Rising from the Ashes: My Journey with Sarcoidosis and the Creation of a Symbol

Living with sarcoidosis is like finding my way through a relentless, never-ending storm—each day presents a new challenge with an obscured view, and sometimes an occasional calm. This blog is my story, but it is also a lighthouse, shining its light over the sea of invisible sufferers, letting them know that they are not alone. My tale is one of personal struggle, resilience, and ultimately, hope. I created the Sarcoidosis Warrior T-Shirt, which features a phoenix rising into the light of the moon, to encourage and enlighten others about this elusive disease and inspire strength through shared experiences.

The Genesis of an Idea

The idea for the T-shirt was not spontaneous but rather evolved gradually, woven through my own life's narrative and marked by a continuous battle with sarcoidosis. There was no single moment of inspiration, but rather a series of day-to-day encounters filled with pain, fatigue, brain fog, and hopelessness, leading up to the gradual rebirth of who I am. I refused to let this condition define me but allowed it to influence me to become someone better and more resilient. The phoenix, a symbol I remembered from childhood while wondering what a "Phoenix Down" was during a game of Final Fantasy, emerged as a symbol of personal significance—embodying the resilience and rebirth that I experience every day. It represents not only survival but a renewal of myself amidst ongoing trials.

Journey Through the Fire: My Battle with Sarcoidosis

My journey with sarcoidosis began in 2015 with sudden and confusing symptoms: my ankles and feet swelled up almost twice their normal size, and I experienced a fatigue so severe that all I wanted to do was sleep. The early days were filled by a steep learning curve, trying to navigate my way through the storm of endless tests that yielded no answers, and doctors who were as confused as I was. At 32, being fairly young and previously healthy, I wondered why I had such a sudden decline. Through a barrage of blood tests and an eventual X-ray of my chest, I was greeted with the news that my lungs "lit up like a Christmas tree"—imagery that you do not want to hear when referring to one of your un-electrified body parts. This startling description did not confirm any diagnosis but instead led to new doctors and more tests. After visiting a pulmonologist, we planned to get a sample through a biopsy of the "Christmas tree lights" in my chest. This involved a bronchoscopy, which is a fairly straightforward procedure where they insert a tube down your throat while you're under conscious sedation. They assure you that you won't remember it, but unfortunately, I metabolize drugs fairly quickly. Long story short, I ended up choking on the scope, and we couldn't get the biopsy that day. Flash forward three months later, a new bronchoscopy was scheduled (this time with a stronger sedation), and we finally got the sample needed to confirm sarcoidosis. For those living with sarcoidosis, the only way to confirm a diagnosis is to get a biopsy of one of the granulomas affecting your body. The initial phase of diagnosis is typically fraught with uncertainty and emotional rollercoasters—it's rarely a clear-cut "YOU HAVE SARCOIDOSIS, TAKE TWO OF THESE" situation but rather a long, continuous battle.

Once you have your diagnosis, at least you have a name for what you're dealing with, which alleviates some of the worry. A lot of people are told, "Well, at least it's not cancer!"—a statement that, while well-intended, doesn't do much good for those who actually suffer from chronic sarcoidosis. The initial years after getting diagnosed were the hardest. My mental health took a drastic decline as I grappled with the reality of living with an unpredictable and often debilitating disease. Many days filled with pain and exhaustion left little room in my head for hope or joy.

Over time, however, my perspective started to shift. As I educated myself about sarcoidosis and its unpredictable nature, how it could affect different organs causing a wide range of symptoms, I connected with a community of other sarcoidosis warriors. This connection was a big part of my progress in grappling with and looking forward from sarcoidosis, not letting it define who I am as a person. The community gave me a source of strength. No two people with sarcoidosis are alike; it's named the "Snowflake disease" because of its unpredictable nature and variety of symptoms. But having others to connect with, exchange ideas about what helps with flare-ups, and just for emotional support was a huge source of strength. Gradually, I was able to embrace the good days and foster some of my old personality back into my life. I've always tried to foster humor in occasions, even during the toughest of times. Connecting with others and seeing the resilience displayed by them inspired me where small victories started to become significant. This transformation wasn't about controlling the symptoms or the endless doctor appointments with no answers but cultivating a profound appreciation for life's better moments.

Today, I balance the ongoing challenges of sarcoidosis with efforts to live fully and inspire others. I’ve adopted the phoenix as a personal emblem in my story—continually rising from the setbacks, determined to spread joy and laughter, and using my experience to empower others facing similar battles.

If this story resonates with you, or if you know someone it might inspire, please share it. Visit our website to learn more about the Sarcoidosis Warrior T-Shirt and join us in bringing light to the shadows of sarcoidosis. Also, if you are one that needs to connect with someone through a shared experience, feel free to go to the "Contact Us" section and send me an email. Together, we can make a difference—one story, one shirt, one conversation at a time.