Living with ichthyosis is more than skin deep, impacting daily routines, self-esteem, and emotional well-being while teaching resilience and compassion.
Ichthyosis is a rare genetic skin disease, and I have lived with it my whole life. On the surface, it may seem like just a skin disease — scales and dryness that one might assume only impact my physical appearance. Yet, like the vast majority of skin diseases, ichthyosis reaches far beyond the visible layers, affecting other areas of my body, such as my bones, my muscles, and my ability to sweat. However, it is my emotional and social well-being that has been affected in profound and often challenging ways.
The realities of managing a skin disease
The true reality of managing ichthyosis, a constant cycle of treatment and care, can be both exhausting and unyielding. Daily medications, frequent applications of creams, and the ever-present worry about flare-ups all weave themselves into the fabric of my everyday life. These routines are crucial for relief, yet the repetitive and never-ending nature serves as a constant reminder that I am different.
Ichthyosis also intimately affects my self-esteem. Society’s ideals of beauty often feel exclusionary, with perfect skin frequently showcased as the epitome of health and attractiveness. On top of that, the physical discomfort I struggle with, like skin tightness, itchiness, and chronic pain, has led to a mental resilience that I have had to cultivate over many years.
The visible nature of my condition has made it an inescapable part of my identity. From an early age, I have had to confront the curious gazes of strangers, the insensitive questions, and even the misconceptions from well-meaning but misinformed people. Living with a skin disease can cause an overwhelming sense of isolation that is difficult to articulate but keenly felt. It is often emotionally draining to deal with the reactions of a world that may not fully understand the complexities of living with a disability like mine, the reactions of a world that often stares a little too long or turns away a little too quickly, and to simply go about your day while being treated like a circus freak.
Despite these many challenges, living with ichthyosis has also given me a deep sense of empathy and compassion for others who struggle silently with visible and invisible ailments. It has connected me to a supportive community of individuals who, like me, understand the unspoken complexities of living with a chronic condition. Together, we find strength in sharing our experiences. Although it may seem like it at times, I am not alone.
Finding beauty in your journey
I continue to navigate the ups and downs of living with ichthyosis daily. However, I have learned to embrace my uniqueness and find beauty in my differences. It has been a long road of self-discovery and growth, one that has shaped me into who I am today. I am proud of my visible difference and the strength I have found within myself. By sharing my story and advocating for myself, I hope to encourage a more inclusive and compassionate society that values diversity in all its forms. Another reason I share my story is for my child, who has ichthyosis as well, but their journey with the disease is not mine to share. In the end, my humble wish is a hope that my story inspires others to embrace their uniqueness and find beauty in their own journey.
About the author
Francine Mondi, M.L.A., is an accomplished writer who has previously been published on MSN and The Mighty. She has a master’s degree in liberal arts from The Johns Hopkins University where her studies focused on exploring the impact social media has on society’s mental health.
