Getting a diagnosis of any chronic disease later in life is a shock. It can also be a relief to have an explanation for the symptoms you've been experiencing for years. Whatever reaction you have, your world, as you know it, changes. This is my story.

The average life expectancy of someone with cystic fibrosis was about 30 years old when I was diagnosed at age 43 in 1993. I was already beating the odds. Today, I am 75, and I am one of over 3,000 people in the United States with CF who are 50 years old or older. 

Before my diagnosis, I spent 43 years blissfully unaware that anything was wrong — no symptoms, no health issues, nothing out of the ordinary. I grew up in Seattle with my mom and dad, and two younger siblings. I went to the University of Washington and became a high school teacher in an alternative program for pregnant teenagers. I got married to a college professor, and we traveled the world through Semester at Sea. Life was good. In my 30s, infertility became an issue for me, and I had lots of tests and drugs, and a few surgeries, with no result. We eventually got divorced, and a few years later, I adopted a little boy as a single parent from an orphanage in Russia.

Then, twice in one year, I had pneumonia. I saw my doctor, and he recommended that I see a pulmonary specialist. He ordered a CT scan of my lungs and told me that he guessed that I had either worked in a coal mine for 20 years or was in the last stages of AIDS! I took a sweat test, and the doctor left the result on my voicemail, “You have cystic fibrosis.”

I knew what CF was because I had home-tutored a 13-year-old with CF who couldn’t attend school because of his frail condition. My first reaction was, “I’m going to die!” I was a new mother with a beautiful baby boy and had a good job. I didn’t have time to be sick. I certainly wasn’t ready to die. This could not be happening to me!

What I needed was information. I didn’t know where to start. It wasn’t like today, when I can ask Google for information. In those days, we had phone books. When you looked up “cystic fibrosis,” you found the phone number for the Cystic Fibrosis Foundation. I made an appointment. It turned out that they weren’t a health facility, but they did have lots of good brochures about the disease. They told me about an adult CF clinic at a hospital downtown. I made an appointment there and found my people.

Once I had the tests and met with a geneticist at the clinic, my diagnosis was solidly confirmed. I didn’t feel any different physically after that, but it sure did a number on my mental health.

My future stopped being predictable. All of my hopes and dreams for my son disappeared instantly. I had never contemplated my death before, and now it stared me down.

I decided that since I didn’t have a long time to live, I was going to do everything with my son sooner rather than later. Over the next few years, we spent a week at the beach, visited Disneyland and Disney World, took a cruise to Alaska, went to London, took ski lessons in Colorado, and did horseback riding at a ranch. You can imagine the cost involved, and yes, I went into debt. But I didn’t care because I was going to die soon — big mistake. To my surprise, I kept living! It took me five years to pay off my debt.

I secured a position at my state’s Department of Education, offering better pay than a teacher's salary, and served as the consultant for health education across all public schools in the state. In addition to the irony of my last job working with pregnant teenagers while struggling with infertility, now I had a health promotion job while having an incurable disease. Somebody up there has quite an ironic sense of humor.

For the first few years, I stayed healthy. I worked full-time, and my son attended a childcare program very close to my office. I didn’t tell any of my friends or work colleagues about having CF. I went about life with my “secret” disease, constantly worrying about death. If I needed to travel for work, I frequently cut my trips short so I could return home for my son. Time spent at home became my priority.

Then, I got sick. It was a lung infection that required IV antibiotics for two weeks using home health care. All of a sudden, I needed help. Since I lived far away from my family members, I had to let my friends and boss know that I had CF. Guess what? They were all extremely supportive, and I immediately had volunteers to take care of my son, run errands, do laundry, and even visit with me. One friend even told me she would pray for me. My boss said I could work from home when I felt up to it. This was a big lesson for me. My support system was invaluable.

This was my new reality. I was a person with CF. That is how I started to think of myself. It was my new identity. Over the past 32 years, my journey with cystic fibrosis has progressed from those initial concerns about mortality to effectively managing it as a chronic condition. My story is about discovery. It’s about learning that I am not the disease, and overcoming depression through supportive family, friends, and co-workers. It’s about living beyond expectations and then reshaping them. Onward!

Interested in sharing your story? The CF Community Blog wants to hear from you.