My Diagnosis Anniversary: What It's Like When 'That Day' Comes Around


That day. That day was the day. Defining moments happen in everyone’s lives; some people are lucky and those moments are happy and shining with color. But then there are some of us who are given moments of shadow and gray. That day…

I understand that, for some, the term “that day” might not mean much, as they may not have experienced a day which disrupted their life in such a critical way as to shake them to the core in an irreversible manner. Some have sailed life on a smooth sea with moments barely rocking them; while for others that day, year after year, comes swamped in memories and emotions as they can see how much that moment has become etched into their soul.

I won’t tell you the date I am writing this, because today is my “the day” – the day I changed. And it is so sensitive that it is a date I hide away from all but the most essential people in my life. Today, years ago, is the day that an event so momentous happened it was permanently carved into my memories and my thoughts. I both remember that day, and don’t.

I don’t remember the exact words of the doctor, not all of them as only one word was necessary to pierce the protective veil I had shrouded around my soul and shatter me. That word which meant for the rest of my life I would be followed by pain. The diagnosis was more like a life sentence to years of chronic pain and a tiredness that was bone-deep and unshakeable.

 

As that word rang through the air, my world went from glorious color and clarity to a stark black and white contrast with a sharpness that hurt the mind. It hurt to look, it hurt to be, as that word resounded silently in my head again, again, again. My body might have been sat in the doctor’s office, but to my consciousness the world I was in blurred, became almost silent around me. My armor had not helped that day, but despite this the veil in front of my eyes thickened. The rest of the conversation I was not present for as it became so muffled I could hear my heartbeat more than the people talking. I was aware of my mother, her touch as she stood and came over to hug me and hold me close. She became the only tether to keep me there in any respect. I suspect without her, I would have been lost in the blurry dark.

After the appointment, I vaguely recall walking out of the hospital. But it was blurred, everything stark, white and painful. The edges of my vision were dark though and the only thing I was consciously aware of was my mother’s hand clutching mine in silent support. It still makes my heart ache to remember how gentle she tried to be with that grasp to avoid hurting her daughter.

For others in that hospital, it must have appeared strange, a 17-year-old being guided by the hand by her mother. Although no one could see it, I know maybe some in that hospital had had a similar appointment, and they could have comprehended that my soul was no longer in one piece. My mind now resided in this dark, hopeless and painful landscape. The world outside that place was muffled other than the pain in my body. I was shaking at the time, having to adjust to my new reality that the pain was my new constant companion as it pulsed and shifted in triumph.

After driving home, I remember allowing myself to cry for an hour, curled on the sofa with my mum, who held me throughout. After the time, I shoved my tears away and then walked into school for the only class of the day. My friends didn’t talk to my vacant form that day; they instead watched me out of the corner of their eyes and tracked the few silent tears that fell. I was vacant for the rest of the day until finally snuggling in the corner of my bed, attempting to fight off the dark thoughts before sleep claimed me.

Today, looking down at myself in the mirror, my world is still a place where there is little color and everything retains a reduced, gray tone. Examining my body in the mirror, clad in my favorite jumper dress, when I try to see my soul, I see a wraith. My body consists of dark thick smoke and shadow which overlay this shattered thing – this strange object I can’t describe inside my heart, my chest. This thing which is in pieces which shift and move if I ever lose my mental grasp, this once beautiful and colorful being I have mentally wrapped my arms around to keep together. I am broken inside and overrun by shadow, but no one can see this internal battle through my physical body which looks so normal and draws no suspicion. No one would guess the twisted shadows inside, the red-hot flashes of fire (the pain), the constant ache of joints or the gentle white shroud of drugs which soothe and calm the fires back to slumber, though as the fires build, the cloud does less and less to dampen it. The curse of an invisible disability.

silhouette of a woman standing on a balcony overlooking a lake at sunset

Today, on this day, my world is gray, the edges dark and my outlook hopeless. Still, I cling with all mental desperation to keep hold of my shattered soul, unable to repair it while shrouded in dark. I cling to the glimpses of color in the world, all the more beautiful because of its rarity. In a chronic disease like this, there are few positives to gain, few gleams the soul can shed to pierce the dark. But nothing can stop the glow of my heart as I see the beauty in the world, the beauty taken for granted and unseen by the majority who can spend their days in a colorful world, no shadowy figures in sight.

And so, today, I wrap my arms around myself and attempt to cling to this world and see the color. Maybe one day I will beat my shadow and this day will be a day of triumph, though the scars will always be there, but until then, today is that day – today is the day I broke, completely, irrevocably and irreversibly. But tomorrow I will return to just being myself, and will continue my battle. I fight every day to keep the shadows at bay and I win, every day, when I get out of my bed and ignore thoughts to remain in hopeless despair. I will continue to fight it all. Sometimes I lose, but mostly I win. But on “that day,” I let myself lose for a minute and remember what I can and see the positives.

To those who are supporting someone diagnosed, I hope this can help you understand how that moment can feel, how it changes you, and how your friend/partner/spouse might remember that day even now. Please understand how hard that day could be, or understand why on that day we can cling to the normal to pretend it is not “that day.” Everyone thinks and deals in a different way, but maybe reading this and thinking about how you may have reacted will help you reconsider how you act on their “that day.”

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