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 my “uglys,” 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 “ugly” of chronic illness is just as important as every victory.
Heidi 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.