Attitude Check

     Attitude... it can make all the difference.  When speaking of Neutropenia and trying to inform those assisting with our care or the care of our children bad attitudes simply cause a traffic jam where education is at the bottom of the "to do" list.  Personally, I am more likely to listen to someone if they speak to me in a way that doesn't cause me to feel like a complete idiot.  I believe that's a two way street.  How can I complain about some one's lack of knowledge if I fail to educate them in a way that they can learn?   Neutropenia is frustrating to put it nicely!  If it's frustrating for me as a patient/parent of a patient then I can only imagine the frustration level of the one left to care for us who has never been informed.  It's easy, as a parent, to let emotions run high.  It's easy to just get pissed and expect medical professionals to know it all.  Fact is, they're people too.  What we have and live with daily may be our "normal" but it certainly isn't theirs.  I'm about to tell my age here (smile)...  I was born with Cyclic Neutropenia 30 years ago.  YIKES!!!!  I turned 30 in December, like last month December, so I haven't seen it on wide screen till now HA!  I say all that to say it's taken me a long time as a patient and eventually as a parent living with Neutropenia and all it's shenanigans to find a way to speak to health care professionals that doesn't automatically yield defensiveness.   If we are to make meaningful strides in Neutropenia research and health care world wide for neutropenics then it is imperative that we learn to speak with the respect that we so freely demand.
    I am in no way saying that some situations don't demand a fight.  I've had my fair share of fighting for appropriate medical care.  I just believe that it shouldn't be our first teaching tool.  When it comes to my own hospital admissions I typically end up educating every health care professional that comes into my room on some level.  Obviously, Neutropenia is related more so to cancer in our medical community, so when we require admissions we are mixed into the cancer population.  I cannot tell you how often I've said "but I don't have cancer" in response to a physician or nurse asking what my cancer diagnosis is.  Pure CRAZY if you ask me but again.... they didn't know!  If I want them to listen and if I want them to know and to be interested in more then I have to take a step back.  Easier said than done, I know, especially in the midst of an episode.  It's not impossible.  We live with neutropenic conditions that are "hard"...so add education while admitted to the list.  At the end of the day it's us who benefit anyway.  We will always require medical treatment.  If we establish a relationship that respects them then they'll respect us and as the knowledge grows the fights will lessen.  All of this said I do understand there are some situations that just call for a mama bear.  Never be afraid to fight for your baby!  You know your child best and are your child's best advocate hands down.  This is definitely one of those posts where I've got three fingers pointing back at me...it's tough for sure.  You can make a difference.  Speak up and most importantly teach your child because one day they'll be required to fight for their own medical care.  Teach them to speak and educate in a way that demands respect.  You got this!  As Joeli would say "Peace out, see ya on the flip side"!