David Kinnear: To Tell Or Not To Tell: Opening Up About Your Chronic Illness

[medical] patient,” according to Barron H. Lerner. Lerner believes the movie about Gehrig’s illness and ALS diagnosis, The Pride of the Yankees, set the modern standard for celebrity deaths with its theme of “unabashed heroism and sacrifice in the face of illness.”

While celebrities often use their notoriety to raise public awareness of chronic disease or to challenge the way specific illnesses (and those who suffer from them) are stigmatized, most of us who live with chronic illness aren’t famous. And we harbor a very different set of worries and anxieties when it comes to disclosing our condition.

Especially in cases when the diagnosis comes as a surprise, people who have recently learned that they have a chronic illness will often ask: How do I explain work absences to my boss without jeopardizing my career? and What if so-and-so reacts to this personal information in a negative way? If you, too, have had these questions, you’re not alone.

Although it’s not hard to find self-help books that are full of advice about how to tell others about your chronic illness, no two individuals experience chronic illness in the same way. Because every person’s situation is unique, it can be difficult to determine the best way to open up about your illness to other people, or when maintaining your privacy is in your best interest.  To help others navigate these sensitive situations, below I discuss several ways of approaching situations that people living with chronic illness commonly face.

People who say “you don’t look  sick…”

Chronic illnesses are often hidden and not easily perceptible to people who aren’t in the know. Although it can be tempting to scold the stranger who gives you the evil-eye for parking in a handicapped space, chastising a stranger isn’t very productive. Unless the person in question is openly hostile, I prefer to give people the benefit of the doubt. This proverb, I think, is also fitting to keep in mind during those moments of frustration: If everyone brought their troubles to the marketplace and assembled them all in a great pile, each person, upon seeing the rest, would be content to take back their own.

Disclosing your illness at work

For many chronic illnesses, symptoms usually begin to present themselves during early adulthood. As a result, many people who are diagnosed with chronic illness receive their diagnoses just as they are starting to build a career and make inroads professionally. When you’re positioned among the lower rungs of a career ladder–with fewer employment benefits and far less job security–one of the most difficult decisions is choosing whether or not to disclose your condition to supervisors and colleagues.

“Unfortunately, the answer is never clear-cut,” says Irene S. Levine in an article she authored for AAAS Magazine. “The consequences of telling or not telling, either of which can be costly, are hard to predict and may vary according to your illness, job, status in the workplace, and the nature of your relationships at work.” However, in an ideal workplace, support and empathy from sensitive colleagues can help chronically ill employees both cope with and better meet the demands of their job.

Telling young kids

The amount of information and level of detail about your illness that you should disclose will depend on the age of your children as well as their cognitive abilities. While it is important not to overwhelm kids with too much information, chronically ill parents should never lie to their children or give them false hope about the state of their condition. Once you have a clear assessment of your medical situation, it can be helpful to make an appointment with your doctor to discuss the potential ways your illness could affect the lives of your kids. You can also seek your doctor’s advice about when to tell your children about your illness and how to answer questions that your children may ask.

My Journey

When someone is newly diagnosed with a condition that is expected to last for months or years, he or she faces a daunting set of challenges encompassing all facets of life: medical, emotional, social, and professional.

My first symptoms appeared shortly after I graduated from college.  My adult life was just beginning and there was much I wanted to accomplish.  At the time, I felt that talking about my condition was a distraction and I didn’t want it to be an excuse for failure.  I chose not to tell people outside of my immediate family about my condition because I didn’t want other people to see me as a victim or to think any differently of me.

However, I couldn’t have predicted the sense of catharsis I felt when I recently decided to speak publicly about my experience.  While living with MS is always unpredictable, I felt more comfortable with its course after living with it for over 20 years.  

Additionally, many of the uncertainties that existed at the time of my diagnosis have been resolved.  Since then, I got married, moved to a new city, went to graduate school, had two wonderful children, developed a lot of great friendships and built a successful wealth management practice.  As someone who is now almost 50 years old, I’m more secure and the reasons for my silence seem less relevant.

Talking to others about what it’s like to have MS isn’t easy for me, but by doing so, it has helped me to realize that MS is part of who I am.  For me, sharing my experience has been somewhat therapeutic as it feels like an enormous weight has been lifted off my shoulders.