors that we often feel so vulnerable and exposed it’s like we feel completely ‘naked’ in front of them - when having to see them or go into hospital.
How do you feel when you have to see doctors - especially when they don’t really understand the complexity of your physical or mental health conditions?