Hydrocephalus: Loneliness, a feeling which consumes you when you have an invisible condition. But, have a look at this!

Hydrocephalus: Loneliness, a feeling which consumes you when you have an invisible condition. But, have a look at this!

The very word “invisible”, speaks volumes if you care to notice it.

To look at a person with Hydrocephalus, you wouldn’t know they had it, unless they’ve told you, or the signs are unavoidably visible. Also, many of us, live our lives feeling very isolated and most of the time, very lost. It would probably be hard to understand but, even if we do have support, the lack of understanding or empathy can still isolate you. For a majority of us, we don’t have a good support system – medically, personally or otherwise. This in itself, can and does provide some rather challenging circumstances. However, somehow, we tend to navigate through these uncharted waters because we have to – we have NO other choice.

Sometimes we get tired of the repetition of trying to “defend” ourselves and convince others that we are not faking. It’s truly exhausting. I’ve certainly learnt to choose my battles more carefully…

I know what it’s like, after receiving your diagnosis, to be thrust into the world of loneliness and uncertainty, which unfolds before you. So many questions and more than anything, the yearning for someone who understands and can share the load. Like with anything really, people might circle around you in the beginning, to show their support. Then, slowly but surely, they start moving away and so too does their support.

On some level, I suppose, this is “normal” behaviour. But, on the flip side of that, you may find some relationships growing stronger because of it…

Just having someone, who can actually relate when you’re symptomatic, makes the world of difference. I’ve had so many times when I have one of those headaches where you’re not sure if it’s going to escalate or not. Telling someone, “I’ve got a really bad headache” (feeling helpless with worry that it might be something more), and have them respond, “Yeah, me too…I’ve had a headache all day”.

Knowing the difference in your headaches because you have Hydro and they don’t, knowing just how potentially serious yours is in comparison to theirs, makes me want to spit bullets sometimes.

It’s easy to think that there’s no one out there and that you’re on this journey all by yourself. The people in your life don’t always get it. For some, this is the kind of thing, which will send us over the edge but for others, well…we grow stronger as a survival mechanism.

In 2016, I had a chat with a colleague and friend about my condition, Terence of trnc.co. The “co-parent” who helped me “give birth” to my brainchild (pun intended), Skyewaters.com. He was instrumental in the start of my blogging journey. Looking back now, I’ll forever be indebted to him for his support, encouragement and (mostly) technical expertise.

I didn’t see much point in doing it nor could I have anticipated anything coming of it. I also remember thinking:

Who will my audience be? Surely there aren’t that many people who would want to read about Hydrocephalus”.

But now, a few years later, the stats speak for themselves. I’ll let you be the judge of just how far across the world Hydrocephalus reaches. All the pink shaded areas are where people have connected from, across the globe, reading my blogs. The kind of people who are either themselves diagnosed with it or have a person in their life who has this condition. The figures have just about doubled with each passing year and, continue to do so.

So, if you ever feel alone, just remind yourself of this world view. And, if you ever feel like you wish you could do more, consider this. Your comments on the site, not my social media posts, are what others will see, especially if they’ve just been diagnosed. Your words are there to help, inspire, validate or ease their fears and anxiety – and, can make a difference. In this way, you too can help and give back to the Hydro community!

Honestly, I don’t quite know how I feel about the stats myself…a bag of mixed emotions really! (Maybe a post for another day).

If anything, I hope it gives you, insight into just how far spread this condition really is. We are not alone. It’s more common, and affects more people, than you know!


  • Bethany Bacon

    October 21, 2019 at 4:15 pm Reply

    I can completely echo Cindy’s comment! Thank you for being there as someone who can truly relate!! I appreciate you more than you know!

