In 2014, I was diagnosed with sarcoidosis during an unrelated ER visit for an auto accident. I had a chest x-ray to rule out a fracture from the seat belt, and unbeknownst to me, I had hilar and mediastinal lymphadenopathy. My journey with sarcoidosis began that night, and I had no idea where it would take me.

 Because of my training as a clinical laboratory scientist, I understood the basics about sarcoidosis; its hallmark clinical findings are non-caseating granulomas. However, being able to recognize the cells in a tissue specimen has no bearing on what it’s like to face the daily challenges and struggles of having a rare disease. I learned very early into my diagnosis that most physicians have only a vague understanding of the ins and outs of sarcoid and that self-advocacy is the best self-care technique I can use for managing my healthcare needs. 

What websites can you trust?

Part of self-advocacy involves educating myself. I’m a strong believer that you don’t have to have a medical degree to understand and learn about your health. Since the inception of the internet, the number of medical websites has increased exponentially. There is so much misinformation out there, how do you know what is accurate and what is nonsense? The key is knowing where to look and being able to distinguish accurate medical information from that which is unsubstantiated or false. A good rule of thumb is to stick with sites that have an international reputation or are associated with a university such as the Cleveland Clinic or Mayo Clinic. WebMD and Medscape are also good sites to explore. Government sites like the Centers for Disease Control or National Institutes of Health are great to learn about the basics of sarcoidosis.

Where can you find more information?

If you want to explore more in-depth into the science and trends in current research, peer-reviewed journal articles have up-to-date information about advances being made in determining the cause of sarcoidosis as well as new diagnostic and treatment options. A peer-reviewed article or publication is the best source for medical information because they are reviewed by several experts before being published to ensure that the article presents accurate information. An example of a peer-reviewed publication is the New England Journal of Medicine. Articles found in magazines and newspapers are not usually written by a medical professional and often contain false claims. The problem with peer-reviewed journals and articles is that not all of them have open access (accessible to the public) and require a paid subscription. However, every article on the site, PubMed Central, is open access and available to be read for free.

My Life Today

Until I was diagnosed with sarcoidosis, I didn’t truly understand the value of self-advocacy. Dealing with a disease that most physicians are not familiar with means being brushed off or dismissed for symptoms they cannot explain. Fatigue became my number one problem two years ago, and since then, I’ve been told repeatedly that I’m depressed and that I need to exercise and all will be well. It’s extremely frustrating to be labeled by the people who are supposed to help. For me, self-advocacy has also involved educating some of my physicians, especially my PCP, about the difference between depression-related fatigue and that which accompanies sarcoidosis. Helping them have a better understanding of what it means to deal with the day-to-day challenges gives them greater insight to help me and other patients in the future. 

I began my journey with sarcoidosis five years ago. During an ER visit for an unrelated issue, I had a chest x-ray that revealed hilar and mediastinal lymphadenopathy. A month later after a lung biopsy, I learned that the granulomas were due to sarcoidosis and not lymphoma or tuberculosis. Even though I knew the basics about the disease due to my training as a clinical lab scientist, I had no idea how profoundly it would affect and change my quality of life. Both self-advocacy and self-care through acceptance have been key to handling the daily ups and downs of sarcoidosis.

I currently live in southern New Jersey with my two cats, Grace and Luke. They are a constant source of companionship on the days I can’t leave my apartment. Reading has always been an activity that I enjoy. Since I’m a microbiology nerd, I love reading anything related to it, but I also read literary fiction and mysteries. However, it’s through my writing that I’m able to use my medical experience to reach, connect with, and advocate for others dealing with the same problems we all face with this diagnosis. 

Dena A.

Sarcoidosis Patient