Sarcoidosis: A life of no
Having sarcoidosis means I must say no to many things. That is why when Cinco de Mayo rolled around last week, I was sitting in while my friends did their part to keep Americans in the lead for tequila consumption. They tried to coax me out to a block party, or even just an afternoon lunch, but as is usually the case, I declined.
Living with my sarcoidosis used to be a partnership. I did what I wanted, and when I did too much, sarcoidosis would knock me down for a few days to remind me it was there. But over the years, it has become a dictatorship. Sarcoidosis reigns, and I try to squeeze life into the small windows of reprieve it provides from the worst of its symptoms.
Streaming through life
I didn’t cede control all at once. In the early stages, I tried to push through the worst and still go out and have fun. But over the years, the “no’s” slowly piled up.
At first, I turned down social outings because I didn’t feel well. Then I started to turn them down because I feared going out would drain energy I needed to deal with other responsibilities on the horizon. When Hulu emailed me year-end viewing statistics in December that revealed Friday was my favorite viewing day, it hit home that my social life had vanished.
Managing sarcoidosis is an ongoing juggling act for me, and I still haven’t figured out how to balance it with a social life. At the beginning of this year, I decided to make it more of a priority. I made a New Year’s resolution to go out at least once a month. Like most resolutions, I started off strong, attending both a book signing for author Chris Bohjalian and a TEDx event, even after my friend bailed with the flu. But like most, my resolve was gone by mid-February, and I’m now on track to join the 80 percent of people who fail to keep their resolutions.
Going out once a month was already a lofty goal with the unpredictability of my health. Since making the resolution, I’ve added to my juggling act physical therapy, writing a column, and returning to work for the first time in eight years. And I still need to reintroduce gym workouts, which have been hampered by health problems for the past year. With so much on my plate, my resolution is getting further and further out of reach.
So, I’ve decided to change course and join the ranks of those who choose a word for the year instead. My word is reclaim. Sarcoidosis forced me out of work, forced me to sell my home, and forced me to trade nights out for nights in. I’ve given all that I’m willing to give to sarcoidosis. It’s time to reclaim what I’ve lost. Because although I have sarcoidosis, I’m tired of it having me.
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.