Chronically Misunderstood…A Day in the Life of Chronic Illness

I have often wondered why chronic illness receives intensive scrutiny.  If I have strep, no one questions my diagnosis.  But chronic illness sparks a debate containing presupposed ideology from all sides.  It’s as though a lengthy explanation is mandatory.  Unfortunately for many, this intense scrutiny (often given by close friends and family) leads the patient to retreat, rather than provide an explanation.

I do not point a finger of blame on anyone simply because each situation is different.  There are those who will never believe our suffering is authentic.  If you do not look sick, you are not sick.  Although these presumptions are inaccurate and biased, we must choose wisely how we respond.  Engaging in a debate with someone who doesn’t want to reconcile or understand only depletes our energy supply. I realize the pain is intensified when family and friends are involved.  But it is crucial to remember negative stress creates flares, and no one’s opinion is worth losing your health over.

By definition, chronic means, “persistent, continuing, long-standing, ceaseless, incessant, unending, lingering…”.  Chronic illness doesn’t follow a schedule or timeline.  It can hit any time, anywhere, and we just have to acclimate.  We may experience short reprieves from time to time, but words cannot express the disappointment one feels when a flare occurs after a moment of normalcy.  We find ourselves once again on our face sprawled across the literal and symbolic ground beneath us.  We become painfully aware of our limitations.  As the years pass, it becomes more difficult to press onward with the same zeal we felt in the beginning.  We are war worn.  You can smell the stench of the battle around us.  The haze becomes denser and the fortitude to press onward slowly begins to fade.  I mean sure, we are aware this is merely another bump in the road.  But when one’s heart is set on wellness, these bumps become more and more discouraging.

I personally am a fighter.  I don’t go down easily.  But I am human, and I too feel the piercing pain of each setback.  My tears flow when illness seems to engulf my life.  My heart’s desire is to live free  from debilitating illness.  It’s one thing to face a circumstance that can be overcome by merely implementing a plan.  It is altogether another plight when battling an elusive entity that is utterly impossible to define.  I have strategized, implemented and pursued numerous avenues hoping to find the solution.  Yet, here I sit no closer to a resolution than when I began.

Except…I don’t believe that to be fully true.  I cannot help it.  Even in the midst of the madness, I do have hope I am inching closer to recovery, remission, healing, whatever you want to call it.  I do believe I could be one step away from health.  It is what fuels me to keep going.  My children’s faces only intensify this hope and yearning for health while my faith is what sustains me.  Recently I have noticed a trend among many of my POTS friends.  We are tired and weary from this journey.  We are living with daily obstacles that could easily make us retreat in fear.

But our story is not over.  Even if we live the next chapters of this life chronically ill, all hope will not be lost.  We have been given the precious gift of embracing each moment.  We take nothing for granted anymore.  A shower is a luxury.  Leaving our home and enjoying a few hours out is an accomplishment not taken lightly.  We have been given perspective we may otherwise have never stumbled upon.  So although we may struggle with feelings of inadequacy and hopelessness at time, there is a warrior within each of us that knows giving up is not an option.

We are going to fall down.  We are going to face setbacks.  We are going to have moments or seasons of depression.  We need a support system.  Not one that constantly challenges the validity of our illness, but rather supports us as we walk this journey.  Our previous life no longer exists.  Just as we must come to terms with this reality, so do our friends and family.  It is not an easy transition for them either.  Both sides must give a little slack.        Don’t look back to yesteryear nor steep in the troubles of today.  In each life, a little rain must fall.  Finding life in the storm is a gift.  Perspective is everything.

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