As a Marvel fan, this week’s long-awaited premiere of “Avengers: Endgame” has me thinking about the sarcoidosis community’s hidden superpowers. They aren’t flashy. We can’t fly. We can’t shoot webs from our wrists and swing through neighborhoods. And we can’t transform our bodies into a hulking green beast — though I’ve been known to exhibit the rage of one, especially during courses of prednisone. Regardless, superpowers exist in all who battle severe health issues.
Whether an illness or disability is a short-term or long-term battle, its management is a period of our lives in which we must shoulder more than the average person. Like Thor, I lift an unwieldy hammer and carry it around all day. My hammer isn’t called Mjörlnir; my hammer is called sarcoidosis. It comes with unrelenting pain, fatigue, and other symptoms as faithful as Mjörlnir in its never-failing return to Thor’s outstretched hand.
At times our battles can leave us feeling as defeated as the Avengers holed up at Hawkeye’s homestead licking their wounds in the “Avengers: Age of Ultron.” But like the Avengers, we regroup and press on. I pressed on past the dozens of doctors who blamed my fatigue and cognitive issues on “depression” and “getting old” because I did not have diagnostic evidence of neurosarcoidosis.
Frustrated, I searched online for answers and found a study that concluded “everyday cognitive failure is a substantial problem in patients with sarcoidosis” and emailed the corresponding author in the Netherlands. She confirmed that cognitive problems existed in those solely with pulmonary involvement and recommended a physician at the Cleveland Clinic. That was 2011. (A recent study reported on by Sarcoidosis News now links impaired lung function with higher risks of dementia and cognitive decline later in life.)
We can’t our snap fingers and blink half of the universe out of existence like Thanos in “Avengers: Infinity War,” but, in my case, sarcoidosis hides in plain sight. Pain, fatigue, dizziness, cognitive issues, joint and muscle problems — all are invisible to the naked eye. They place us among the estimated 10 percent of people living in the United States with “invisible disabilities.”
Of the 85.3 million people (27.2 percent) living with a disability in the United States in 2014, 55.2 million (17.6 percent) had a severe disability, according to the U.S. Census Bureau’s “Americans With Disabilities” report for 2014. Additionally, 18.4 million (7.7 percent) of all adults used a cane, crutches, or walker. And 5.5 million (2.3 percent) used a wheelchair. Far too many still rely on visual evidence, such as assistive devices, as the sole means of determining whether someone is disabled, which resulted in a recent settlement for a disabled U.S. Marine Corps veteran arrested after parking in an accessible spot. Such misperceptions can make living day to day with invisible health issues a hardship in and of itself.
Battling sarcoidosis has been a marathon for me, one that I’m still in after nearly 17 years. Living with a rare disease is not easy. We incur more doctor examinations, medical tests, procedures, and medications in our battles than most people will in an entire lifetime. The invisible disease can be unpredictable. It can be lonely. It can be soul-crushing at times. It takes heart to keep fighting. We do it without wielding a hammer fit for a god, a near-indestructible shield, or a sleek, black, vibranium suit.
I’m off to battle another day.
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.