My salvation and glory depend on God, my strong rock. My refuge is in God. Trust in him at all times, you people; pour out your hearts before him. God is our refuge. (Psalm 62:7-8)

HIDING FROM THE UGLIES OF CHRONIC ILLNESS

I was six months pregnant with our first child and was referred to a perinatologist because we couldn’t get adequate heart images with our original prenatal ultrasound. They took me to a dark room with a large ultrasound machine. As the technician began the exam, she asked why I was referred. As I explained the situation, she replied, “Things look good here, but I’ll grab the perinatologist just to make sure.” I felt relieved.

Without saying a word, the perinatologist came in and took additional pictures. My husband and I casually talked and joked. Then I saw the look on the perinatologist’s face, and the room fell silent. My heart sank.

They told us that the right side of our baby’s heart was too small, so they immediately scheduled a prenatal echocardiogram. I held it together and silently prayed. I begged for it not to be serious. My husband, three doctors, and I walked to the echo room and joined the cardiologist and a nurse. That was when I learned to hide behind a mask, to hide the fear creeping in. The rest of that day was a blur of medical words and raw emotion. I was overcome with grief.

The next morning, I put on the mask and went to work. During those final months of my pregnancy, I mastered the art of pretending that I was okay. People asked about my pregnancy, and I shared happy details. When asked how I was, I focused on something positive and then changed the subject. On the outside, I appeared resilient, strong, and unbroken. Inside, I was scared, beaten down, and broken.

 

FACING THE UGLIES OF CHRONIC ILLNESS

My husband dealt with his emotions differently, which left me feeling very alone. I didn’t know anyone going through something similar. My best friend at work was seven months pregnant with a healthy baby. I didn’t feel I could confide in her. My family was supportive but afraid to talk about anything besides my daughter being born healthy. I didn’t feel I had a safe place to discuss the “uglies.”

These “uglies are what I felt on the inside, what I was pretending not to be, and what I hid behind the masks I wore. The “uglies” are the difficult emotions, thoughts, and insecurities accompanying chronic illness. They are the pain, suffering, grief, fear, and loss of hope that no one feels comfortable discussing.

The uglies of chronic illness are whatever I wanted to forget, even for a moment. They are the elephant in the room, forming my worst days.

 

IT’S OKAY NOT TO BE OKAY

It’s been years, and I am realizing that I’m still trying to acknowledge my uglies, think about them, talk about them, and allow myself time to truly feel them instead of hiding them behind a mask. I’m learning that it’s “OK not to be OK.” When I acknowledge these feelings, my perspective shifts, and I feel God’s presence. As He helps me accept my uglies, I can release them and again feel the hope, strength, and joy each new day brings.

I believe we all need a safe place to share the uglies of chronic illness, a place where we’re not ashamed, afraid, or judged, where people understand that not all days are good days, and where we know that we are not alone. I’m here, you’re here, we’re here, and most importantly, God is here.

Yellow Bubbles
Heidi Peterson

Heidi Peterson

Heidi is a loving wife and mother to one friendly dog and three amazing, fun-loving children [one daughter born with a congenital heart defect (PA-IVS) and one son with food allergies and a sensory processing disorder] who always remind her to live in the moment. Since childhood, she has witnessed the progression of a genetic, neuromuscular disease called Charcot-Marie-Tooth on her siblings and father. Heidi loves dark chocolate, all things nature, and family.

Promises for Parents

Parenting is hard work and parenting children with chronic illness, mental illness, chronic pain, or disability adds unique and sometimes difficult challenges. But what we do every day matters, for it is eternally significant.

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