Symptoms of sarcoidosis keep us out of ‘the room where it happens’
In multiple areas of life, we can find ourselves kept from the center of activity
This month, I watched the 78th annual Tony Awards, looking forward to performances from the year’s top shows. I’m always hoping to see my new favorites recognized and get ideas for what to attend next. This year’s awards show was extra special, featuring a reunion and medley from the original cast of “Hamilton” in honor of its 10th anniversary.
Though I’ve yet to see “Hamilton” live on Broadway, I watched the recording that started streaming on Disney+ during the COVID-19 shutdown (and I’ve watched it dozens of times since). But “Hamilton” has become such a cultural phenomenon that even those who’ve never seen the show are likely familiar with its most popular songs.
With that in mind, “I’m not throwing away my shot” to discuss the “Hamilton” song that resonates most with me. (Nope, it’s not that one.) “The Room Where It Happens” focuses on the information exchanged and deals made behind closed doors and the desire to be involved in those transactions. In the context of the play, of course, it refers to political activity. But for chronically ill people like me, there are plenty of other noteworthy rooms.
A range of rooms
People living with rare and disabling diseases such as sarcoidosis don’t often get to be in the room where it happens. Most of the time, it’s because we just aren’t feeling well enough to get there. It may be the fatigue that makes it too difficult to shower and dress. Perhaps it’s the musculoskeletal pain or gastrointestinal issues that keep us home instead. Or it could be our immune system, compromised by the disease and its treatments, that keeps us away from a crowd or a rainy day.
Whatever the reason, we often miss out on fun activities with friends and family. I’ve already missed five Yankees games this season. On a recent cruise, I had to skip two of the islands, one evening’s dinner, and four afternoons at the solarium pool. Over the years, I’ve missed countless holidays and special occasions as a result of my symptoms.
Other times, we may be feeling up for it, but the room where it happens isn’t accessible to us. Before we can get tickets to a show or a game, we have to check the venue’s accessibility. Many older theaters and historical sites don’t have elevators, escalators, or ramps. Even newer arenas compliant with the Americans with Disabilities Act have limited accessible and companion seating available.
Perhaps the most significant room where it happens for us — or, more accurately, to us — is within a medical insurance office. It’s hard enough to get an accurate diagnosis and find a treatment that works for us with minimal side effects.
But despite the conversations and choices made between doctor and patient, we’re at the mercy of the insurance company and its staff. On several occasions, my insurance has denied coverage of a treatment that my doctor prescribed, leaving me to suffer more than necessary.
Of course, the room where political activity happens has a tremendous impact on us as well. These days, we cannot escape news stories about Medicare, Medicaid, and vaccines. We’ve seen changes coming from the Centers for Disease Control and Prevention, National Institutes of Health, Department of Health and Human Services, and more. With so much still up in the air, being left out of the room is especially unsettling.
That’s why it’s so essential that we advocate for ourselves and our community, to insert our voices into the room where it happens when we can’t be there ourselves. On a political level, that means learning about candidates and issues on the ballot, voting for the choices that best serve our interests, and encouraging others to do the same.
To be sure, it doesn’t end there. We’ve got to communicate with our elected leaders and share our stories, so they understand who we are and what we need. We must hold them to account for their actions and vote to replace them if they’re not meeting our needs.
Closer to home, we can still speak up for ourselves and ask others for their support. That may mean asking physicians to appeal coverage denials or asking case managers to include accommodations in our care plans. On a social level, we can ask loved ones to make plans that include flexibility, accessibility, and downtime so that we can participate as well.
Aside from that, we can look for the rooms — and the happenings — that are designed specifically for us. Whether we’re attending virtually or in person, rare disease conferences, support groups, and awareness events offer us the opportunity to connect with others in our community who understand our rare challenges. And together, we can make it happen (whatever “it” may be) in any room we choose!
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.
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