‘Hand in My Pocket’: My Sarcoidosis Soundtrack Is Mostly Alanis Morissette
“I’m broke, but I’m happy
I’m poor, but I’m kind
I’m short, but I’m healthy, yeah!”
— Alanis Morissette
Well, maybe not that last one.
Inspired by recent columns by my colleagues relating “Stand By Me” to Friedreich’s ataxia and “West Side Story” to cystic fibrosis, I’ve been thinking about how much Morissette’s music has played in the soundtrack to my life.
Surely, anyone close to my demographic has screamed lyrics from “You Oughta Know” after a breakup, or noted the irony that the lyrics to “Ironic” aren’t really ironic. (“They’re just a list of bummers,” I read somewhere years ago.)
It’s been more personal for me, though. “Perfect” both fed on and fueled my insecurities, and “Head Over Feet” still fills my heart with joy as I think about my husband and all that he has been for me over the years.
But nothing reflects life with sarcoidosis better than her classic “Hand in My Pocket.” It’s full of seeming contradictions, but that really is life for the sarcoidosis warrior. How we feel, what we think, and even how we feel about what we think can give us emotional whiplash, with all the twists and turns.
“I feel drunk, but I’m sober.”
With sarcoidosis, there can be a big discrepancy between what we feel and what we are (or what we’ve done). I feel 80, but I’m only 47. I sweat, but it’s cold outside. I fall, but I’ve just stood up. (Yeah!) I often feel the soreness, fatigue, and breathlessness of a marathon runner when I’ve only walked from the car to my front door.
“I’m sad, but I’m laughing.
I’m brave, but I’m chickensh**.
I’m sick, but I’m pretty, baby!”
Sarcoidosis is frequently referred to as an invisible illness: As sick as we may be, most of our symptoms are not visible to the world — or even to our doctors. My cutaneous sarcoidosis is mostly managed by medication, but even at its worst, I can cover it up with clothing. I use mobility aids to get around outside, and some sarcoidosis warriors require oxygen, but barring that, we can appear perfectly healthy.
More than that, the image we portray to those close to us and to the world at large often contradicts how we feel inside. Whether it’s a coping mechanism, a form of self-care, or a defense against a judgmental public, we often try to look our best when we go out. We may simply say “I’m fine” when asked how we’re doing, because we don’t want to sound like we’re complaining, or we believe people don’t really want to hear the truth.
“And what it all boils down to
Is that no one’s really got it figured out just yet.”
There is so much that they haven’t figured out about sarcoidosis, and each bit can make it harder on us. They don’t know what causes it or why it affects people so differently. They don’t know why some patients require double-lung transplants while others never need treatment at all.
They haven’t figured out how to diagnose it easily, either. Sarcoidosis is a diagnosis of exclusion, meaning that doctors have to run through a list of diagnoses with overlapping symptoms and perform tests to see which can be excluded. After countless lab tests, scans, and biopsies, we may finally be told that we have sarcoidosis. This process can take weeks, months, or even years — it was eight years for me — and all that time, we’re waiting, wondering, and worrying.
They also haven’t figured out how to adequately treat this disease. Currently, only two medications are approved by the U.S. Food and Drug Administration (FDA) for sarcoidosis (prednisone and Acthar Gel), and while they can be tremendously helpful, they also come with significant risks and side effects.
Other medications are frequently prescribed off-label, meaning the FDA has approved them to treat other conditions, but they also have been shown to benefit patients with sarcoidosis. Since there is still no cure for this disease, these medications are used to manage symptoms and improve quality of life. But they, too, come at a price.
“I’m sane, but I’m overwhelmed.
I’m lost, but I’m hopeful, baby!”
From trying to make sense of our symptoms to finding the best treatments, and to learning how to navigate life with sarcoidosis, it’s natural to feel overwhelmed. We can easily get lost down the rabbit hole when there is so much conflicting and incomplete information out there. We’ve got to seek out trustworthy sources to help guide us.
Most importantly, we’ve got to hold on to hope. We hope for answers, we hope for relief, we hope for connection, and we hope for a cure. I am always hopeful that there are better days ahead for all of us.
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.