Hydrocephalus : There’s no such thing as a dumb question

Hydrocephalus : There’s no such thing as a dumb question

There are times when I go through some of the various posts on Facebook and can’t help but feel my tummy flip or cringe at what some people say to others. This happens on various posts and it doesn’t necessarily have to be only in the Hydro groups. But, I’m writing this today with those groups in mind.

We are all trying to make sense of this condition and how it affects us. Some of us are a little more “experienced” than others. A few “newbies” have reached out and contacted me after reading one of my blogs, having gone in search of all they can find after receiving their diagnosis.

I’m sure we all know what that’s like, the first time you hear those words. The tsunami of emotions and questions that come to you and not to mention…feeling absolute isolation.

I am fully aware that the people in the groups are by no means “medical professionals“. But, they have experienced the real thing first hand. It’s because of this that, I for one, value what I get out of the groups. I’m also of sound mind enough to know that seeking actual medical advice when something feels wrong, is the better option alongside any advice I would have walked away with.

I’ve written before about not losing the focal point, this stance remains. Having empathy for the next person is so key when living with this condition especially when close family don’t give a shit. Yes, there are those who actually do care about their loved one and there are those who are there 1000% in support of their brother, sister, father, mother, daughter, son, etc.

As someone with Hydrocephalus, I too am guilty of asking “dumb” questions (no such thing)…repeatedly. I do this purely because it needs to sink in and I need to make sense of it all…for myself. This would not have been a problem pre-Hydrocephalus…

Also, the questions I might ask are relevant to my own situation and not necessarily the next persons. I might not have the knowledge or experience which is one of the main reasons why I post in the groups. Furthermore, who knows, there might very well be someone else who will benefit from me asking my question and the valuable responses that follow…

All I’m saying is, next time you see a post from someone coming to a group (looking for help), don’t blow them off. If you can’t say something of value, don’t say anything at all…and just scroll on by. This is not an easy condition to live with, I don’t think I need to tell anyone who actually can appreciate it that, but there appears to be a need for it. I’m taking it upon myself to say it and hopefully get others to think twice before breaking anyone down.

This life is hard, we all have a go at taking the steering wheel in our own lives. Sometimes we get it right and other times…well, we need just a little help, patience and understanding.

If you are someone who has been broken down by the next person, I only have this to say to you. Don’t feel intimidated and most of all, don’t stop asking your questions. My friend and fellow blogger, Terence Brown of Help Grow Change, pointed me in the direction of this useful piece of advice, following a negative comment or two.  I hope it helps you in some way…

Dear critics: As fellow human beings, we love you, even amid your suffering. But you can take your criticism and shove it up your ass“.

Are you guilty of breaking down the next person? Is it possible that you do it without knowing or without intent? Are you possibly doing it because you are burying your head in the sand and don’t want to face your own fears so, therefore, put others down?

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!

2 Comments

  • minionmayhem514

    February 3, 2017 at 11:56 am Reply

    This is a great post. In order for me to be the best advocate for my daughter, I HAVE to ask questions. I don’t know firsthand what it is like to have hydro. Sure, I can ask the doctors and surgeons, and of course I value their opinion, but they don’t have hydro either. They can’t speak to how it personally feels when you have a hydro headache, or shunt failure. I value your blog immensely and I’m so grateful for my own hydro groups.

    • Skyewaters

      February 3, 2017 at 8:28 pm Reply

      Thank you so much for your comment. I’m glad it helps.

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