Crafting Hope: How Art Helps Me Navigate Rare Disease

Living with a rare disease can be exhausting and monotonous. The uncertainty of living with a chronic condition can cast a shadow on everyday life. This strain can extend to personal relationships, making it hard to sustain connections when symptoms fluctuate unpredictably. When social plans are derailed due to my rare disease symptoms acting up, it can feel so isolating.

Amid these challenges, I have discovered a way to transform my pain and frustration surrounding my rare disease into something meaningful and beautiful. Art has become a sanctuary for me. By channeling my struggles into creative expression, I can process complex emotions and reclaim control over my rare disease story.

As Edgar Allan Poe once wrote, "There is no exquisite beauty without some strangeness in proportion." These words resonate deeply with me. My art embraces the nuances of my journey, allowing me to turn my hardships into something other than pain. Maybe even something beautiful.

Finding my voice through different mediums

I engage in various creative outlets to express my feelings surrounding my rare disease and the struggles that come with it. Some of my favorite art mediums include acrylic painting, journaling, and jewelry-making. Each medium offers a distinctive way to explore and express my feelings.

Painting and journaling: Processing the internal world

Acrylic painting enables me to depict confusing and chaotic emotions that I struggle to express with my words. Journaling provides a reflective space where I can untangle my thoughts, find clarity of mind, and investigate patterns of thinking or living.

Jewelry-making: Crafting connections

Jewelry-making, in contrast, becomes a way to connect with others—a heartfelt gesture of care as I craft pieces tailored for loved ones. Every gift I create carries a fragment of my story, transformed into a tangible token of meaning. And I love incorporating colors and subjects that the people I love care about! It’s so much fun for both parties — to give and to receive.

Poetry: Giving words to the intangible

Poetry is another medium through which I share my feelings. Writing poems allows me to transform intangible parts of my heart and soul into words. What I love about poetry is that it is both personal and universal. Each poem becomes a window into the poet’s soul, inviting others to understand their experiences. By writing poetry, I feel that I can connect with those who read my words and resonate with them. Poetry intertwines vulnerability and strength, transforming pain and isolation into beauty and connection.

Art as a bridge to understanding

What I love most about art is that it is a bridge, enabling me to communicate my rare disease journey in ways that words alone cannot. Through my creations, I strive to convey not only the weight of my struggles but also the hope that keeps me going. My work invites others to see beyond the pain, discovering the poise and prowess that emerges from adversity.

When it comes to living with a rare disease, transforming pain into beauty is neither easy nor instantaneous. I try to remind myself that even amidst overwhelming challenges, there is always room for growth, connection, and self-expression. Living with a rare disease continues to shape my life, but through art, I have reclaimed a sense of agency. This bit of freedom of expression is invaluable to my physical, mental, and spiritual health.