The Secret Life of the Chronically Ill….

Last week we woke up to a winter wonderland!  It was memorizing, and this is coming from a gal who doesn’t really like snow.  Every year I try to play in the snow with my children.  I want them to have memories of me sledding with them, building snow men, etc.  So, this year was no different.  I put on my snow clothes and walked out the front door.  I was immediately greeted by my daughter beaming with joy that I could play in the snow with her.  We took pictures, made snow angels, and I even rode(extremely slow) on the four-wheeler with my son.  Mind you, all of this took place in a twenty-minute increment.  I could feel symptoms coming on, so I headed inside leaving them to play.

Here we are playing together..image

 

And here is the reality of how I am able to function.

imageimage

I show this only to allow a better mental picture of what everyday looks like…icepacks, numerous meds, fluid, and monitors.  Some patients have to take much more than I do and others less, but the common factor is we pay for every move we make.

My reason for sharing this is simple.  So many individuals suffer in silence because of the stigma attached to invisible illness.  Whether they fear being judged as a hypochondriac or mentally unstable, many choose to keep their illness hidden from others.  I have POTS for example, and much of the time by looking at me, you cannot tell that I am battling a cruel and debilitating illness.  I constantly hear how I do not look sick enough.  Now, don’t get me wrong, I’m not complaining that I do not always look sick.  But I am speaking for a large group of people when I say, “You don’t have to look sick to be sick.”

Have you ever noticed a family that looks impeccable every time you see them? It’s almost as if they have walked out of a magazine.  But as you get closer to them you see the mom and dad are constantly fighting and their home life is a wreck.   You would have never known had you not taken a closer look.  That is what an invisible illness is like.  From the outside all appears fine, but internally our bodies are fighting daily to just find a semblance of normalcy.

I am one of the lucky ones who has not been told it’s all in my head or if I would just try a little harder I could get better.  I am someone who has an incredibly loving husband and parents that are fully supportive.  I have friends that may not fully understand my illness, but support me anyway.  Yet daily I am in contact with women of all ages who have  lost spouses, friends, jobs, and hope because of a chronic illness.  Whether the weight of the illness was too heavy for spouses, or the inconsistency of the illness pushed friends away, these individuals are lonely, broken, and desperate for answers.

One of the biggest misconceptions about being chronically ill is that we are attention seekers.  Sure, some may like the attention or drama that comes with illness, but let me assure you, most of us would do anything to hop off this roller coaster!  We would jump at the chance to resume our normal life.  I realize I am not speaking as much for myself as for those who feel their voices no longer count.  Those who believe they are completely alone and are losing a bit more hope as each day passes.  You may be surprised if you sat with them and listened.  Their deepest desires are like everyone else’s.  They desire to be loved and accepted for who they are.  They cannot control the war going on within their bodies.  Yes, it may take more time, effort, and grace, but these individuals are silently crumbling internally as they watch their circumstances crumble around them.

Unfortunately, chronic illness does not follow  a schedule nor is it responsive to our desires.  It does not have a time frame in which we are working within.  No, chronic illness is just that…chronic.  It comes more than it goes.  It over stays its welcome and has no compassion for those suffering.  I truly believe if others understood a bit more, we could see those with broken bodies not feel like completely broken souls as well.  In this life, we will all face circumstances that are not desirable.  We will each fight silent or invisible battles at some point on our journey.  For some of us, ours just happens to be illness.  I encourage those who are fighting this battle to keep going and never give up.  I encourage those who may not fully understand the limitations we face to take a moment and look a little closer.  As for those who are our support system, I cannot thank you enough!  Your love and compassion are not lost on us!  We hope to extend the same love and grace to you as well.

 

 

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