I found this quote a while back, but it still resonates with me. More importantly, it validates my experiences thus far. Not only has it been true since my hydrocephalus diagnosis (May 2007), but it’s especially true following the Intracerebral Hemorrhage I had, during a repeat ETV (May 2021). Life changed in an instant, albeit unknown to me at the time, even more so than before!
The fact that I “function better than most people with a brain injury”, as I keep being told, I consider a blessing. I certainly work hard at my recovery, figuring out strategies to navigate life daily.
Regardless, medical gaslighting sucks! It would be such a game changer if doctors truly listened to their patients, worked WITH them instead, and didn’t allow their ego to get in the way…
I respect you more if you tell me you don’t know instead of gaslighting me.
Challenges with an incurable condition, and invisible injury, are hard enough without medical gaslighting.
To anyone who has ever experienced it, this validation is for you.
Whether you are newly diagnosed, or transitioning from paediatric to adult care, going through the maze of specialist care. Not all medical care providers are knowledgeable enough about hydrocephalus or brain injury, despite their job title. But, there are those who provide the care you need, and go above and beyond. Find one you are comfortable with, keep advocating for yourself and NEVER give up.
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