‘What’s in a name?’ When it comes to a sarcoidosis diagnosis, quite a lot.

Having a word for my illness made a difference to me, and to others as well

🦋 Kerry Wong avatar

by 🦋 Kerry Wong |

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“What’s in a name? That which we call a rose/ By any other word would smell as sweet.” — Juliet in William Shakespeare’s “Romeo and Juliet”

We’ve all heard those words before. Even those who slept through English lit class are familiar with one of the most famous lines from one of the most famous plays ever written. And we all know what it means. The name is not what matters; it’s what’s inside that makes us who we are.

In that instance, I agree, but it’s not always true. Sometimes, words matter. Names matter. Especially in the chronic illness community.

It’s a battle I’ve had with countless doctors over the past 15 years. When I started trying to find out what was wrong with me, doctors suggested that it was all in my head. They wouldn’t give my condition a name, and I was left lost, hurting, and hopeless.

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When a rheumatologist finally began to approach a diagnosis, I was elated, briefly. I finally knew that I had “some kind of arthritis, probably autoimmune.” The doctor explained that several conditions had similar symptoms, so it was just a matter of figuring out the name of mine.

After a few months, he no longer seemed concerned with naming my condition. We knew the family, and that was enough for him. I tried explaining to my boss what I was dealing with and that I might need to work from home or take time off when I had treatments or flares. But without a name for my condition, she was reluctant to make the accommodations I needed.

I decided to try another doctor, to see if she might be able to figure it out. Over the next few years, we went through myriad diagnoses. I didn’t quite fit the diagnostic criteria, but my presentation was close enough to suggest “atypical” rheumatoid arthritis, lupus, or psoriatic arthritis. Even without knowing for sure, my rheumatologist had to enter those names into my chart to prescribe the treatments that she thought might alleviate my symptoms.

What’s in a name?

A name often comes with expectations, though they might not align so well with reality. I’ve had fun with that discrepancy, especially since I got married.

From 2000-04, I taught English classes at the City University of New York. The first day of every semester was always my favorite. Without fail, I’d see at least a half-dozen students walk into my classroom, look at me, look at their academic programs, and walk out. They’d look at the room number on the door, back at their programs, and back at me. Sometimes they’d walk up and down the hall before coming back in, still perplexed. They just couldn’t understand how Professor Wong could be a young white woman.

But it’s not always so entertaining.

The names of our diseases often come with expectations, too, and they can create challenges when we don’t meet them. In the United States, sarcoidosis affects African Americans (especially African American women) far more than Caucasians, and 90% of sarcoidosis cases include lung involvement. Consequently, when I complained of muscle and joint pain, rashes, and severe fatigue, sarcoidosis wasn’t even on my doctors’ radar.

When I was finally diagnosed with sarcoidosis in 2015, everything changed quickly. We altered my treatments and added additional specialists to my team. I found information, organizations, and other people living with my disease. I quickly became a member of the sarcoidosis community.

That said, the name of a rare disease may not be quite as meaningful to the general public, or even some doctors. If they haven’t heard of sarcoidosis, they don’t understand that it can be a severe chronic illness that feels far worse than it looks. Too often, we’re told that we look good and “at least it’s not cancer,” then we’re dismissed without a second thought.

Sarcoidosis can also lead to another name, another word that carries a great deal of weight. Up to a third of patients require long-term treatment, and some, including myself, become disabled.

By the time I was forced to stop working and apply for Social Security disability payments, I’d been writing about my health in a personal blog for a few years. In one piece, I wrote explicitly about being sick and disabled, and about how I found ways to avoid saying it outright. Looking back, I realize how much internalized ableism I was fighting at the time, and I’m so glad I’ve outgrown that (mostly).

Names do matter, especially in the rare disease community. While we may want to consider the expectations that go along with a rare, often invisible, and sometimes disabling condition like sarcoidosis, we must keep in mind that we’re still individual snowflakes, and our disease presentation may be as unique as we are.

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.


Elizabeth Spiro avatar

Elizabeth Spiro

Hello, Kerry. Yes, there is a huge amount of weight in a name. I was finally diagnosed with Sarciudosis when I was 40 years old. That was 36 years ago. My word seems like the lifetime it was, and that name made a real difference to me and my life. I don't know how long I really had Sarcoidosis. I was ill with various symptoms for several years, but it finally came to a head when I had all the symptoms you mentioned and the lung involvement, with a constant dry cough, and difficulty breathing, my feet and legs swelled so I couldn't walk well or wear shoes. The fatigue was outrageous. Joint and muscle pain didn't respond to any treatment. I was certainly disabled but didn't know to put a label on it. I kept fighting to function, to find a doctor who would or could give me a name to this mess and help me with treatment.

Had this happened today, I would apply for disability as I know how much I needed regular rest and stress reduction. And, the effects of aggressive treatment. Wow! That would have saved me so much pain and discomfort.

Congratulations on your acceptance of the disease and its many tentacles. Very different times, but you met your diagnosis head-on with open eyes.

Interestingly, recently a young doctor told me I may never have had Sarcoidosis! I looked at him in total horror. What a horrible thing to say to an older patient who's suffered years with disease and diagnosis. It was as though he pulled the earth from beneath my legs. He's mistaken. I do and did have Sarcoidosis. I was legitimately diagnosed with a biopsy of my lungs. I'm blessed today to have improved due to good treatment, many painful battles with the disease, and various doctors. But, I'm knowledgeable, my own advocate for proper care and treatment, and fight for myself and others whenever needed.

I'm a survivor. Due in great part to the plain, difficult but simple diagnosis and the words, we now know you have Sarcoidosis. Not Lymphoma. Not Lupus.But Sarcoidosis. And, we can help you feel better.

I did feel better and traveled a long journey to find the strength to fight for myself as I moved into a functioning life. I urge everyone to fight for themselves, insist on a clear diagnosis, and understand what they must do to improve their days. Then, go forward.

🦋 Kerry Wong avatar

🦋 Kerry Wong

Wow, thank you for sharing your story here, Elizabeth. You are absolutely right - we are our own best advocates and need to find our voices to speak up when others try to drown them out. Just like you, I had a doctor suggest that maybe it wasn't sarcoidosis {with absolutely no evidence, even before any tests). I remember how much that threw me for a loop precisely because I had come to accept that I had sarcoidosis and everything that went along with that. I'm glad you've found the strength to survive, and the sarcoidosis community is fortunate to have people like you sharing your stories too.


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