Out of the CF Closet
By Victor L. Roggli, MD
Today’s social culture is highly protective of patients’ personal medical information. The Health Insurance Portability and Accountability Act (HIPAA) provides stiff penalties for anyone who releases a patient’s private health care information without their permission. No one has the right to know about your health issues unless you want them to, and that includes family members. If you have health concerns, your secret is safe with your medical providers.
There are good reasons for protecting your health information. Employers could use the information to discriminate against you, businesses could decide not to deal with you, friends and neighbors might reject you or avoid you. And why shouldn’t you keep the information to yourself? After all, it’s your life and you can live it as you want. No one needs to know about your health issues unless you expressly confide in them.
When I was growing up with cystic fibrosis, only my close friends and family knew about my illness. With anyone that I didn’t know well I was secretive about having CF. If a stranger or casual acquaintance asked about my cough, I told them I had a cold. Or maybe allergies. If they asked about the medications I took with my meals, I told them they were vitamins. I didn’t want people to feel sorry for me, or even worse shrink away in horror because I had some dread disease.
I certainly didn’t want my classmates to think that I was weak. If I told them about having CF, wouldn’t they think I was defective? Or, heaven forbid, divergent? I was afraid that I would be rejected because I was different.
It hurt to think that I couldn’t be like everyone else, instead of having to take all these special treatments or not being able to participate in competitive sports. In short, I wanted to be accepted for who I am and to “fit in”. Of course, in the process, I was denying who I really am.
The secretive approach seemed to serve me well through college and medical school and residency training. I carried it with me to my new job at the medical center in Durham, NC. Only my immediate supervisor and a few close associates new the truth about my health. As my career progressed, I became involved in medical-legal cases in which I had to give depositions or even sworn testimony in the court room before a jury. I had to swear to tell the truth, the whole truth, and nothing but the truth.
The truth meant that what I said was in fact correct to the best of my knowledge. The whole truth meant that I did not intentionally leave anything out that was important. And nothing but the truth meant that I did not mix in any false information with my testimony. I began to realize the hypocrisy of practicing these values with respect to my career but withholding the truth with respect to my health and my relationships.
At about the same time, I began to attend CF education day at Duke (before we CFers were banned because of cross-contamination concerns). While serving on the adult CF panel, I was amazed at the honesty and openness of the other panel members as they shared their stories with other CF patients and their families. I began to realize that as a result of my secrecy and denial, I wasn’t letting people in to know who I really was. I had been a closet CF patient, divulging as little information about my health issues as I could get away with.
So I began to be more open and honest about my illness as I met and interacted with new people. I was amazed that these people did not shrink away in horror when I told them about having CF, and that they responded positively to my openness and directness.
In truth, it was reassuring to others that my cough wasn’t due to some contagious disease that they might catch by being in the same room with me. Or that the medications that I took with meals were not for some dread disease that they might be susceptible to from sharing the same dinner table with me.
I learned that honesty with strangers about having CF has helped me with my honesty in my personal relationships, in being able to reveal who I really am. I no longer try to hide the fact that I have CF. And consequently, I find myself better prepared to face the fear and anger that come with having a chronic, fatal illness. Now I can finally embrace CF as being part of who I am.
Of course, when to share and how much to share about having CF is a very personal matter, and each individual (and his or her family) must make this decision on their own while coming to grips with this disease. For me, I discovered that the positive responses and advantages I experienced as a result of sharing who I am far outweighed the negative consequences that I had feared and imagined.
About the Author: Victor Roggli is a professor of pathology at Duke University Medical Center in Durham, NC. He was diagnosed with CF in 1963 at Vanderbilt in Nashville, TN. He has had genetic testing twice and is a deltaF508 homozygote. He grew up on a farm in Tennessee and is the third of four siblings. He enjoys Duke basketball and is a karaoke enthusiast, having recorded more than 300 songs. He is married to Linda, the love of his life, and has a daughter, two step-sons and two grandchildren. He is 68 years old, still working full time with no plans to retire.