Reflecting with gratitude on what sarcoidosis has brought to my life
I wish I didn’t have this disease, but it has given me reasons to be grateful
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At the start of a virtual meeting the other day, the facilitator began the discussion by asking all of us, “What are you grateful for?” Answers varied, but most included family, community, and health. I agree with those first two, but I have a harder time saying “thank you” to an ever-growing list of chronic illnesses that affect every aspect of my life.
The meeting happened to fall on Sept. 11 — a day filled with reflection and sadness everywhere, but nowhere more visibly than in New York City. Some years ago, I co-organized a tour of the 9/11 Memorial Museum for a group of sarcoidosis families. There is a higher incidence of sarcoidosis among first responders and those who lived or worked around Ground Zero, so it hit home even more for us.
But even that tragedy was filled with expressions of gratitude. Survivors were grateful to the first responders who saved them. New Yorkers were grateful for the support that came from around the world. And on the 25th anniversary of the attacks, family members are grateful that their loved ones are still remembered, memorialized, and honored.
Later that evening, I attended Rosh Hashanah services with my mom. The Jewish New Year is a period of reflection, both on our own lives and the world around us. But even as the rabbi spoke about the horrors we’ve seen in the past year, he focused on an unexpected theme: gratitude. He urged us to be grateful that we are still here, that we can join together with our loved ones, and that we can have hope for better days to come.
With that message coming from three different directions in one day, it felt like the universe was calling on me to write about it. Even in our most trying times — perhaps especially in those times — we take a moment to express gratitude.
Finding meaning in the struggle
Some might instinctively rebel against this idea. How can we be grateful for the awful things that happen to us, to our loved ones, and around the world? But what I’m talking about is not dismissive toxic positivity. For me, it’s a vital coping mechanism.
One of my favorite Weight Watchers coaches explains, “We practice gratitude not as a feel-good moment, but as a tool for identity change, resilience, and long-term success.” That idea extends far beyond weight loss, and resonates even more for me as a person living with sarcoidosis. This disease can alter the way we see ourselves, and it requires resilience to endure its endless symptoms and stressors.
Does that mean I am grateful for sarcoidosis? Absolutely not. I wish I didn’t have this disease (or the countless others that invade my body). I would love to go a day without pain, to feel energized instead of exhausted after a shower, or to plan a vacation (or even a day out with friends) without worrying about how long it will take me to recover afterward. But that doesn’t mean it hasn’t given me reasons to be grateful.
For starters, there’s the diagnosis itself. After years without answers, and years of being doubted, dismissed, and disregarded by people who should have believed me, getting diagnosed with sarcoidosis in 2015 was life-changing. It was validation — a loud “I told you so” to everyone who had suggested it was all in my head, and a reassuring “I knew it” to the intimidated and insecure part of me that occasionally wondered if they were right.
Another welcome development that has come from my illness is a shift in perspective and priorities. Before I got sick, I was always busy working, volunteering, planning — always needing to do more, to be more. But then life slowed me down.
It’s taken years to get here, but now I focus on quality over quantity. I understand that my time and energy are limited, so I must choose carefully how I will spend them. I am grateful for quiet moments alone with my husband, boisterous stadium events (with accessible seating), and cruises that offer both peace and excitement. And naps. I couldn’t get through any of that without naps.
I recently saw a series of posts stating that a disease is a terrible way to meet great people, and I couldn’t agree more. Many in the sarcoidosis community have become family to me, as we share something no one else can truly comprehend. I’m grateful for the opportunity to see them in person at an upcoming sarcoidosis patient summit.
And finally, dear readers, I am grateful for every one of you who has read, shared, or commented on anything I have ever written, and to Bionews, the parent company of this website, for giving me this opportunity. You help me find meaning through this struggle, and I am honored to share what I have learned with you. We are in this together.
Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.
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