“Ten years ago, I heard a word that would quietly change the course of my life: sarcoidosis.
At the time, I had no idea how much that single word would teach me—about patience, uncertainty, suffering, resilience, and the deep importance of living mindfully in the present moment.
Before sarcoidosis entered my body and my life, the word anniversary had a very different meaning. It was associated with happiness—birthdays, graduations, weddings, and celebrations of life’s joyful milestones.
Now the word anniversary also marks the years I have lived with a diagnosis of sarcoidosis. It has been ten years since I was diagnosed, although like many of you, I probably lived with this disease long before it had a name.
During these past ten years, I have often felt as though I were riding a continual roller coaster—full of ups and downs, and sometimes sudden crashes.
Today I still feel that I am on that ride, but I have learned to meet it with greater awareness and acceptance. And sometimes, when symptoms quiet and the body allows, I can even appreciate moments of peace along the way.
There are still days filled with aches, fatigue, sleeplessness, discomfort, and pain—and the anxiety and sadness that can accompany chronic illness. Yet this journey has also been a profound teacher. I have learned who I can count on, and who I can truly share this experience with.
Some friends and family have stepped off the ride and are no longer traveling this path with me. Others ride beside me from time to time. And a very few remain there steadily through all the turns and uncertainties. It has been both humbling and eye-opening.
Through this experience, I have come to understand more deeply the Buddhist teaching of impermanence—that everything that arises also passes.
Mindfulness has been my anchor through these years. As a teacher of mindfulness, I return each day to the simple practices of awareness, breathing, and compassion. These practices help me meet each moment as it is, rather than how I wish it would be.
Support groups have also been an important part of this journey—places where people living with sarcoidosis share their stories and listen with empathy and compassion. I encourage anyone living with this disease to consider joining a support group through the organization, “Foundation for Sarcoidosis Research”. It can often be the missing link in finding understanding and connection.
I am grateful for the people who continue to ride this journey beside me, offering understanding, compassion, and presence. If you are living with sarcoidosis and feeling alone, know that you are not. There is a community that understands.
Today the word anniversary holds a different meaning for me. It is not simply a measure of time, but a reminder of resilience, awareness, and gratitude.
As the Zen teacher “Thich Nhat Hanh” teaches:
“Breathing in, I calm my body. Breathing out, I smile. Dwelling in the present moment, I know this is a wonderful moment.”
So today I pause and honor this journey. Not the illness, but the strength that grew beside it. Not the suffering, but the compassion it opened in my heart.
And with each breath, I remind myself:
This moment is here. This breath is enough.
And like the breath, this journey continues—moment by moment.
And today, I am still here.”
Author: Susan D’Agostino
Susan is a certified mindfulness meditation instructor through the McLean Meditation Institute. Susan is a sarcoidosis warrior and has had a life-long interest in the mind-body connection, specifically as to how the mind affects the body in prevention of disease and in its recovery from illness. She is a retired registered nurse, and has worked in the health care setting in various roles for over 40 years. Susan utilizes meditation and mindfulness practices in her own daily life. As your meditation and mindfulness coach, she will teach you techniques that will help you in your personal journey to health. Susan joined FSR as a Patient Advocate in 2020, and a Patient Navigator in 2021. In 2021, she hosted the FSR Virtual Wellness Mindfulness and Meditation Series. You can view the entire series in our video library. Susan is also a facilitator for the Virtual National Support Group for FSR.