Scleroderma Can Be Overwhelming, but It Doesn’t Define Me
It was a particularly beautiful morning. The hot Florida sun was still low in the sky, and a light breeze kept us comfortable while we watched our youngest daughter play soccer. It was almost perfect.
As usual, I was rudely reminded that my broken body needs constant attention. My bladder muscles have weakened, and I urgently needed to get to the bathroom on the other side of the field.
I need restroom breaks wherever we go. That’s nothing new. But these days, it’s not as simple as getting up and going.
The cartilage in my hip joint has worn away thanks to constant inflammation in my body. The continuous bone-on-bone rubbing has led to spurs — rock-like formations the body creates to try to protect bones from wearing away. Constant, excruciating pain is my new mood.
To take some of the pressure off, I use forearm crutches to get around. This is the only way I can be mobile, at least until the doctors finalize a plan to fix me up.
I braced myself on the crutches and began to hobble my way to the ladies’ room. My husband, Ross, came along to hold my crutches since I’m a germaphobe. No way am I bringing them inside a public restroom! Have you seen those floors?
Illness is ugly and cruel
On our walk, I mentioned that my wrist pain was worsening from the pressure of using the crutches. He asked me what else was bothering me at the moment. I began rattling off the current sore points: wrists, toes, chest, stomach …
I laughed as I listed everything. That’s my coping strategy. Giggles somehow ease the severity of serious issues. Ross laughed along, saying, “Oh good! You’re all set!” Keeping difficult times light is his superpower, too.
His next two questions caught me by surprise. “What doesn’t hurt? What’s not affected by scleroderma?” I’m not sure if they were rhetorical, but they were good questions nonetheless.
It took me a few minutes to think of an answer. I started at the top of my head and mentally scanned down to my feet, carefully thinking about each body part, inside and out.
My answer was short: “My elbows and ears feel good and have no issues.”
We were only silent for a few seconds before the laughter took over. We chuckled for a bit. I couldn’t look at Ross, because I knew I would start to cry if the moment became serious. I kept my eyes on the freshly manicured grass and pressed on toward the bathroom.
We weren’t laughing because it was funny. On that day, neither of us could face the mental anguish of this disease. Scleroderma is too much for us to deal with every day. So, we laughed instead.
Scleroderma can’t steal the person inside
Sadness loomed over me for most of the day. I often thought about my answers to Ross’ questions. I don’t know how I got here — how my list of pains and organ damage far exceeds the number of body parts unaffected by this miserable condition.
It was a mental battle. I tried to grasp onto something positive so I could move on.
It wasn’t until later that night when I finally realized that I have two more things to add to my list — two incredibly important reasons I shouldn’t feel so defeated. I still have my strength, and I’m still Lisa!
I haven’t lost my identity as a mother, wife, daughter, aunt, sister, and friend. I’m the same person who can laugh through uncomfortable moments and use sarcasm like a pro. I can still feel loved and experience joy.
Scleroderma has not touched my soul, and it never will. Morals, values, and the feeling inside my heart cannot be stolen by this chronic illness, and neither can my strength.
Despite having many reasons to quit trying so hard, I haven’t stopped doing what I would be doing without my disease. I still show up. It may look different now, but I’m still participating in the life I built before scleroderma.
We are more than our disease
For those of us with chronic illness, it’s easy to forget that our journeys aren’t defined by our condition. Chronic pain, disabilities, and medical appointments can be overwhelming. We may feel like we’ve been swallowed up by a monster. But if we take a moment to be still and think of the reasons why we keep fighting, we’ll see ourselves again.
Living with constant emotional and physical struggles can make it difficult to remember that the struggles don’t define us. We are strong and full of qualities that cannot be quantified on a medical form.
We are more than scleroderma! Let’s remind each other of that.
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.