The Invisible Medical Condition

Bear with me but this is going to be a long post.  But please take the take to read through it all.

Unless someone just had a shunt revision and has a large incision on their head and maybe neck, no one would be able to tell that they suffer from hydrocephalus.  Due to that, I think many people believe we are faking or they think it's all in our heads.  Well yes, yes it is.  My head hurts constantly.

I can't speak for all hydrocephalics, but these are some of the misconceptions I have encountered in my lifetime.

Trust me when I say I am not being lazy because I need lots of rest. I have a brain injury.  Both my mind and body need rest for my brain to heal properly.  I literally can not function when I don't get enough sleep, as anyone wouldn't be able to.  I get very confused and can't concentrate on anything.

I am not a flake.  I don't mean to cancel on plans at the last minute.  Sometimes I have no choice.  A shunt failure can happen at anytime.  This is why I often respond to invites with maybe or I will try to be there.  I do my best to do activities in pain but sometimes it is too much.  Just know that I don't enjoy missing out on the fun.  It's difficult knowing your friends are out having a great time while you are stuck at home.

Just because you may see me smile in a picture do not assume that I am feeling good.  I have always tried to not show others how truly bad I am feeling.  That smile is just me trying to make the best out of a bad situation. 

My problems are not stress related.  I actually adjust to stress fairly well.  My problems are due to a medical condition within my brain.  The brain is a pretty vital organ in the body.  If it's not working right, nothing works right.  Also when I say that I am having new side effects from this condition, please accept it as that.  It's not stress related or side effects of medication I'm on or any other excuse you can come up with.  There are only so many times a person can take brain pokes before damage starts being done.  Especially if you have a brain bleed, which I did.  I don't understand why some people in my life try to blame everything else instead of accepting the fact that I indeed have some brain damage.

People should be kind to everyone and try not to judge others.  You never know what someone is going through.  Just because they look fine does not mean that they are.  I also firmly believe that no one should tell you how to feel about a situation.  Everyone is entitled to have their own emotions and deal with those emotions in a way that works best for them.

When I first started working full time after high school, I used to be accused of faking constantly.  People, not just previous employees, have talked behind my back, have told me how I should feel, and said to just get over it.  Their tune always changed when I had a revision though.  Kind of hard to "fake" brain surgery.

But I have decided that I need an attitude adjustment.  I am going to try not to be offended or bothered by incredibly insensitive comments that are directed towards me.  Let me tell you there have been many over the years.  I have come to realize that some people just don't understand and I don't usually let on to how bad things really are. 

Besides hoping to help my fellow hydrocephalics and sharing my journey, I started this blog to educate others on this condition.  Also relate what it's like to live with a chronic condition as so many people in this world do.  This is something that I will have to face for the rest of my life.  A lifetime of brain surgeries!  I don't know how much time I have on this earth so I have realized that I have to make the best of it.

From now on I won't allow people to tell me how I should feel and I will let the insensitive comments slide off my shoulders.  Sometimes it is difficult to know what to say to someone in a crisis.  I know at times I was guilty of that.

I know that everyone goes through difficult times in their lives and I have empathy for others.  Ask anyone who truly knows me.  I am genuinely concerned for other people's well being.  I am deeply saddened when I hear about my family, friends, and even strangers going through a crisis.  At times I may not be there for you as much as you'd like but know that it's not intentional.  I want to be there but often I can't physically or mentally.  I live in a land of confusion most days.  It's difficult for me to even write this post.  I won't say how long I had to spend on it. 

For me, the best comfort I can receive is when someone acknowledges how hard the situation is and cries right along with me.  You don't need to remind me of all the things I should be thankful for.  Trust me I know better than most people.  I am incredibly grateful for everything I have in my life.  Including the bad times because they make me grow and teach me lessons.

This year of 25 and still alive I have a lot to work on.  First and foremost I need the pressure in my brain to be corrected so I can function.  Then I need to focus on repairing my relationship with my son (which is already in the works), write my children's book (being an author is all I ever want to do in life), keep up on the blog, and work harder on my photography.  The last thing I need to do is let go of bitterness and anger at life.  After all, we'll all float on, okay?-Thank you Modest Mouse for seriously being my saving grace over the years.