Hydrocephalus: How much do you “lie” to appease someone else’s response to the reality you face, of living with ill health?

Hydrocephalus: How much do you “lie” to appease someone else’s response to the reality you face, of living with ill health?

“Hopefully by the end of this month all the medical drama will come to an end…”

I uttered these words to a friend today and heard a little voice mocking me, saying: “Are you sure about that..?“.  Truth is, saying these words is like making a promise, you know you can’t keep.  I’ve always had medical issues, for as long as I can remember or, so it seems.

Having an incurable condition on top of it all, makes this statement more of a “lie” or is it being hopeful..?

An incurable condition with the only treatment option requiring brain surgery to implant a Shunt or do an ETV. Treatment options, which can and do fail, outside the norm.  Unpredictable to the core, with no chance of putting you, or anyone else for that matter, in control of how and when it affects you.

Maybe it’s a way of giving the other person, peace of mind..?  Making them feel better about all you have to go through…I sometimes think others have a harder time facing your reality especially when it’s “less than ideal”.

Who knows..?

The reason why I responded the way I did, was probably because I know I have 2 final tests to do, amongst all I’ve had done in the last 3 weeks. A barium swallow on Friday, immediately followed by my Cervical Spine MRI.  The MRI is important and useful for the Neurosurgeon I’ll see on the 29th and, has me curious as well.  Whether it’s related to Hydrocephalus or not is irrespective to me right now (I suspect not).  Like I’ve said before, the test result may show nothing or it may show something.  In all honesty, I’m hoping she’ll give me the all clear and send me on my way.  The one thing foremost on my mind, and probably always will be, is knowing whether or not my ETV is failing.  However, I’m hopeful that she’ll take my concerns to heart and, at the very least, have the approach of doing regular checkups.

Further to this, my husband has on occasion asked “When is it ever going to end?”, after I’ve informed him of any of my latest “health” developments, with a sigh.  (A rhetorical question which I don’t bother responding to anymore).

I simply don’t have an answer to satisfy either of us.

Financially, all these tests have done a number on us and I feel absolute guilt about it all, not to mention time away from work.  It feels like I’ve held us back from so much, having to pay for the tests and care I insist I need.  It’s a damned if you do, damned if you don’t situation.  The financial burden just seems to be ever present, while trying to acknowledge the symptoms I’ve been feeling.

Fact is, I too have asked the exact same question but, not of anyone who can give me a definitive timeline.  I’ve asked it in moments of despair, moments where I’ve just about had enough of the inconvenience of living with ill health.  I’m over all of it…Not in a negative or depressive way but, more in a way of moving on from that, which I cannot control.

Being over all of it and having to do what needs to be done to get through, are two totally different things (in my opinion).  

Hydrocephalus might not always fight fair and can cause you to sit up and take note but, I sure as hell give as good as I get…

Something I’ll continue to do until death do us part!

So, for my own sense of sanity, I prefer to think of it as me being “hopeful” despite knowing the truth and reality of this life I call my own. I’ve already faced that a long time ago, in more ways than one and, that’s all that matters to me.

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!

6 Comments

  • Pam De Maagd

    April 10, 2019 at 10:24 pm Reply

    I have chronic pain because aging with a body damaged by hydro is not fun. When people as how I am I usually respond with “I’m fine…loosely defined.” I am not and never will be fine but I am OK with how I am so I guess that means I am “fine” in some sense of the word, I have a happy life and awesome support. Life is good in spite of hydro.

    • Skyewaters

      April 11, 2019 at 6:37 am Reply

      I fully understand and get that 💯💙

  • Don Clough

    April 10, 2019 at 7:44 pm Reply

    I l iie to my wife about how I’m feeling a lot. Yes, it’s wrong, but being honest starts heated discussions. To her, I’m just supposed to ignore how much I’m hurting, and press on. So, it’s easier to pretend that I’m fine.

    • Skyewaters

      April 10, 2019 at 8:30 pm Reply

      I can understand that Don. I wish it didn’t have to be the case for you. And, I pray it gets better💙

  • Philip Mastromonico

    April 10, 2019 at 4:27 pm Reply

    Our “lying” to appease others is a direct result of their inevitable skepticism of our symptoms. That skepticism MUST STOP.

    • Skyewaters

      April 10, 2019 at 9:39 pm Reply

      It’s a tricky one. Like I said, there are different reasons why people don’t divulge the truth.
      In this case, with my friend, I didn’t do it intentionally but it got me thinking afterwards. This may have been a good thing…

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