My Story My Life: Living with Sarcoidosis

By Meghan Bailey on Jan 9, 2017

Living with an invisible disease like sarcoidosis is frustrating, especially because your physical pain isn't visible from the outside.

When people break their foot or experience an injury that is outwardly visible, it's easy for people to give compassion and understanding, but for the millions of people who are living with an invisible disease, explaining what is wrong can be challenging and mentally exhausting.

This was certainly the case for Jessie Matheny, an Ohio native living in Las Vegas with sarcoidosis. Before being diagnosed, Jessie started to notice shortness of breath and chest pain. She was immediately admitted to the hospital for a full cardiac workup, and her doctor found something on her x-ray that concerned him enough to send Jessie for a CT scan within hours. The CT Scan revealed something in her lungs, but doctors still didn't know what it was. The preliminary diagnosis was lymphoma, so she began working with a specialist to perform a bronchoscopy. This ultimately led to a procedure where a portion of her lymph node under her chest plate was removed. Once the biopsy came back, she was diagnosed with stage two sarcoidosis, something she had lived with undiagnosed for more than six months. 

The social challenges that Jessie faces are common among those with an invisible disease. These conditions prove challenging to explain to caregivers, coworkers and friends. "There is a constant uphill battle that people with sarcoidosis face," Jessie mentioned during our interview. "This disease isn't one that will go into remission, so while I look okay on the outside, I feel 100 years old on the inside." Sarcoidosis is an inflammatory disease that can affect almost any organ in the body and can make everyday tasks feel impossible. It causes an overactive immunity,  which means that a person's immune system attacks the body instead of protecting it from infection and disease, resulting in damage to the body's tissues.  

Sarcoidosis isn't a common illness, which means it’s not immediately recognized when medical attention is needed. "Each time I visit the ER, I feel as if I'm reliving Groundhog Day. I constantly have to explain my medical condition from A to Z to receive care, because I look healthy on the outside." There is not currently a cure for sarcoidosis, and very little research is ongoing because the cases are so few and far between. "If I could tell anyone something about my disease it would be that the medications that we take have extreme side effects that internally affect us in extreme ways, such as fever, tiredness, tingling or burning in parts of the body and an overwhelming sense of weakness. We want to be seen as ordinary members of society, but also understood with compassion that we are fighting a rare disease."

For more information on sarcoidosis visit