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!