Living With Scleroderma Means Living With Grief, Too
My little girls sway back and forth in their ruffled dresses. My face is fixed with a glowing smile as I watch the home video of these sweet babies. They are both saying the word “marshmallow” at my request. Their mouths fumble the multisyllabic word, producing the cutest versions. I hear myself giggle in the background of this priceless memory caught on tape.
Suddenly, scleroderma strikes again. The joy of reminiscing on the sweetness of my toddlers is replaced by the sorrow that once again wraps around my heart.
Grief is part of living with chronic illness
I can’t help but notice how my laugh is loud and whole. There’s no raspiness to the joyous sound coming from my pre-scleroderma body. I sound so healthy and strong. I miss that laugh — the one that didn’t send me into a coughing fit powerful enough to bring up unwanted stomach contents.
I then hear myself talk in the video. As my tone adjusts naturally, it sounds so musical. It flows with ease. I’m jealous of the effortless voice coming from my lips.
I love that I have this melodic noise recorded. It’s a happy memory, and I want my children to hear the voice I was born with before scleroderma stole it. My true voice.
But at the same time, I hate it. It’s another reminder of what this disease has destroyed. My voice box is now scarred, which forces me to strain to make any sound. It sounds as though I’m always sick or have laryngitis. For some pitches, the cords don’t fully close, making it impossible for vibrations to occur. To be heard, I have to speak in a higher pitch than my natural one. This is extremely tiresome, and by the end of the day, I barely have the strength to hold a casual conversation.
Damage from disease is difficult to accept
It’s hard to adjust to the damage this illness causes my body. It happens so quickly. People have tried to console me by saying everyone changes with age. While that’s true, aging is a slow process. Waking up one day with a crackling voice and finding out you’ll never again speak fluidly is not the same as developing wrinkles over decades. Looking in the mirror and seeing a nose that has narrowed and lips that have disappeared is not part of the natural aging process. I would love to see an older version of myself. Instead, I don’t recognize who I’ve become on the outside.
I mourn for the things I’ve lost. And that grief slips into the most unexpected moments.
I experience it when I stop to catch my breath halfway up one flight of stairs. It consumes me when I forget that I can’t close my fingers around the change the cashier hands me, and it embarrassingly scatters on the ground.
I’m learning to live with my disabilities, but they still haven’t become “normal.” I’ve lost the ability to live subconsciously, to move through a day without having to compensate. Will I ever get through a day without comparing who I am now with the person I was before getting sick?
The destruction is relentless
Unfortunately, accepting physical changes isn’t the only challenge. Not having enough time to mentally process those transformations is sometimes worse. Before I can learn to accept my current disability, a new one rears its ugly head. It’s a constant struggle. It’s similar to your home being damaged by a hurricane, but before you can rebuild, an earthquake hits. Chronic illness is a revolving door of destruction. No matter how strong and prepared I think I am, it’s difficult to stand on trembling ground.
Working on mental health is important
Because scleroderma affects us emotionally as much as physically, it’s important for to have ample opportunities to grieve, no matter when those emotions sneak up. We are all allowed to feel anger, sadness, denial, and acceptance. The stages of grief apply to every type of loss. Feelings are normal!
Processing and acknowledging these emotions can lead to better mental health — a goal we should all strive for. I believe this is the only way we can find the joy that awaits us on the other side of each scleroderma storm we survive.
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.