Living with sarcoidosis and its internal conflicts

On any given day, at any given moment, we can see signs of conflict all around us. Wars, protests, he said/she said disputes. Personally, I vacillate between watching the news every waking moment (the “Breaking News” chyron has been permanently burned into the bottom of my television screen) and avoiding it completely to watch “Wicked” on repeat until I fall asleep.

Whatever the issue, it always seems to come down to a matter of “us” and “them.” Country vs. country, haves vs. have-nots, red states vs. blue states. It’s that last one that I want to focus on today. Don’t worry, though — I won’t get political here.

Red and blue are often used to represent opposites: hot and cold, aggression and serenity, and yes, even different political parties. But when the colors join together — when we combine red and blue — we get purple, and that seems quite fitting to me.

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Purple is the color associated with sarcoidosis. Every April, we honor Sarcoidosis Awareness Month with purple ribbons, purple clothes, and even purple hair, all to bring attention to this disease that affects as many as 200,000 people in the United States and 1.2 million worldwide. That may sound like a lot, objectively, but when we consider the global population (over 8 billion people), it’s only a percentage of a percentage. That’s why sarcoidosis is considered a rare disease.

Like most people I know, I’d never heard of sarcoidosis until my diagnosis, which was in 2015. Before then, I’d spent eight years trying to understand what was causing my severe fatigue, shortness of breath, joint pain, and other symptoms. I was the living embodiment of red and blue; my body was in conflict with itself, but I couldn’t understand why.

To this day, no one fully understands this disease. We know that it stems from the immune system, where clusters of inflammatory cells (called granulomas) can affect various organs and the way they function. But what causes the immune system to malfunction in the first place, or why it affects each patient differently, remains unknown.

The struggle and the negotiations

The general consensus is that sarcoidosis is caused by a combination of genetic and environmental factors. It can run in families, but it’s not passed down directly like blond hair or hazel eyes (and no one else in my family has it). There seems to be a connection to toxic exposure, which may explain why there’s a higher incidence of the disease among people who lived or worked near Ground Zero after the 9/11 terrorist attack.

In the yearslong search for answers, sarcoidosis patients often struggle with an internal battle between our symptoms and our diagnostic tests. We tell our doctors that our pain and fatigue can be debilitating, yet they tell us that our blood work is “normal.” For far too long and with too many doctors, I insisted that something was wrong, but was dismissed with the notion that I was “just depressed.”

At times, the battle even plays out in reverse. In a clear sign of inflammation or infection, my white blood cells were frequently elevated enough to worry my doctors. They referred me to hematologists and infectious disease specialists for further examination, but by the time I saw those new specialists, my levels returned to “normal.” At that point, I was dismissed again, told that it was just an anomaly. That cycle repeated several times before I was accurately diagnosed.

As with any conflict, the sarcoidosis battle requires negotiations to reach any sort of peace. In patient terms, that’s a delicate balance of lifestyle changes, medical treatments, and other supportive therapies. It’s a long process of discovery, with complications and setbacks along the way.

While people typically think of diet and exercise as the lifestyle changes necessary to live better with a chronic illness, sarcoidosis affects — and necessitates changes to — so much more. I had to give up a full-time career that I loved and adjust the way I travel, volunteer, and even socialize. I have to plan my days, weeks, and months with more downtime than activity, and I have to find shortcuts for shopping, meal prep, and more.

There’s no cure for sarcoidosis, but traditional, complementary, and alternative treatments can help with managing symptoms. Still, it takes a great deal of trial and error to find what works for each of us, and we may struggle with insurance challenges and side effects along the way. Psychotherapy can be especially helpful for acceptance, stress, and coping strategies.

As we don our purple ribbons this Sarcoidosis Awareness Month, we can feel the significance of this choice. Bringing together all shades of red and blue, this color represents the beautiful connections that we make within the sarcoidosis community. Sarcoidosis affects people of all ages, genders, and nationalities, from red states and blue alike. And together, we have purple power!

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.