‘It’s Hard to Be What You Can’t See’
For those with sarcoidosis, one of the most challenging aspects of the disease is finding folks who are just like us.
I’m not referring to race, gender, or any other characteristic that differentiates us as individuals. I’m talking about the things that make us the same. I’m talking about finding people who also struggle with the disease.
Of course, part of that is simply the rare nature of sarcoidosis. It’s hard to “see” others when there aren’t many of us out there. According to the Foundation for Sarcoidosis Research (FSR), between 150,000 and 200,000 people live with the disease in the U.S. Given the U.S. Census Bureau‘s July 2019 population estimate of about 328 million, roughly one in 2,000 Americans has sarcoidosis. Thankfully, organizations like FSR, as well as hospitals and clinics devoted to the disease, give us an opportunity to meet others like us.
Marian Wright Edelman, founder and president emerita of the Children’s Defense Fund, said, “It’s hard to be what you can’t see.” Many of my colleagues and mentors have shared this wisdom with me over the years.
Even if we do happen to meet other sarcoidosis patients, the darn disease affects each of us differently. I’m admittedly not a huge fan of calling sarcoidosis patients like myself “snowflakes,” but I understand the point of the term. Just as each snowflake is unique, each sarcoidosis patient is affected uniquely by the disease. Perhaps two people both have lung involvement, but while one might require an oxygen tank to survive, the other is able to continue without it. We’re similar, yet so very different.
Beyond our uniqueness as sarcoidosis patients, sometimes my own body feels different every year (or even every day). My sarcoidosis presented far differently when I was diagnosed in 2014 than it does today. No doubt, some of that is due to better medicine, improved healthcare, and more knowledge of how the disease affects my body. But sometimes, even after all these years, I still struggle to understand this condition. Some days, I don’t know how I truly feel until I take a breath and walk a few steps away from my bed.
It was quite some time before I was even able to talk with others about sarcoidosis. For a long time, I didn’t even like using the word “disease.” I still don’t really like it, but I’ve realized that using the word freely helps remove some of its stigma and power over me. In recent years, I’ve also learned the power of honestly telling others how I’m doing.
My friends’ encouragement pushed me to be more open about my condition on social media. These days, if you view my Instagram, Facebook, and LinkedIn accounts, you are bound to see a mention of sarcoidosis.
Heck, why shouldn’t I post about it? After all, while sarcoidosis doesn’t define me, it’s certainly a part of who I am, whether I like it or not (usually not). And posting about my sarcoidosis race lets me pay it forward to those who have helped and inspired me.
After I was diagnosed, I first saw others living with sarcoidosis on Instagram. Some were struggling like me, some were having a much tougher time than me, and some were doing things I didn’t even know were possible with this disease. But they were all living their best lives under the circumstances.
By searching hashtags such as #sarcoidosis or #sarcoidose, you will see some amazing folks. Personally, I post to celebrate another day of beating this disease. I often think, especially when I’m running, that every step is an act of defiance against sarcoidosis. It may win one day, but not today.
And after most social posts, I get to hear from someone else who has sarcoidosis. Maybe they were recently diagnosed and feel scared, like most of us are. Maybe they are a seasoned patient offering me words of encouragement. Some simply need to see another person doing the best they can with this dreaded disease.
Whatever the reason, each post introduces me to someone in this community of racers and fighters, and I get so much pleasure from meeting them. It proves I’m not alone in this — none of us are. We may have a rare disease, but we also have a whole community to look to for support.
After all, you can’t be what you can’t see.
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.