There are a lots of things that I’ve had to get used to as I grew up doing life with PCD. One of those things was learning that unlike most others I had no privacy. I mean absolutely none whatsoever. Nothing is sacred when you have primary ciliary dyskinesia. My life and my body was an open book to everyone. I guess it didn’t help that I had family that liked to share everything, and I mean everything. Imagine being in first grade and your teacher and classmates parents heard all about your antibiotic induced yeast infection. Or that your bowls were runny and you still wet your bed because the medicine you took wiped you out. Wiped you out so much that you often didn’t wake to go to the bathroom when your body said it needed to go.
Then there is the flip side, in order for your medical team to treat your medical needs they need to know everything. And I mean everything. Nothing is private. I often wonder how many people on the planet are actually afforded privacy that they want. Is their life and open book to others? Do they have to report their bodily functions on a regular basis to a medical team? I wonder what it would like to be normal. Have body autonomy and do all the things normal people do. This probably sounds pretty crazy coming from someone who is so open with their PCD journey to be saying nothing is sacred when it comes to PCD. In fact I just had a discussion on this very thing a few weeks ago. The person I was talking to is very private when it comes to their life, including on social med. I on the other hand discuss my journey, and sometimes a lot. We talked about how I liked privacy too, but have learned over the years that I need to be somewhat open to help control the message. I went so long under the mercy of others as to what was shared and what was not shared. I guess in a small way sharing on my own became a way to take back the privacy control that I was denied as a child. If nothing is going to be sacred, at least I can control the flow of information and decide what is out there for the public and what isn’t out their. You lose a lot when you journey with PCD, so take back your power and control your message, and don’t let anyone tell you different. Remember on our journey with PCD it isn’t the destination that matter, but the journey to get there.
Be sure to join us next week for another Topic Thursday.
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