This post is closely related to one of my previous Hydrocephalus posts, We are not faking…
My teenage son made a comment yesterday and said to me. “Why do you post stuff like that on Facebook? It looks like you’re…looking for attention“. (To put it into perspective for you, there’s one real difference between us – he is a private person and I’m more outspoken about what I go through. My blog is about sharing in the hope of educating others – something he doesn’t understand…yet).
I had no real answer for him, so I just looked at him and said “Because it’s all true. Let me answer you like I’ve heard other people say, it’s my Facebook and I’ll post what I want to“. (I laughed despite feeling a bit hurt by what he said).
He just shook his head at me as if I’m crazy (as teenagers do) and dropped the subject.
The things I post or share on Facebook, are messages which I can relate to or empathise with. Unbeknownst to him, it might not even be about me at that point in time. It might be that I had just had a conversation with a friend who is going through a bad time or someone who I know is dealing with an invisible condition like Hydrocephalus, Fibromyalgia, Depression etc. It might be me being a voice piece for those who don’t have it in them to say how they feel.
It might even be a hidden message which I need those closest to me to read, hoping that they change the way they treat me. So…yes, sometimes it might even be that I AM LOOKING FOR ATTENTION though, most times, this is not the case.
The reason really doesn’t matter…does it?
Furthermore, living with a condition that others cannot see with the naked eye, makes me feel helpless, to say the least. It’s a constant spin of convincing others that you’re not feeling well. My own family, living in the same house as me, sleeping in the same bed as me…don’t get it. Therefore, I don’t expect better from others outside my household.
I’ve said it before and I’ll continue to say it, they have no sympathy for me. Sure they love me, sure they hear me complaining but there is nothing they can physically do to make it better. I KNOW THAT. They, just like so many others, don’t have the understanding and it’s not for lack of information from my end. I can even be understanding in this regard and say, maybe they just don’t know how to deal with it – but does that have to mean that I pretend as they do, that the pain doesn’t exist? (Some days, I wish it were that easy)
I swear, there are days when I just feel like a loony person who’s making this stuff up. I’ve been accused of “enjoying going for operations and being a druggie because of all the pills I take“. They can’t see the pain so the only explanation that makes sense in their brains, is “you must be faking“.
Just as I can’t tell you what it feels like to “feel good” for one week at a time without feeling unwell, you probably can’t tell me what it feels like to be sick for the majority of your life. (I’m not talking about the general flu or a migraine unrelated to a chronic condition). We just don’t relate to each other in that sense.
I have friends and family, as I’m sure most people who read this do, with chronic conditions or diseases – suffering (too) in silence. Because I have Hydrocephalus, I may not know exactly how badly they are hurting but, I can certainly empathise and understand when they say they’re not feeling well. I wouldn’t wish this condition on my worst enemy so therefore, I bear it with a smile when my own child utters the words “looking for attention“. Because I will never want him to know what this feels like. I will never wish it on him, not even for a second. Maybe one day…he will understand…
Maybe when he’s reached a certain level of maturity…maybe when I’m dead (and, no, I’m not being morbid – just realistic).
I wish the people who have good health majority of the time, could appreciate what they have in contrast to those who haven’t been so lucky in life.
The fact is, many people among us, walk around with pain and discomfort they cannot control. They grin and bear, they soldier on as best they can. The last thing any of them need is someone…anyone being a (fill in the blank as you see fit) about it.