Yesterday, I opened a box of tissues and noticed the message on the packaging—a collaboration with Mind, a UK charity supporting mental health. It served as a reminder that our personal experience of living with a condition is at the heart of our well-being. For anyone who has lost their sense of smell due to a virus or TBI, or who lives with chronic rhinosinusitis (CRS), tissues become an essential part of life.
This small reminder brought me back to something I learned early on in my journey with smell loss. While anosmia and related smell disorders are typically viewed as conditions for ENT specialists, for those of us who live with these issues, there’s a deeper dimension—it’s also a mental health matter. Yes, we have lost the sense of smell, but along with it, we may have lost a sense of self, a connection to place and season, the intimacy of a loved one’s scent, and the pleasure of food. For many, this loss translates into anhedonia—the inability to experience pleasure.
Within the CKOS community, where these themes continue to be explored, we talk about the personal impact of living without smell. It’s a uniquely isolating experience, often difficult to explain to family and friends who may not fully grasp the depth of this “hidden” loss.
While doctors are essential to our care and offer valuable treatments, there are aspects of living with smell dysfunction that extend beyond clinical interventions. That’s where the CKOS Network comes in, offering a safe space to share your journey and connect with others who truly understand.
Join us at CKOS, where we provide a supportive community, access to exclusive events, practical advice, and the latest research on recovery and management for those with smell disorders.
