For more than twenty years, my hands were the center of my career.
As a chef and cake artist, they helped me design intricate cakes, build edible works of art, and even compete on national television cooking shows. My hands were my livelihood, my creativity, and my passion.
Then my fingers began to swell.
At first it was just tingling and puffiness in my fingers and toes. I assumed it was temporary—something minor that would pass. But the symptoms didn’t go away. They slowly became part of my everyday life.
My journey to diagnosis was long and frustrating.
At first, my doctor suspected carpal tunnel syndrome. Later, rheumatoid arthritis was considered. Each possibility brought new appointments, more tests, and more uncertainty. None of the explanations seemed to fit what I was experiencing. I knew something else was going on in my body.
After months of searching for answers, I was finally referred to a rheumatologist. I underwent a series of tests, including bloodwork, lung function tests, and a skin evaluation. In March 2017, I received a diagnosis: systemic sclerosis, also known as scleroderma.
By that time, the disease had already begun to affect my daily life. My fingers were stiff and swollen, and I was experiencing the painful circulation issues caused by Raynaud’s phenomenon. It was a relief to finally understand what was happening to my body, but hearing that there was no cure was terrifying.
Before scleroderma, I had spent more than two decades working as a chef and cake artist. It was my dream job. I loved creating intricate cakes and pushing the boundaries of edible art.
But scleroderma slowly took away the ability to use my hands the way I once could. The stiffness and swelling made detailed work increasingly difficult. Eventually, I had to step away from the career I loved.
That loss was devastating. I went from designing elaborate cakes to struggling just to hold a kitchen utensil.
Still, my motivation has always been simple: quitting is not an option.
Even after losing my culinary career, I refused to let this disease define who I am. Over time, I began exploring new creative outlets that allowed me to keep that part of myself alive. Painting became one of those outlets. It gives me a way to express creativity while adapting to the limitations scleroderma has placed on my body.
It has also given me a new purpose: raising awareness.
One of the hardest parts about living with scleroderma is that many people don’t understand how much it can affect someone’s life. The disease can impact organs, mobility, circulation, and mental health. Yet much of the struggle remains invisible. People may not see the pain, fatigue, or daily challenges that come with it.
That is why awareness matters so much to me.
Scleroderma is often misdiagnosed or undiagnosed for years. My own experience showed me how long and confusing the road to diagnosis can be. The more people understand the symptoms and the impact of this disease, the more likely it is that patients will be recognized earlier and get the help they need.
Awareness also builds compassion and support. When people understand what patients are facing, it helps drive the research and funding needed to improve treatments.
There is still no cure for scleroderma, but research continues to give me hope. Every discovery moves us closer to better treatments and, hopefully one day, a cure.
Until then, I will keep sharing my story, raising awareness, and finding new ways to create and move forward—because quitting has never been an option.
Editor’s Note:
Monika shared her story with Patients Rising to help raise awareness about scleroderma. This story has been edited for clarity while preserving her voice and experience.