Living With Sarcoidosis

Living With Sarcoidosis – Part 1.

March 11th, 2010
· by CK Dillon · Filed Under: African American Health · Baby Boomer · Health and Wellness · Men's Health · Sarcoidosis · Women's Health

Today’s article is the first in a series about a disease, Sarcoidosis, that hits more than close to home with me. It’s something I’ve lived with every day for the past 15 years.

Hope I do it justice.

Here’s My Story.

Early fall, nineteen-ninety-five, was to be an extreme and lonely period in my life. After being ill for several months during the summer, I was diagnosed with something called Sarcoidosis.

Initially told by a specialist that the disease affected mainly African Americans and Scandinavians, I quickly realized I had no one to talk with who could relate to what I was going through.

I didn’t know any other African Americans who had been diagnosed, and I didn’t know any Scandinavians, period.

Working it Out . . .

My close friends listened and lent a sympathetic ear when I needed it, but they couldn’t feel me, so to speak. I imagine that’s what it’s like with most serious diseases.

Here’s a big “Thank You!” to all of you who participate in various support groups.

When I was first diagnosed, there was very little information on the web, or anywhere else about Sarcoidosis. I’d spread the word whenever the opportunity presented itself, but most people just couldn’t relate. And frankly, my knowledge was limited.

Fast-forward to this decade and the disease is no longer obscure. I’ve come to realize many other African Americans were right there with me, waging the battle against an enemy unidentified.

Those who came before weren’t known as pioneers. They were referred to in a less endearing light. “He’s Lazy with a capital L,” was something I used to hear a lot about a certain older gentleman, “he’s always been lazy.” Lethargy is a common symptom of Sarcoidosis. Maybe “old dude” wasn’t just “lazy.”

One of my earliest symptoms was lethargy. Friends and co-workers had always known me to be energetic, but suddenly I’d hear whispers, “he’s always real tired lately.”

At that time, in nineteen-ninety-five, my symptoms were a “Charles only” problem. I didn’t want to be tired, or as some would feel, “lazy,” I just couldn’t help it.

See Part 2. . What’s Wrong With This Picture! I’m Not Lazy!”