From Passion to Purpose: My Journey as a Scleroderma Advocate Amidst Baking and Art

Living with scleroderma changed everything. One day, I was simply a person who loved baking and creating art. The next, I faced a diagnosis that reshaped my life and priorities. This journey has been challenging, but it also opened a new path—one where my passions and purpose merged. Here, I share how scleroderma affected my baking journey and artistic expression, and how I found strength in advocacy.

Discovering Scleroderma and Its Impact

Scleroderma is a rare autoimmune disease that causes hardening and tightening of the skin and connective tissues. When I first noticed symptoms—stiff fingers, fatigue, and skin changes—I didn’t realize what was happening. The diagnosis was overwhelming. Suddenly, simple tasks like kneading dough or holding a paintbrush became difficult.

The physical changes affected my baking routine. My hands, once nimble and precise, now struggled with the fine motor skills needed for decorating cakes or shaping pastries. Fatigue often left me unable to spend hours in the kitchen. At times, I felt frustrated and lost, wondering if I would ever enjoy baking the same way again.

Adapting My Baking Journey

Instead of giving up, I adapted. I learned to listen to my body and adjust my aking techniques. Here are some ways I managed to keep my passion alive:

• Simplifying recipes: I focused on recipes that required less manual effort but still delivered delicious results. No more intricate sugar flowers, but plenty of rustic breads and simple cookies.

• Using tools and aids: Kitchen gadgets like stand mixers, silicone mats, and ergonomic utensils helped reduce strain on my hands.

• Pacing myself: I broke baking projects into smaller steps, spreading them over several days to avoid exhaustion.

• Accepting help: Friends and family became part of the process, whether chopping ingredients or decorating.

  
  

This approach allowed me to keep baking as a source of joy and creativity, even if it looked different from before.

Art as a New Outlet for Expression

While baking remained important, my love for art grew stronger. Painting and drawing became ways to express feelings that were hard to put into words. Art offered a therapeutic escape and a way to connect with others.

I explored different mediums—watercolors, pastels, and collage—finding what worked best for my changing abilities. Creating art also became a platform to raise awareness about scleroderma. I started sharing pieces inspired by my experience, hoping to educate and inspire others facing chronic illness.

Becoming a Scleroderma Advocate

Living with scleroderma gave me a new purpose: advocacy. I wanted to support others navigating this disease and help increase understanding in the wider community. Here’s how I stepped into this role:

• Sharing my story: I began speaking at local support groups and online forums, offering a personal perspective on living with scleroderma.

• Collaborating with organizations: Partnering with scleroderma foundations helped me contribute to awareness campaigns and fundraising events.

• Creating educational content: Through blog posts and social media, I shared tips on managing symptoms, adapting hobbies, and finding emotional support.

• Encouraging creativity: I promoted baking and art as therapeutic activities that can improve quality of life for people with chronic illness.

  
  

Advocacy became a way to turn my challenges into something meaningful, connecting me with a community of strength and hope.

Lessons Learned Along the Way

This journey taught me several important lessons that might help others facing similar challenges:

• Flexibility is key: Adjusting expectations and routines allows you to keep doing what you love, even if it looks different.

• Small steps matter: Breaking tasks into manageable pieces prevents burnout and builds confidence.

• Community support is invaluable: Sharing experiences and asking for help creates bonds that ease isolation.

• Creativity heals: Engaging in creative activities nurtures the mind and spirit, providing comfort and purpose.

• Advocacy empowers: Using your voice to raise awareness can transform personal struggle into collective strength.

  
  

Moving Forward with Purpose

Scleroderma changed my life, but it did not end my passions. Instead, it reshaped them, blending baking, art, and advocacy into a new path. I continue to explore ways to adapt my hobbies and support others living with chronic illness.

If you or someone you know is facing scleroderma or another chronic condition, remember that your passions can evolve and still bring joy. Finding purpose through creativity and community can make all the difference.