Hydrocephalus : Is there really better care in the world…

Hydrocephalus : Is there really better care in the world…

I used to think that there must be better health care in the world, especially in places overseas (which could literally be anywhere depending on where you live).  In fact, I moved countries specifically because people professed this view and seemed convinced beyond a doubt that better medical care existed outside the borders of my home country.  I left not because health care is “free” or because I wanted to “drain the medical system” (had I known what I know now, I would have stayed put and clung to the one doctor who gave me the best care I have ever had on this Hydro journey thus far – BUT, I remain realistic about the other reasons why I left.  Besides, it’s easier for others to say “go back home” than it is for me to do).  In hindsight, I guess I didn’t really think it through, I may have been too driven in my quest for better care.

I did, however, leave because I sincerely believed “those people“, immigration agents and uninformed close friends and family, because I wanted the best care for me.  Nothing wrong with that…And, I say they are “uninformed” because I fully believe that anyone who hasn’t had the need to depend on medical help as I/we have, just won’t see anything wrong with the care that’s provided.  So, to this end, I’ve had strange looks, been made to feel “there must be something wrong with me” and/or maybe that I’m faking it or just plain crazy.  I’ve also heard strong opinions to challenge what I know as fact…

There will, however, always be the exception to the norm.

Since starting this website and blogging about Hydrocephalus (among other things), I’ve had the privilege of connecting with people across the globe.  I love the fact that what I have to write, is something others can relate to, it brings me a sense of fulfilment that money can’t buy.  I think the biggest lesson I’ve learnt from all my interactions, is that there doesn’t seem to be a “better place with better care” for this condition.  I believe this is where my statement above is verified and I feel justified in saying it boldly.

How can I say this?  Well, it’s proven because of a common trend and too many similar complaints from these very connections, either directly or indirectly.  This both brings it home to me and really makes me sad at the same time.

I wish there was something I could do…

I keep saying that I wish we could get all the Neurologists and Neurosurgeons into one room and get them on the same page.  If I could make time stand still, snap my fingers and do exactly that, I would.  The thing that gets me during those times of feeling “crazy” or that I’m imagining my symptoms, is when I read about someone else’s similar experience, a post in one of the Facebook groups or more importantly, the responses from people or family members (of children, siblings, parents, etc.) who have the condition too.  Their responses not only give me hope that I’m in fact not crazy or imagining it but, sometimes serve as a vital lifeline.  It re-iterates that we really do know our own condition better than some of the medical professionals we deal with.  Don’t misunderstand, I know there are very good doctors out there who are kind, caring, professional, attentive and responsive…the ones who actually listen to their patients.  I thank God for them…

In this, is where my next line of questions lie.

Why is it that we can fully comprehend when someone describes their symptoms and offer suggestions or validation?  Why is it that understanding and sharing our experiences, evokes displays of caring, compassion and just a general supportive network?  Just recently, I had someone (you know who you are), offer to get her doctor to do a Skype session with the surgeon I was seeing, in the hope of driving the point home that he might need to actually listen to my concerns…it’s heartwarming! 🙂

I ask these questions because on some level, it’s what I would expect from any medical professional when entering their consultation room.  I don’t want to make excuses for them or justify their pride/ego, inability to understand, arrogance or blatant disregard for symptoms or my feelings as a human being.  I want them to see me as a person, mother, wife, daughter and so much more than the reduction to just another patient who complains about “nothing“.

I’m taking a stand and saying IT’S UNACCEPTABLE!

So as I started out saying, “I used to think that there must be better care in the world“, I no longer do.  I think we are just all in this together and as long as we have each other for the support, validation or empathy…it makes it that much more bearable.  Because, it means that someone, somewhere actually does care…

Feel free to leave a comment on my website under this post, your comment or input might help others who pass through.  And/or, share this post.

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  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!

No Comments

Make yourself heard and contribute to the conversation

This site uses Akismet to reduce spam. Learn how your comment data is processed.