Why Living With Sarcoidosis Is an Unpredictable Journey

I have sarcoidosis. Actually a lot of people have sarcoidosis and have no idea they have it. They may find out they have the condition when they take a standard chest X-ray for something else and the radiologist notes it in his report. And a lot of the time, it’s a perfectly benign autoimmune condition causing no trouble whatsoever. It’s just a lot of little benign fleshy things growing on your lungs. (“sarcoidosis” comes from the Greek “sarko” which means “flesh” while “oid” means “like.”)

Sarcoidosis, on the other hand, can kill. As in the case of Bernie Mac, the late comedian. The disease weakened his immune system and he died of pneumonia. And he was in remission at the time.

But you know, sarcoidosis doesn’t have to be benign or conversely, kill you, to make itself known. There’s something between being completely clueless that you have it and being dead of organ failure or complications. Sometimes there’s simply the slow damage it does to your lungs, making it hard to breathe, and well, lots of other stuff.

For instance, the sweats. Sarcoidosis has well and truly broken my internal thermostat. I break out in full body sweats for no apparent reason and when it happens, I can’t cool down (Latest discovery? A pint of Ben & Jerry’s does wonders!). Did I say “sweats?” We’re talking sweat that drips down your body and drenches your clothes. I cringe when a girlfriend tries to hug me.

And then there’s the business of going in and out of remissions. I had sarcoidosis from 2008-2011 and then boom — I went into a spontaneous remission. (That means the sarcoidosis went away by itself without treatment.) I was lucky.

It took some time for me to realize it was back, months actually, because I’d thought it was gone for good — I’d put sarcoidosis out of my mind. But then came this feeling I couldn’t quite put my finger on. I was fatigued every evening at 5 p.m. and running a low-grade fever, and I remembered that. My body remembered it. And finally, my voice remembered it.

The thing I like to do outside of my writing work, you see, is sing. I sing in a local choir, and I perform in musicals with local theater troupes. It’s a huge part of my life. But then my voice turned croaky, gravelly and rough. I wasn’t making it to the end of those whole notes.

I told my husband I wasn’t feeling right. I mentioned that I felt, well, like I did when I had sarcoidosis. He said, “Go see the doctor!”

So I went.

Because he had an open appointment, I saw the new, young doctor in our local clinic, the one who doesn’t know what a kvetch I am, always imagining I have this disease and that. Almost apologetically, I mentioned what I was feeling reminded me of how I felt with sarcoidosis back in the day.

I didn’t expect the look of alarm on his face.

I wanted to tell him, “Don’t make a big deal out of this. I’m a hypochondriac. It’s all in my head.”

But inside, this time, I knew it was real.

The doctor sent me for this test and that. He sent me to the eye doctor for my burning eyes and to the gastro for my tummy symptoms, because that’s what you do with sarcoidosis. You see doctors and make sure that every little symptom isn’t sarcoidosis invading yet another organ. I set up an appointment to see my lung doctor from the last time around. He would be my main doctor.

It had been so long, the lung doctor didn’t remember me. He looked at my history, the CT disks and called them “Alta zachen,” Yiddish for “old rags.” But when I told him about my symptoms, he said, “We’re going to have to treat you this time.”

Bummer.

I thought I’d closed that chapter. I thought I’d escaped.

But I hadn’t.

How I wish it weren’t so. How I wish I didn’t now have to track down every little symptom to make sure the sarcoidosis hasn’t invaded say, my eyes, gut, skin, heart, and so on and so forth. Yeah. It usually gets you in the lungs and that’s where it’s got me right now, the sarcoid. But it is a multi-system disease. It can go anywhere. And while it’s rare to die from sarcoidosis, it can kill. It can get you anywhere in your body, when you least suspect it.

Living with sarcoidosis is confusing and frightening. It’s predictable, yet not predictable. It’s a journey where you arrive to find you haven’t arrived. It goes for good and comes back again. It can be so benign you don’t know you have it, but it can kill.

It’s funny. With fibromyalgia, it’s all about getting people, even doctors, to take me seriously. Because people don’t die from it. They just struggle.

But with sarcoidosis, you just don’t know what to think. You don’t know whether to tell yourself to stop being such a kvetch and pooh-pooh your friends’ concerns, or be frightened at every little twinge. You don’t know whether this time, you should pay attention.

It’s unsettling. Because sarcoidosis is benign, until it’s not benign. In which case you can die.

I tell concerned friends, “Look, it’s not cancer, thank God,” and then worry they’ll think what I’m going through is nothing much at all.

I don’t want to minimize the risks and risk their support. I need and want that support to stay the course of wherever this illness takes me.

I need and want the support you get with a “real disease” instead of this condition no one’s ever heard of. Unless of course that person was an aficionado of House, MD, where sarcoidosis is always the first disease thrown out when the team is trying to diagnose a mystery disease.

Sarcoidosis, you see, is a mystery disease.

And trust me on this: no one really wants a mystery disease.

Least of all, me.