Hydrocephalus: Some conversations aren’t worth having…

Hydrocephalus: Some conversations aren’t worth having…

Is it really worth having a conversation with someone who doesn’t understand what Hydrocephalus is all about?  (I’m  not talking about Awareness or education because that will always be worth it).  Someone who doesn’t get that this is a serious condition, requiring immediate action, in some cases?  Someone who doesn’t get your fears, anxieties and uncertainty of just keeping your head above water?

Someone who challenges you in your line of thinking, regardless of whether you’re being paranoid or not.  If you tell them that the doctors won’t help you and they ask “Why?” more than once (because we understand the reasons behind a doctors reluctance best, right?).  Or if they ask you “Do you really think you’ll get better treatment/care elsewhere?”.  In these situations, I’d say the conversation should come to an end and you should just move on.  Anyone in any situation will end up doing what they think is best for them.  We all do this, regardless of the fact that the end result is unknown Territory.  We live with the outcome – the consequences of bad choices or reaping the rewards of the best decision at the time because that’s life.

Some people (no matter if they’re close to you or not), will get it and others, well they won’t and can’t.  To me, there’s a clear difference between someone who simply can’t understand and someone who for their own selfish reasons, won’t.  I say “selfish reasons” because I’ve had a few of these conversations lately and discovered afterwards that that’s the reason behind the “Why?”.  Driven by “care and good intentions” or something else…whatever the reason, it really doesn’t matter.

As humans, we tend to do what suits us whether that be knowingly or unknowingly.  We follow our natural instinct and sometimes we forget…

We forget what it’s like for the next person and how to be empathetic, we forget to shut up when our opinion doesn’t count or is hurtful and, we forget that the next person is just trying to do life as best as they can, just like us.  We offer our opinion on something because the response makes sense in our heads and is pertinent to our own situation…but it’s not always right.

If you find yourself in this situation, end the conversation or change the topic.  (It doesn’t have to end in a fight either – use your own discretion).  Move on, especially if it doesn’t serve you well.  Navigate life with your condition to the best of your ability and, most of all, your best interests at the forefront of whatever decision you make. 

Besides, you’re the one who has to live with the outcome, not the person you’re talking to.


  • Christopher Sierra

    December 2, 2018 at 2:27 am Reply

    My Name Is Chris and I Was Born with Hydrocephalus. I Just Turned 44, Never Had A Shunt, but Have Had Many Complications growing up and even now due to the condition. My Legs aren’t strong, Poor Balance, Bladder Has gotten weak, that I am not able to hold From using the restroom for a very long time. Short term memory loss. And Always very worn out at times and have trouble sleeping at night. With All that, I have never given up, Graduated From Highschool, Completed 2 years Of College and received an associate’s degree. Struggled in getting jobs, but Managed To Hold Down a Job In The Medical Field For 15 years between 2 hospitals. Made Employee Of The Year At the first Hospital, Received a 10 Year Service Award At The Second Hospital. Was Used As A Role Model In A Program For Disabled Individuals Who walk a similar Path. Have Been Honored By 2 CEOs of different Hospitals. And Was Also A Role Model For Others at the Hydrocephalus Walk I Participated in Last Month In Tampa, Florida. I Also Recently Put together a little Rap Or Some Might Call a Poem About My Journey that was shared on 3 different Facebook Pages. I Am A True Survivor Who Has Never Given Up.

    • Skyewaters

      December 2, 2018 at 3:08 am Reply

      Wow! Your journey is inspirational. Thank you for sharing and, in turn, I pray it gives the next person some hope. 💙

    • Patricia David

      January 11, 2019 at 10:19 am Reply

      Hi Christopher, Im also 44, diagnosed at 18 and no treatment. I totally identify with you.
      I always suffered from headacheheadaches that some times prevented me from getting uup and going to school. I had hormones problems like I got my first spontaneus period in unoversity. I was given hormones to get them since 15. (We didnt have a Mri machine in my country or nearby until 1992 so we didnt know I had Hydro)
      I went to university and became a cpa. I have struggled in my jobs and even lost one actualy because of what I now understand was cause by hydro, (went to a client meeting in the way I falldown when crossing a street and Couldnt stand up for about a minute and was almost run by a car, needless to say the meeting was a disaster and I got fired) but didnt at the time. I was told by several doctors and even NS that I was asymptomatic so I didnt need to pay attention to mmy condition.
      Just about a month ago (after another episode that in a family trip to a caves park I just couldnt walk ) I decided that I cant just ignore it anymore and went to a new NS. Im undergoing tests now to see whether I could benefit from shuntig.
      Its a very hard struggle, ppl dont underdtand what is going 9n with me in big part because I just cannot explain it to myself

  • Liz Welker

    November 17, 2018 at 3:11 am Reply

    This is awesome, Skye! ❤ I have been fortunate not to have to deal with this much re my hydro, but I endured hell with 2 neuros and a gynecologist who nearly killed me at two different points in my life. Medical care isn’t always the best, even if you have excellent insurance. Both times, I had to fight my way back from the brink of death. It was a living hell I wouldn’t wish on my worst enemy.

    • Skyewaters

      November 17, 2018 at 4:07 am Reply

      I’m sorry you had to go through that. And, I fully agree with insurance not really being a factor in getting better medical care. It’s certainly been my experience too.

      Thanks for sharing💙

Make yourself heard and contribute to the conversation

This site uses Akismet to reduce spam. Learn how your comment data is processed.