The “Uglys” of Chronic Illness

My hope will always be in the promises of God.It was May 5, 2009. I was 6 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. I was brought to a dark room with a large ultrasound machine. The technician stepped in and started. She asked why I was referred and I explained the situation. She replied, “Things look good here, but I’ll grab the perinatologist just to make sure.” I was relieved.

Without saying a word, the perinatologist came in and started to take some 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.

We were told the right side of our baby’s heart was small. They called to schedule an immediate prenatal echocardiogram. I held it together. I 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, nurse and fellow already there. 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 “pretending” I was OK. People would ask about my pregnancy and I would share happy details. When asked how I was, I would focus on something positive then change the subject. On the outside, I appeared resilient, strong and unbroken. Inside, I was broken, scared and beaten down.

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 other than my daughter being born healthy. I didn’t feel I had a safe place to discuss the “uglys.”

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

The “uglys are whatever I wanted to forget, even for a moment. The “uglys” are the elephant in the room, and they were my worst days.

It’s been seven years since May 5, 2009, and I realize I’m still trying to acknowledge myuglys,” to think them, talk about them, and allow myself time to truly feel them, instead of hiding them behind a mask. I’m learning that its, “OK, not to be OK.”  When I do, my perspective shifts. I begin to feel God’s presence. As He helps me accept my “uglys,” I can release them, and feel again the hope, strength and joy of each new day He brings.

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

Please feel free to share any of the “uglys you are experiencing in your own chronic illness journey, and remember, every “uglyof chronic illness is just as important as every victory.

Heidi PetersonHeidi Peterson is a loving wife and mother to one friendly dog and three amazing, fun-loving children – a 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 and all things nature and family.

Chronic Joy Ministry View All →

Radical hope. Compassionate change. Equipping those affected by chronic physical and mental illness through community and education rooted in Jesus Christ.

2 Comments Leave a comment

  1. Thanks for the blog. I have enjoyed and been encouraged by many posts on here. Great job ladies, keep it up! The uglys seem countless… Losing one of my favorite hobbies because I physically can’t do it anymore. The time and money wasted on being sick. The depression that I can’t pull myself out of. No energy to enjoy my kids. I don’t have peace about any of this yet. But, like you said, God is here, and he can use even what Saran intends for evil for His good. Holding on to that, and the hope of the resurrection and that every tear will be wiped away by Jesus.

    • Elizabeth, thank you! I’m so glad you took the time to comment. You are not alone. These losses we experience due to chronic illness cause us to cycle again and again through the grief process. We don’t talk about it very often, but I think it’s an important conversation. It’s something I experience and something all four of my teens/early 20s who are also sick experience. The thing that has helped me the most has been to consciously look for beauty in small moments — the way the sunlight glints off of a table top, listening to my son laugh, the smell of a fresh tangerine. This life with illness can seem too big, too overwhelming, claustrophobic to me when I look too far ahead. But when I pause and seek beauty even in a hospital room, it’s always there tucked into an unexpected corner. My breathing slows, my heart calms, I thank God, and His peace gives me the courage to continue on. Tonight, I am praying for you, Elizabeth. Praying for peace, hope, strength and beauty. Blessings! Cindee Snider Re

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