My Condition Is More Than Just 'Not Cancer'

It all began with a swollen and sore ankle. I was doing some military training and I assumed I had injured myself while exercising. It would get better as I rested.

But it got worse and spread to my other ankle. And then my knees. And then other joints in my body. I was soon walking with a cane.

That was not the worst of it. My appetite completely vanished. The very thought of food made me sick. I lost 35 pounds in a month. I had watched my father stop eating as he approached his death, and I was terrified. The doctors thought I was depressed but I knew there was something else going on.

The symptoms kept piling on. I was aways freezing cold, even though it was the hottest days of the summer. I had such bad night sweats that the sheets were soaking wet every morning. I passed out a number of times. Blood tests suggested I was losing blood somewhere, but no one knew where or why.

A routine X-ray, taken even before the symptoms appeared, revealed some dark images in my lungs. My doctor warned me that I was very sick.

But with what?

After numerous tests, I finally was admitted into the hospital. More tests were done and it was finally decided that the most likely cause was lymphoma. Cancer. I had cancer.

Or did I?

I went to the cancer clinic and we started talking about radiation and chemo. My specialist decided to do a biopsy of my lymph nodes. I asked the specialist how likely was it that it was lymphoma. His response was, “If it walks like and duck and talks like a duck…”

But it wasn’t a duck.

The biopsy not only ruled out cancer but found granulomas, a sure sign of a rare disease known as sarcoidosis. Sarcoidosis is an inflammatory disease that can attack any organ but often begins with the lungs.

My friends and family were overjoyed that it was not cancer. So was I. But in all the rejoicing of it not being cancer, many people forgot that I still had a chronic illness.

While many people with sarcoidosis go into remission soon after diagnosis, that was not my experience. Although I did get my appetite back and regained my weight, I have had frequent bouts of joint and muscle pain. The worst is the fatigue. I can go months of feeling “normal” and then get to the point of needing multiple naps per day. My military career came to an end.

I do appreciate the sentiment when people say, “At least it’s not cancer.” But cancer is not the only health struggle there is. It is unlikely (but not impossible) that sarcoidosis will kill me. Yet, sarcoidosis stays with me, limiting my energy and physical ability.

Sarcoidosis. It’s more than just “not cancer.”

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Sarcoidosis

man on winding road to the big tree

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. [...]
man looking at the sunset

What a Stranger’s Death Taught Me About Living With Sarcoidosis

This wasn’t the article I intended to write. No, I was crafting a breezy piece on the eternal wisdom found in the lyrics of Bruce Springsteen’s “Thunder Road” when a 45-year-old man from Cincinnati, a man I have never met or even knew existed, died. All reports indicate he was an honorable man. A good [...]
man writing

How My Sarcoidosis Inspires Me to Be Creative Every Day

After I was diagnosed with sarcoidosis, I spent weeks circling the drain of self-pity. I was convinced my problems were worse then anyone else’s. I blamed myself. I cursed God. When my wife tried to talk to me, I was tight-lipped and curt. I was angry and afraid and spiteful. Why was this happening to me? I believed I was [...]
Close-up of a man in a red striped sweater reading a book

20 Things I've Learned Since My Sarcoidosis Diagnosis

A few days after a muscle biopsy procedure my doctor called and delivered the name of my mysterious internal antagonist: Sar-coy-something. As I scratched down its letters on the back of a Chinese takeout menu, he explained the intimacies of my disease, offered some reassurance and outlined a plan of attack. When the call ended, [...]