Have you ever tried to explain sarcoidosis to someone? First, you have to phonetically walk them through the funny-sounding pronunciation. If you still have their attention after that, it’s usually gone by the time you hit the term “granuloma.” After being shellshocked by a sarcoidosis diagnosis, my most difficult moments were trying to explain to others a disease I barely understood myself. Even now, armed with much more knowledge, I find it difficult to provide a succinct description of sarcoidosis on the spot, one that people will not only grasp, but also remember later.
Consider what we are up against. We have a rare disease most people have never heard about, one that can be difficult to diagnose and treat, and that varies widely in its pathways. The average human attention span is just eight seconds long — less than that of a goldfish, according to a study by Microsoft. Try answering how you found out you had sarcoidosis, what it is, and how it’s treated, which are the most commonly asked questions, before a person’s mind has wandered. Having sarcoidosis means being tasked with doing it over and over again.
Face of sarcoidosis
Because our disease is rare, we might be the first and only person someone will ever encounter with sarcoidosis. These meetings are opportunities to help spread information and awareness about it. That can be a heavy burden at times.
Being diagnosed means going through rounds of conversations with family and friends. When I was newly diagnosed, the last thing I wanted to do was discuss it with others, especially strangers. I was still coming to terms with it myself. Days with sarcoidosis can be unpredictable, and I didn’t always feel up to serving as people’s information resource for the disease. I often wished there was a wallet-size card or brochure explaining sarcoidosis that I could have on hand for those instances. My wish was granted when I discovered the Foundation for Sarcoidosis Research’s sarcoidosis flyer.
Whether we choose to use the nonprofit organization’s flyer as an additional educational tool or by itself, I think it’s a great way to help others understand sarcoidosis and what we face. If conversations are too difficult, telling family and friends about a new diagnosis could be made easier by sending a group text or email with the flyer’s link. The flyer could also be printed out and taken along to appointments with physicians, many of whom — in my early days of diagnosis and even now — have no familiarity with the disease. And for those particularly bad days, you could keep a copy stashed in your purse or wallet to pass along to inquiring minds, so you know they will leave with a better understanding of sarcoidosis than they had when they arrived.
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 Services, and are intended to spark discussion about issues pertaining to sarcoidosis.