It's not like the movies

I don’t know about you, but we certainly have noticed quite a few books / movies that are about individuals with some sort of illness.  Now, if you look at these books / movies closer there is something pretty obvious about them.  They are pretty much all romances, and let’s just say the two of our life experiences do not match up (at all).  Today we decided to examine a little deeper how little our lives relate to these stories that are beloved by many.  We aren’t saying don’t read these books, we are just saying from the point of view of someone with a chronic illness, there is not a lot of things in common.  

  1. Chronic Illnesses aren’t glamorous:
Chronic illness is more than a label.  It is something that takes over your life, and the lives of everyone around you.  It is days of feeling too sick to get out of bed.  Days of taking a crazy amount of medications, and some including some not so fun side effects.  There are countless appointments which lead to more tests, pokes, and medications.  It for sure isn’t all sunshine and rainbows, because chronic illness life is hard.  

  1. There is not a lot of freedom:
In some books / movies people are able to waltz around the hospital at will, or
fly around the globe.  The reality is that most of the time in the hospital you are
waiting for the next doctor / specialist / nurse / etc. to come in.  I mean, you
might get away with a walk around the floor, but they will find you and drag you
back to your bed if they need to.  And if we are being honest, some of our
doctors would freak out if we decided that we wanted to fly across the globe
on a whim.  We are tied down by medications, treatments, appointments, and
More.  We aren’t saying that we can’t go on vacations, because we do at
times, but they have to be carefully planned, if not approved.  Basically
meaning that we cannot plan a vacation the night before.  

  1. These fairy tale romances aren’t typical:
Again we aren’t speaking for everyone, but at least in our experience dating
and relationships are hard with a chronic illness.  It’s hard to deal with a chronic
illness, and we understand that not everyone is cut out for dealing with that.  
Now we aren’t saying that we are swearing off love forever, but it’s a bit hard to
find “the one” when you are in and out of the ER.  In these books / movies there
are characters younger than both of us being able to navigate the world of
chronic illness while still being able to have the happy ending.  Again, people
can find love, but love isn’t like the movies.  

  1. Hospital life isn’t all fun and games:
Hospital life is boring.  Hospital life means that you don’t sleep.  Hospital life is
being poked and prodded every four hours (give or take).  Hospital life is full of
white and tan walls.  Basically, hospitals aren’t the most fun place to be.  You
spend a lot of your time attempting sleep, watching hospital TV, and trying to
entertain yourself (ex. coloring books).  You might have an annoying
roommate in the hospital, or you may have a resident that you would love to
be rid of.  The hospital is basically a waiting game, and your life is put on hold
until someone decides to discharge.

  1. Acceptance is hard:
Acceptance of a chronic illness does not come overnight.  It is something that
takes time, and that time is different for everyone.  And you are not the only
one tasked with accepting this.  It is placed on the shoulders of your family
and friends as well.  It’s not easy in any circumstance, if you are born with
the condition, or not.  It is still an uphill battle to try to come to terms with the
Diagnosis.

Now we aren’t saying that all portrayals are 100% incorrect.  We are saying that this is not the same as the lives we are living.  We aren’t going on crazy vacations on a whim, we aren’t finding romance in the waiting room, and we aren’t having the time of our lives in the hospital.  Basically, this is the life we are living because it’s the only one we have.  Yes, we try to do as many fun things as we can, but it still isn’t like the movies.  After one hospital trip we get the promise of another, not an automatic cure.  We do not live glamorous lives, we live a life that is a lot of the time focused on our condition.  For example, if you have an appointment that you need to go to, you can’t skip it to go out with friends.  If you are having a flare, you probably are going to not want to get out of bed, not get all dressed up to have a day out.  It’s the little things that make the difference here, and that’s what we want to draw attention to.  

WE BELIEVE IN YOU!

-Nemo, Tremors and Secret Agent Puppy

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