How Making My Invisible Illnesses Visible Is Helping Me Learn to Love My Body


Pictures. Memories that can never fade. I sit and stare at pictures often and the images below are a few of my favorite. Milestones, happiness and a love for living. You may look at these photos and see the same, your average 20-something-year-old girl. Perhaps you’ll caption each photo in your mind, searching for the story behind each one. From where you look, nothing in either photo would alert you to the fact that within, I have organs which have been stitched, re-stitched and cannot function without extra support.

woman riding on a carousel

woman blowing out birthday cake candles

On the May 23, 1995, 10 weeks before my due date, I surprised my parents (on their wedding anniversary) with my presence in this world, weighing less than a bag of sugar. Premature babies can often spend their first few months in the hospital and during mine I was diagnosed with an incurable heart disease called complicated Ebstein’s anomaly.

A “hidden truth” which would see me spend a significant amount of time in and out of the hospital. At the age of 9 I had open heart surgery, and to date have had eight operations on my heart, including a pacemaker implant age 16, the device I claim as my second “hidden truth.”

It’s been a whirlwind of experiences, but often the hardest truth to get over is that the illness will never be seen. It can be felt and sometimes it will be managed, it has the power to cause great pain to a person and those around them, but it will never show itself to the world. I’ve been alive for a wonderful 22 years now, but I don’t think my mind will ever comprehend the “mess” that lay beneath the surface of my skin.

No matter the treatment and even once the pain is dealt with, I wake each morning with the disease still entangled through my body, the only thing remaining for me to see are the scars that are etched on various parts of my body, along with the mental memories of each experience.

I grew up with little confidence for my internal and external body. I was too skinny as a child and my classmates had no understanding of illness, which is understandable but mentally taxes oneself. Open heart surgery age 9 caused me to hit puberty very suddenly, faster than most actually, and I went through my only growth spurt and soon after that came an early period and everything that comes with that.

Secondary school saw me through four surgeries and unbearable periods that I was apparently always “exaggerating” over. I knew from a young age that my periods weren’t “normal” and years later was diagnosed with polycystic ovaries and endometriosis.

Insecurity creeped in and I found it harder to deal with the daily symptoms of my disease. I felt embarrassed about who I was and in turn spoke words of hate to my internal world and the physical body that was trying to evolve. I would stand speaking harmful words to my being, not understanding that negative sentences stained. I took my body for granted and thought blaming illness was the solution.

I wished for illness to go away or for parts of me to be replaced, convincing myself that in getting rid of everything I knew, everything I am, I would be fixed and in turn feel better. I sought help on more than one occasion and turned to holistic and meditative healing. I worked on fixing my mindset. During one of these sessions my “healer” advised me to write to the parts of my body I had issues with on one condition: I wouldn’t be negative, I would be grateful for everything it has given me.

We must heal ourselves before we move on to heal others and my biggest healing had to come from finding a way to actually see my darkness head on and I did that the only way I know how – through vision and art.

I needed to see inside my body and with acceptance, hope and love I let my guard down to allow myself and anyone else to connect with my disease on a real level which would give me closure, connection and ownership. I took what was once never seen and brought it to the surface. Inside out.

For the first time in 21 years I came before my illness with boldness. A series of painful images flashed through my mind and the tears just started streaming. Before I knew it, it was myself and two strangers crying in my room, over something neither one of us has control over – disease.

“My body was painted by artist Carolyn Roper, and while black may seem like a harsh color to choose, I wanted my damaged parts to show up because I knew this was my one chance to face it all head on. We chose to surround the organs in pink and blue healing flower symbols, as a move towards acceptance, understanding and the courage to carry on.” All photos by Andrea Whelan Photography.

woman having her body painted

woman having her body painted

woman standing in front of a mirror with her body painted

woman standing in front of a mirror with her body painted

I’m learning that through all my imperfections and brokenness, whether that be deep down inside me or through the changes in my life, my organs are enough. My body is enough. I am enough. It’s about finding a love for everything you are and all you are given. Understanding how each piece is carefully put together, to create who you are. Even if that takes over 22 years.

Life is an ever changing, mysterious, beautiful thing – messy, but beautiful. Through each experience we learn, grow and teach ourselves to see our world in a different light. We become grounded and connected.

 

Each day we have a choice to wake up and make our mark in the world and for me this body painting experience and these past few months have taught me that I will be on a healing journey my entire life – we all are, continuously healing. There is something magical about that. Magical in the sense that no matter what comes our way we are safe in knowing there will forever be space, time and the opportunity to heal from the change.

We encounter many souls on a daily basis, we spend time with them or just brush past them, but before stopping to have an opinion on who they are, stop and remember who you are, remind yourself that not everything is seen nor heard. Each person you brush past has faced or is facing a battle you know nothing about and maybe, like many, their pain is painted somewhere deep within who they are. Here’s to breaking the silence around invisible illness and knowing there is hidden silence in all our lives. Embrace all that you are, start from deep within and cherish every single part of you. Show love and gratitude towards the being that sees you through every single day.

We are all wonderful, beautiful wrecks. That’s what connects us – that we are all broken. All beautifully imperfect” – Emilio Estevez

Take that broken heart, illness, divorce, loss, whatever it may be and bring it to the surface. It may never be fixed but there is certainly a path for better. We are capable of throwing harmful labels in all directions, perhaps without even realizing. When we look carefully, we all have one thing in common, we all have our share of mess and most of all we are all only Human.

Remember to never a judge a book by its cover. For all those fighting illness that never comes to the surface, I see you, I feel you and I know the struggles and the wonders. Connecting with this was probably the hardest thing I’ve done but worth something for sure.

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