Life Altered: My Journey to a Sarcoidosis Diagnosis

I was an average woman in my early 30s, married with two young stepsons, working a full-time job in healthcare sales and marketing. My husband and I had recently purchased our first home. We enjoyed spending time with family and friends and led a healthy lifestyle.

Then one day, I woke up and I wasn’t average any longer. Just like that, my life was forever divided in two: before and after sarcoidosis.

Sarcoidosis, aka sarcoid, started with severe pain like electrical shocks that ran up and down my spinal column and affected my wrists, knees, and ankles. It was everywhere; I couldn’t escape it.

Next came the fatigue, an unrelenting tiredness that no amount of sleep could alleviate. At its worst, I had no relief despite sleeping 18 to 20 hours per day.

The cough started shortly afterward — it was a deep, painful cough that lingered for months.

Erythema nodosum (EN), a secondary condition to sarcoidosis, caused my calves to swell to three times their normal size and left large red welts on my legs. EN made it difficult to walk, so I shuffled to wherever I needed to go for several months.

I spent an entire summer visiting a retinal specialist several times a week due to uveitic glaucoma, a condition that caused blurriness and pressure changes in my eyes.

Like the experiences of many others with rare conditions, I visited many doctor’s offices and had numerous tests before receiving a diagnosis. Finally, following a bronchoscopy, a pulmonologist diagnosed me with sarcoid. But no one could tell me how or why I had this disease.

I didn’t choose sarcoid, and never in a million years could I have imagined that this could happen to me. I still find it hard to believe that I have been living with this condition for over 15 years.

While some days are more challenging than others, I have been pleasantly surprised by the unexpected positive experiences that have resulted from having this condition. The kindness of a neighbor who sat with me during an episode of vertigo. A deeper appreciation for the simple things in life, such as a meaningful conversation with a spouse, a delicious meal, or a walk with a beloved pet. The ability to adapt to my illness and excel in my efforts despite my circumstances.

It’s true that sarcoid has seeped into nearly every aspect of my life. Yet, I’ve come to see that an altered life isn’t necessarily a bad life, it’s merely different. I hope that you’ll join me for a walk along this sarcoid path while I examine the latest findings about the condition, highlight events that support research, discuss relationship dynamics, and more.

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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 pulmonary fibrosis.