A defining and disappointing aspect of having Hydrocephalus, is when those closest to you disregard the effects of the condition.
I wonder if there comes a time when family members in the same household possibly just reach a point where they’ve had enough.
Enough of your moaning, complaining of how bad your headaches are (especially compared to the ones they get), moodiness or maybe even see your running to the Emergency room as a constant state of paranoia. They could also be left wondering, “Just how serious is it really?“. I’m sure, to them, it looks like a case of the boy who cried wolf.
Lord knows, I’ve had an uphill battle since diagnosis with medical professionals questioning whether I actually have Hydrocephalus or not, scans showing there’s nothing wrong and being told “We don’t know what’s wrong with you or what more to do for you“. I can only imagine that anyone else in this position is probably fighting just as hard to keep their symptoms at bay while fighting the system, which does fail some of us. And, feeling helpless due to lack of support and understanding from the one person or people who should care more than anyone else.
I know that there are parents, siblings and children who actually do give a shit about the person affected by this condition. This post is not about you but quite the opposite. I’ve heard from people saying that their parent/s actually believe the doctors when they say they’ve cured their child. Firstly, there is no cure…if there is, I’m sure the millions around the world (not just in America) would be first in line. I sometimes wonder if that number is quite possibly closer to a billion across the earth…it wouldn’t surprise me.
Furthermore, I’ve also spoken to a sibling who feels that his brother “Could do more and makes things worse than they really are“. His brother also has Spina bifida amongst other medical issues. (I had to keep my cool with this one). Having experienced the symptoms Hydrocephalus unleashes on a brain/body, I’m definitely not in the siblings corner. Maybe I’m a little biased but, I will stick up for anyone with Hydrocephalus regardless of how Bearable or Bad they have it. He explained that his brother is stubborn as a mule and basically listens to no one. I thought to myself “Well done to your brother“. No one should have to bow down just because they have physical or mental challenges. We all want to feel normal (whatever your definition of that may be). I suppose, slightly in the siblings defense, it doesn’t make it easy to deal with a hard arsed person but…meh! (Says she who is most stubborn of all 🙂 )
As an example, I’ve previously justified my own husbands reaction and said that it’s driven by love. He is one of those people who believe that I’ve been “cured“. Pfft!…*sigh*
In all fairness to myself and, if I have to be honest, it’s unacceptable. It’s sad and leaves me feeling a void I wish could be filled with someone who actually gives a shit enough to not stick his head in the sand when the going gets tough. The support and awareness of this condition, needs to be there 100% of the time, if not more.
I’m tired of making excuses and saying that we all handle “life happens” moments differently. I should be able to expect that the response from him would be better. I don’t want to sit huddled in a corner wishing secretly that he will pick up on what I’m thinking.
Even my immediate family, none of them ever ask how I’m doing in regard to my Hydrocephalus. They don’t know anything about it. Their lives are remote and, uninvolved is probably the word I would use, as far as my condition goes. I previously wrote about the different love languages, this would be a good example where they clearly don’t speak my love language. Maybe their lives are just too full of other stuff (more important to them) and maybe, they’re just doing the best they can to survive in this crazy world. Maybe I’m wrong…maybe I should go out of my way to make myself heard and tell them.. As a sister and daughter of my family unit, I feel as if it’s just not that important to the rest of my family. Maybe I should harden up and just stop expecting others to care…
It drives me nuts to know that I’m in this alone for the most part. I’m not one to feel sorry for myself, in fact anyone who knows me, will probably say I’m very independent. This is purely because from a young age, I had to learn to fend for myself. My life has not been ideal and in saying that, I’m not exactly looking for sympathy…because life happens and we carry on.
I think the least any close relative can do for someone with Hydrocephalus is to realize that this shit is real and not dismiss the way it affects them. Doctors are great but they are human and do get it wrong. Be the person they can lean on and be the one who brings the most comfort with a simple kind word or weight lifting embrace. I for one know that having my husbands arms wrapped around me when I’m not feeling well, literally makes me feel like the burden and pain is lifted tenfold…he knows this (because I’ve told him) but I don’t think he understands.
Maybe it’s time to ask (sincerely) “How are you doing?”…before it’s too late…
Are you in a position to alleviate the pressure or burden of Hydrocephalus weighing down on your loved one?
Are you a loved one who feels like your close family could possibly step a little closer to the plate?
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Thank you for taking the time to read.
I blog about Hydrocephalus and Selective Mutism to give a voice to the millions of people around the world with this condition and disorder. 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!