    • Skyewaters

      October 22, 2019 at 2:36 am Reply

      Thank you for your kind words. You’re welcome 💙


    October 19, 2019 at 10:29 pm Reply

    It was 2008 when I started to really show any symptoms of any consequence. I would spend more time in the ER, eventually leading me to have to leave my job in December 2010, age 44. I have not been able to work since then and am now on full-time disability. I can no longer drive and have to rely on family/friends or a newly found transportation service. Like some of the other posters, until I was diagnosed, I did not realize the condition was as widespread either. It certainly helped me with the feeling that I was some kind of “freak”. However, some 8 years after my surgeries, shunt placement, hematomas and shunt occlusion, I am left home alone while my wife works, having to be aware that at any time, or any place, I can suffer “spells” or “episodes” which to the untrained eye, look, act and sound like seizures. But they are not! Some episodes are strong enough to render me exhausted, unbalanced and unable to walk very far. I do at times, get headaches, but no medicine helps. I just have to roll with it. For the most part, I can handle the isolation and loneliness, but then at times, it is crushing. Add to that, periodic times when I lose speech and am unable to talk. That has lasted anywhere from 5 minutes to 5 hours and again, comes and goes pretty much when it feels like it. I read blogs, articles hoping to come across anything new. So far, very little, however, I still hope!

    • Skyewaters

      October 20, 2019 at 7:20 am Reply

      It doesn’t seem fair really…
      I’m sorry you’ve had such a hard time with it. Somehow being hopeful just has to be enough, even if it’s just to get you through to the next step. Take it one step at a time.
      Thanks for your comment💙


        October 21, 2019 at 7:06 pm Reply

        It is more than ok. I would be lying if I did not say it has been an adjustment and there are days when I confess that I do get low, but I slowly come around and work my way through it. I consider the alternative. Curled up in a ball stuck in a corner against a wall. But, that just won’t get me anywhere and even though days are a struggle sometimes, I remind myself that I am fortunate in that I at least woke up this morning and not everyone could say that! It calms me that maybe my situation is not quite so bad after all!

        • Skyewaters

          October 22, 2019 at 2:37 am Reply

          That is too true!💙

  • John R Regina

    October 19, 2019 at 4:10 pm Reply

    I was born in 1965 and the whole time I was growing a normal life other then headaces and general hydro issues. I was a stupid teen ager doing things that no one should but especially with hydrocephalus. Durning my teenage years alot of problems with drugs and emotional issues. Got kicked out of school or left at age 16 . Never growing up meet anyone with hydrocephalus. Now I see alot of people on Facebook but have really met some of them. Always felt I was the only one with hydrocephalus. I am now 54 and 2 kids and wife. I work a full-time job and feel pretty good most of the time. Thank you for letting me share.

    • Skyewaters

      October 20, 2019 at 7:14 am Reply

      As the saying goes, “You live and you learn”.
      Facebook certainly is a great resource for certain things. Thank you for sharing John. All the best to you💙

  • lizard11366yahoocom

    October 19, 2019 at 5:16 am Reply

    I felt like I had an orphan disease until I got online soon after my daughter was born. I was 24, and I’d spent my whole life wishing that someone else knew what it felt like to live with hydro. Then, suddenly, I had a network of hundreds that has since grown to thousands of people who truly “get” me. It’s more awesome than I can ever describe. 🙂

    • Skyewaters

      October 19, 2019 at 5:44 am Reply

      It certainly makes the journey less lonely.
      I’m glad you have a network. That’s awesome! Thanks for sharing 💙

  • Cindy Hirsch

    October 19, 2019 at 3:17 am Reply

    Thank you once again for crawling into my head and expressing my thoughts exactly. I recently “shared” my plight on social media with the recommended hashtags. I too, am a member of this club, not by choice and the worst symptom for me besides the 3 failed shunts and the chronic pain for a year is the isolation and loneliness. It hurts my head to talk most days and being in noisy environments is torture. This condition is also negatively affecting my mental health. Your blog is about the only thing that makes me feel less alone. Thank you for your words and insights.

    • Skyewaters

      October 19, 2019 at 4:31 am Reply

      Thank YOU for your comment, you are most welcome. I can certainly understand the effects the condition renders. Stay strong 💙

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