Drawing the line . . . how much to tell

Who have you told about your illness? How much do you generally tell people and when do you tell them? When young adults are faced with a disease such as pulmonary hypertension they have to negotiate these issues
whenever they deal with their employers, universities, co-workers, new friends
and even dates.

Before my PTE surgery I often got very stressed at the thought of telling people about my illness. I never quite got the hang of knowing when to tell or what to tell. I didn’t develop the thick skin necessary to combat the sometimes negative or naïve comments an explanation sometimes drew. My worst experience of dealing with an employer was when a supervisor asked what type of illness I had. I told him a lot about pulmonary hypertension and even handed him a PHA brochure. His response? “So, really, there is nothing wrong with you.”

What I didn’t understand at the time is that the key to this, just as divulging any personal issue, is drawing boundaries. It does not have to be an all or nothing scenario. I’ve learned that I can tell my boss just enough to allow for any flexibility I might need without feeling like I am crossing
the employee/employer line.

I’ve noticed that generally friends and co-workers are sometimes uncertain about how much to ask or, reversely, ask too much. So you learn to draw the line yourself. I now only reveal the information with which I feel comfortable. On the other hand, dropping some casual comments into the conversation will also let people know that it’s ok to talk about the elephant (or O2 machine) in the room.

Dating is another minefield when it comes to revealing information. You might have a stock statement you use in scenarios such as this, one that offers an explanation without being overwhelming. Even as someone who is comparatively healthy, I am still cautious about revealing my history and the effect PH had on my health in recent years. I’ve learned to go
with my own instincts. If I don’t feel I can trust someone I hold back until I get to know them better. Recently, I chose not to immediately reveal my last name to someone for fear they might google me and find my connection to PH before I was ready to tell. Instead, I slowly disclosed over time the impact the disease had, and continues to have, on my life.

For me, putting these boundaries in place, gives me a sense of control. It allows me to write my own narrative on what is, at the end of the day, my story. This is what works for me.

How do you deal with this? Where do you draw the line?