My 'New Normal' With Illness Feels Anything but 'Normal'

A “new normal.” We hear this phrase flow with ease off the tip of well-meaning, albeit ignorant tongues and read the quipped typing from those who hold not the faintest of clues as to what that really means.

They do not know how a “new normal” is fought for and forged over days and weeks of struggling along with the lurking companions of anxiety and depression, silent but present. They do not know how a “new normal” often means loss of relationships or how often days stretch endlessly into nights that are frequently marked with loneliness and fear.

This “new normal” is learning how life will never be normal. There is no more steady routine or predictable plans or the carefree spontaneity that life “before” allowed.

Our “new normal” is filled with the reality of an endless parade of symptoms and treatments, side effects, doctors, scripts, labs, hospitals, tests, insurance claims and denials, disability fights, seeking to explain the unexplainable and pushing through the mental fog, pain and fatigue no one can ever really describe or understand.

It’s trying to convince a doctor that the pain is real and medication is not the enemy, that you really are sick with something other than depression or anxiety and are not just lazy or lying.

Our “new normal” is spent on the inside looking out, watching the world spinning along, more often the spectator than participator even though our hearts still long for a life we barely remember anymore.

Our “new normal” is changing what we can eat, where we can go, how long we can be out, how far we go, what activities we do and how often we can engage.

The only thing constant and reliable about our “new normal” is that “normal” is always evolving, sometimes hour by hour.

We are counseled and instructed that in the midst of our grappling for some sense of stability on top of the already burgeoning, arduous and ever-changing path that is our health, we are to “embrace our new normal” as though somehow that explains away the grief etched into our hearts at the loss we must endure a little bit each day as we wax and wane along with the unpredictable nature of our bodies. It fails to acknowledge the fear of being denied care and dignity, of dismissal after waiting for help for so very long.

While we must grasp onto the footholds of hope and anchor ourselves to the days of reprieve and love and joys in this life, they will never be the same. There is nothing normal about the “new normal” and its positive censure in denying our reality serves no one.

Yes, our “new normal” is now our reality, a phrased coined that millions of fellow chronic illness warriors can hold onto as attempted descriptor for something no one can quite explain, but how I wish that it showed the truth of it all.

I wish it showed the nights we cry ourselves to sleep, rocking against the pain that the pills never took away. I wish it showed the fear that roils inside as symptoms rear their ugly face. I wish it showed the isolation that comes when it feels like no one understands, when we feel discarded and forgotten by those whose lives continued on without us and of those who quietly walked away.

I wish it showed the deep ache so many precious parents feel at the diminished presence that their “new normal” demands, how they long to play with and care for their children the way they used to or grandparents who ache to hold their grandchildren again.

I wish it showed the terrifying 911 calls and emergency room visits, the needles, scars, insidious machines and hideous gowns.

I wish it showed the phone that seldom rings from a friend or loved one calling just to check in and say they are thinking of us.

I wish it showed the days spent in bed or on the couch as we fight against this being with a mind of its own, demanding we surrender our plans and our time while our bodies cope the only way they know how as inside, a war is being waged against our very beings, mistakenly hellbent on destroying us.

There is nothing normal about the “new normal” – the greatest misnomer ever to exist.

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Thinkstock photo via A75.