When Should I Tell Others About Sarcoidosis?

Kate Spencer avatar

by Kate Spencer |

Share this article:

Share article via email
patient advisory committee

It was my initial desire to explain my sarcoidosis diagnosis to the people around me. Whether they were individuals I have known for years or those I had recently met, I wanted to be honest and open.

But one day I stopped doing that. It’s not that I don’t want to be honest any longer. Instead, I began to sense that not many people need that information. In fact, some seem uncomfortable or uninterested in hearing it.

With those I had known for ages, the update seemed appropriate, even necessary. After all, I had experienced changes in my behavior, my ability to attend functions, and even my desire to make plans. Once I told that group of people, however, it didn’t need to be mentioned again. The “to tell or not to tell” dilemma ceased to exist.

However, a dilemma that continues is whether to tell people who are new in my life. When is the right time to tell someone? If I bring it up too soon, it might be awkward. I sense it could be frightening for some, as though sarcoidosis might be contagious.

At the same time, I know if I wait too long with this newer group of people, the appropriate time might pass. Would these same people be puzzled about why I waited so long to tell them? Would that affect our potential friendship?

Relationships are tricky enough when managing sarcoidosis. I certainly don’t need any additional challenges.

According to one study, it’s common for people with chronic health conditions to feel a stigma associated with their diagnosis. The question is whether it’s truly an external experience or more of an internal expectation. Some of my concern regarding the dilemma of telling stems from this.

I attempt to use my best judgment in these situations. Based on the person, how we met, and how often we’re in each other’s company, I decide whether and when to tell.

In the early days after being diagnosed, I wore my diagnosis like a badge of honor. I had earned it. Now I feel I’m more likely to hide the condition, uncertain of how it will be received. That’s not difficult to do, considering that sarcoidosis is an “invisible” illness.

I still don’t know the correct way to handle this aspect of managing a chronic health condition. But like all other aspects of this altered life, I’m doing the best I know how, one day at a time.


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 sarcoidosis.


Dorothy Goines avatar

Dorothy Goines

I am a Sarcoidosis Warrior. I was finally diagnosed in 2004 after years of lab work, tests, xrays, etc with no answers. As a result of this frustration. I do not feel there is any one time to tell others. I believe whenever the opportunity presents itself one should share their diagnosis and any additional information/challenges that might help others. The mystery of this disease with no cure makes it more important to try and make a difference by sharing what might save some lives; which is why I shared my personal challenges and experiences in my self published book (Sarcoidosis: What You Don't Know Could Kill You). It can be previewed and purchased on Amazon.com. It provides a great springboard for those who are serious about making a difference while living their life like its golden.


Leave a comment

Fill in the required fields to post. Your email address will not be published.