Featured Article:
Disclosure Dilemma
What would you do?
You're at a party. Your cough is particularly bad tonight. No one there knows you have cystic fibrosis. You excuse yourself to go to the bathroom during a coughing spell and, when you're about to walk back into the living room, you hear your friends talking in low tones. “He coughs like that all the time in class, too.” “What is it?” “I don't know. Maybe he's sick.” Do you tell them about your CF?
Here's another scenario:
You've been dating someone for almost a month, but you haven't told him about your CF. One night you're curled up on the couch together to watch a movie, when he pops the question you've been dreading. “I've noticed that you cough a lot. Are you all right? I saw some medicine in your bathroom and was wondering...?” Sound familiar?
To tell or not to tell?
People with cystic fibrosis face the question of whether or not to tell others about their CF on a daily basis. There is no “right” answer to the question. Indeed, the answer frequently changes from situation to situation. Research indicates that people with CF typically assess the social “risk” factor of disclosure:
- Low-risk: Short-lived social contact with a low level of intimacy means very little to “lose” through disclosure
- Medium-risk: This typically comes with a higher level of intimacy, and importance placed on the other person's reaction to the news
- High-risk: When the consequences of disclosure could lead to severe consequences, as with employment
For some, a kind of social/financial cost formulation helps guide the decision of whether or not to disclose. Does the risk of being treated as a patient, losing a job, or watching a relationship flounder outweigh the potential benefits of more support and empathy from friends, colleagues and employers?
Some situations make keeping your CF private nearly impossible. Living in college dormitories is one of them. When Andrew settled into his new digs at his four-year college, he made disclosure a priority. He wanted people to know what the vest and nebulizers were all about so that he could head off any “talk.”
“One of the first things I did was go through and tell everybody,” says the 24-year-old actor. “I got it out there right away and everyone was perfectly cool and respectful.”
Pete took a different approach. He tried to keep his CF under wraps his freshman year at the Citadel, the military school of South Carolina. He stored his medicine and machines in the school infirmary, and then walked across campus twice a day for treatments. The effort proved undoable, however, and his health deteriorated, forcing him to leave school.
When he returned the next year, Pete made the personally difficult decision to do his treatments in his room. Despite that decision, he only shared his CF with a handful of friends, and then it was only on a need-to-know basis.
“I wanted to be like everybody else,” remembers the now 25-year-old. “I didn't want to be 'that kid who had special needs.'” When he graduated four years later, his fellow classmates were shocked to learn about the young man's cystic fibrosis. For his part, Pete was surprised at the amount of support and understanding he received from his fellow cadets and his Citadel commanders following the disclosure of his cystic fibrosis prior to graduation.
