The best advice I ever got for dealing with a rare disease
Building an all-star healthcare team is critical for managing my sarcoidosis
Written by |
Over the weekend, I went to see the Harlem Globetrotters on their 100 Year Tour. I’d seen them as a child, but since I only started watching basketball a couple of years ago, I’ve gained a new appreciation for their incredible skill. The shots they take, the stunts, the acrobatics are truly awe-inspiring. They do things “regular” players don’t, nor would they even think to try.
When I got home, the NBA All-Star Games were on. Capping a weekend of individual highlights, the main event came in the form of a three-team, four-game tournament. This year’s USA Stars, USA Stripes, and World Team each showed that they are even better when working together.
Coincidentally, what struck me most was seeing radio host John Tesh sitting courtside. My husband reminded me that Tesh had written the theme music for the NBA on the network NBC. I excitedly yelled to my husband, “That man changed my life!”
The advice that changed it all
In 2008, I was working as a case manager for people with intellectual and developmental disabilities. With about 30 people in my caseload, my job was to visit them at their residential and day programs, and follow up with their staff, families, and clinicians to ensure that their needs were being met, their goals were being addressed, and their voices were being heard. Little did I know that was also preparing me to manage and advocate for my own chronic illnesses in the years to come.
I had been experiencing a variety of strange symptoms and didn’t understand why. I had headaches every day, and often felt weak and dizzy. I had pain throughout my body and severe, debilitating fatigue. I was taking more and more sick days and, without a “real” reason, my bosses grew less and less understanding.
The problem was that I couldn’t get a diagnosis. Doctors said I looked fine, dismissing me as “just depressed.” The most helpful suggestion I’d received came from two parents of individuals from my caseload, who happened to be nurses. As we’d become friendly during my visits, they’d asked how I was doing, and both suspected I might have fibromyalgia. I researched that condition, and when it seemed to fit my symptoms, I brought my findings to a new appointment. Still, I was disregarded.
On my way home from work, I often listened to the program “Intelligence For Your Life” on KJOY Long Island radio. In between songs, Tesh offered “real-life knowledge, expert advice, and conversation starters” about relationships, finances, health, and more. One fateful day, he said just what I needed to hear.
Tesh explained that, in a sense, doctors are our employees. We pay them to do a job: to care for our health and diagnose and treat our illnesses. Most importantly, he added, if they are not meeting our needs, we have every right to fire them and hire someone else who is a better fit.
I had grown up with the idea that doctors were the ultimate authorities — they told us what to do, and we did it. If it didn’t help, the problem was on us, not on them. So this was a mind-blowing revelation for me.
From that point on, I took control of managing my healthcare. It still took years to get an accurate diagnosis: I went from doctors who didn’t believe anything was wrong to doctors who agreed something was wrong, but didn’t know what it was. If a doctor was content without answers, I let them go and hired someone who refused to take “I don’t know” for an answer. Eventually, I was diagnosed with sarcoidosis and several other conditions, including fibromyalgia, that were causing systemic symptoms and affecting my joints, skin, lungs, and nervous system.
Building my own all-star team
When it comes to rare diseases, we need the Harlem Globetrotters of doctors who will do what most wouldn’t even consider. It’s the opposite of the old adage “When you hear hoofbeats, think horses, not zebras.” We need someone to look beyond common tests, diagnoses, and treatments to find what works for us. That’s why zebras have become the mascot for rare diseases.
With a multisystem disease like sarcoidosis, it’s not enough to find one great doctor. We need to build our own all-star team. That includes players (healthcare providers), support staff (therapists, pharmacies), and coaches (organizations, advocates). And we may have to make roster changes when a new symptom arises or for a variety of other reasons.
A 2025 Bionews study titled “Living Rare in Our Own Words” emphasized the need for a collaborative approach to managing rare diseases. But ultimately, we are the ones who call the shots — and it definitely helps to know we’ve got fans in the sarcoidosis community.
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.
Leave a comment
Fill in the required fields to post. Your email address will not be published.