Don’t lose the focal point of what we have in common..

Don’t lose the focal point of what we have in common..

We all have one thing in common…We or Someone we love has Hydrocephalus. This in itself is enough to provide a link to sanity. Being able to converse with people (using terminology they understand) who can share your feelings, empathize with your symptoms and actually understand fully your paranoia and concerns.

At times I feel lonely, inside this body, knowing how Hydrocephalus is affecting me at any given moment in time. I have tried pulling the people I love into this world, just so they can understand but…no matter how I explain it to them, they just don’t get it. I don’t hold it against them because how could they possibly – I get that.

This is the reason why I fully appreciate the support groups on Facebook because I see value in each one of them. To me…It doesn’t matter if people are religious or not, it doesn’t matter that some people believe in science… It doesn’t even matter that some believe in nothing at all. This would set us apart, yes. But, we still have one very real thing in common…Hydrocephalus. Some of us have other conditions on top of it and we all have a different story to tell. Some stories are good and positive and some…well, not.  It can be a sensitive issue for some of us simply because we are different, so being respectful and mindful of others feelings would be a definite requirement (In my opinion).

Ever think it might take a world of courage for someone to post about how they are feeling or just simply ask for advice or offload…because they have nowhere else to go?

I think that regardless of what you believe in or don’t believe in, the support shouldn’t change simply because of it. I’ve read some mean posts from people in the groups, attacking others and plainly being dismissive. Quite frankly, I find it disappointing, to say the least. I came close to leaving a group purely because of what I was reading but then it dawned on me, the value would be lost on me. The value of the group was worth far more to me than the undesirable posts/comments, so I chose to just scroll on by and stay.

I would like to think that, the groups on Facebook have been created along the same vein of thinking…to provide a platform of support to people living with or affected by Hydrocephalus. A place where you get to ask questions when you are concerned about something, hoping others who have had similar experiences, could offer reliable advice. I know we are not medical professionals but I for one would take advice from a fellow Hydro warrior before trusting what a doctor says (especially if I haven’t reached a level of trust in them and given my experiences thus far).

I would also like to think that when I am being dragged down in a state of depression because I’m thinking too much about how bad this condition is making me feel that, I can come to the group for support, regardless of what that might be. Prayers are welcome, words of encouragement and support and most of all, feeling like someone else cares enough to see me through the storm. It’s about the reassurance and walking away feeling hopeful or at least listened to that is key to me. 

Don’t lose the focal point of what we have in common – Hydrocephalus…Everything else, well that’s just irrelevant…
I accept everyone regardless of what gets them through their tough times…shouldn’t we all?

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

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