Hydrocephalus : An invisible illness that’s painfully visible to me

Hydrocephalus : An invisible illness that’s painfully visible to me

What no person with Hydrocephalus wants or needs to hear:

Most people I see are in a coma and…you look fine to me” – Neurosurgeon

So does that mean I need to be in a coma for you to take me seriously?

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I get bad headaches too” – Family, colleagues and acquaintances

I don’t doubt that but does yours make you feel like your brain could explode or require surgery?

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So you’re cured now though…right?” – Family, colleagues and acquaintances

No, because this condition does not have a cure.  Brain surgery is the only treatment option.

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“You sure do love doctors” or “You like the hospital don’t you?” – Family

Are you for real?

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Do you really want another operation?” – Family

Sure, I’ve got nothing better to do.

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Why can’t you just believe the doctors when they tell you there’s nothing wrong with you?” – Family

Because doctors aren’t always right and I’m the only one who knows my body and how I feel.

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So how exactly did you develop Hydrocephalus?“(after explaining the medical history behind it) – Neurologist  / Neurosurgeon

Ummm…I was playing with…No, wait…what?

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I think you’ve been overusing pain medication but with my treatment plan, I’ll fix that for you” – Neurologist

So you think I’m a junkie?

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Meningitis can’t cause Hydrocephalus” – Neurologist / Neurosurgeon

Tell that to the obstruction in my brain.

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I would strongly recommend you see a Psychologist and take these anti-depressants to help with the pain” – Neurologist

So a junkie and a mental case…Nice (Not)

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I am not going to operate on you just because you ask me to…” – Neurosurgeon

The fact that I asked you to probably says a lot in itself.  No sane person would ask for a brain operation.

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You have slit ventricles and could go into a coma…but, you just have to remain vigilant” (and then you get ignored when symptomatic) – Neurosurgeon

Just how vigilant should I be?  Is that what you told all the other people you “normally see”, already in a coma?

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Your memory shouldn’t be affected, I think you’re probably just stressed” – Neurologist/Neurosurgeon

Aaah!  The stress card makes it’s appearance.  Shouldn’t, wouldn’t, couldn’t…but it is.   So what now?

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We are not going to take a moderately functioning person and stick a shunt in them just so that they can be reduced to a lower quality of life” – Neurosurgeon

Because my “quality of life” right now is absolutely brilliant!  Right?

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I don’t know what more I can do for you…” – Neurologist / Neurosurgeon

Let’s start with admitting you are not a subject matter expert but would be open and willing to explore the options with me, instead of leaving me hanging.  I’d respect you more for that.

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I could literally go on and on but the list would just be too exhaustive…

I know for a fact I’m not alone in saying this:

The things I’ve listed above have become the norm and hearing them, despite being told the same thing over and over, does not make it any easier.  There are many people in this world suffering fates beyond their control, illness, disease, crime, cruelty, etc.  It’s evident that there’s not much we can do about it (well, at least not anything within our control).  That does not mean that even though people, unaffected by your own circumstances, should not at least be a bit more tactful in their approach and response.  Especially if those same people have a medical degree behind their name.

Living with this condition, knowing what I know about the effects and possible outcome (sometimes I wish I didn’t), I can’t help but feel overwhelmed by it all from time to time.  Admittedly though, there are times when I just do as those around me do, “stick my head in the sand” or “look the other way” and “pretend” it doesn’t exist…momentarily though.

It’s easy enough for the next person to say “Forget about it and live your life” or “Don’t become obsessed by it or let it own you“.  We all deal with situations differently and no person has the right to tell you how to feel or react.  It’s good to try and inspire others or “think” that your formula for successfully overcoming something in life will work for someone else.  But, that’s not always the case because we are all different.  Our lives, commitments and responsibilities differ…we are NOT all the same.

My eagle-eye view as Skyewaters gives me a (very small but significant) picture of the world and the pain that’s out there.  It makes me question so much and it’s perfectly clear just how visible this condition really is.  You just need to adjust your mindset and possibly change the way you see the world…

Having started this blog, connecting with others and either giving or receiving comfort, does not allow me to simply ignore it or look the other way.  It’s an invisible condition that’s painfully clear to me…I wish I could just zap it away forever.

If you have been at the receiving end of this, I have only one thing to say to you.  Keep on keeping on, I know it’s tiring and can hurt but don’t give up on yourself – because you are worth fighting for.

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!

4 Comments

  • Ginette

    October 11, 2017 at 2:25 pm Reply

    Everything you stated, I’ve heard over and over throughout the years. After every shunt revision, people see how much better I feel and really believe that I’m cured. They always seem perplexed when I explain that the shunt is a mechanical device prone to failure and that it’s not a cure for my condition but that I’m certainly hoping for the best outcome—that of being surgery-free for many years. Every time that, as an adult, I had a recurrence in daily headaches and just knew there was something going on with the shunt, I had family and doctors questioning my certainty. It’s to the point where I cannot afford to be surrounded by anyone who doesn’t trust my own wisdom.
    Thank you so much for so eloquently putting to words all of your experiences with Hydrocephalus. It’s important for those of us who live with this to know there are others out there who really do understand.

    • Skyewaters

      October 11, 2017 at 7:09 pm Reply

      It certainly isn’t easy so I empathise with you. Thanks for you comment Ginette.

  • Anonymous

    October 11, 2017 at 11:49 am Reply

    You made a comment about slit ventricle and coma. What do you mean by this?

    • Skyewaters

      October 11, 2017 at 7:07 pm Reply

      I had a consult with a Neurosurgeon 2 years back and that’s what he told me. I blanked out mentally at the word “coma” and didn’t pay much attention to what he was saying as it threw me. In one instance he was explaining about people with slit ventricles as if he was just info sharing and then he turned around and said “Oh, I see you have it too…so just remain vigilant”.

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