People With CF: In It Together

Cystic fibrosis can be isolating, but people with CF know what others go through every day. It makes the moments of connection all the more meaningful.

| 3 min read
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Matthew Lail
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Dear fellow person with cystic fibrosis:

I want you to know I see all you do, and I am proud of you.  

Our families saw our daily treatment routines when we were kids and then watched us leave their homes -- taking our routines with us. Our friends hear our stories about being sick or visit us in the hospital, but don't see or feel all we go through. Our co-workers think we are the guy or girl who coughs a lot, misses work for doctor appointments and routinely takes sick days.

If you have a significant other, they see your daily routine and hopefully pitch in where they can, but it's ultimately up to you to carry the burden.

But, I want you to know I know what it feels like to:

  • Get up at 5:15 a.m. and do treatments before work
  • Take your intravenous antibiotics to work and run them on your lunch break
  • Finally access your own port, after many failed attempts
  • Boil nebulizer cups and cook dinner at the same time
  • Be on the phone with the pharmacy at work while sending a firestorm of emails at the same time
  • Go to the gym every day to keep your lungs strong
  • Pay your hospital bills and co-pays
  • Stock your own in-house pharmacy drawer in your kitchen
  • Have to come home and do treatments late at night after dinner out with friends
  • Cough up enough blood to scare you to into going to the ER
  • Wear an insulin pump
  • Go to bed at 8:30 p.m. during the week
  • Be in the hospital on holidays
  • Pack for vacation and drag your vest through airport terminals
  • Feel like crap on the inside of your body and look normal on the outside

Through a mutual friend, I had the chance to speak to another person with CF on the phone a few weeks ago. It was a great feeling to have someone who could relate to what I go through each day on so many levels. It was an ear to bend and a welcomed confidant. I am going to keep in touch with this person. I recently sent her a text when I finished my IVs over Thanksgiving. We both agreed that "freeing" is the best word to use when you complete your course of IV antibiotics.

I hope this helps you realize that you are not alone. You may feel like you are some days, but you're not -- I promise.

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Matthew was diagnosed with CF in 1988 at the age of 3, and later with CF-related diabetes (CFRD) at 14. Matthew works as a grants specialist for the Virginia Department of Health -- a job he is passionate about because of the health care aspect. Matthew earned his M.B.A. from Liberty University. Prior to this, Matthew earned his B.S. in management and organizational development and his A.A.S. in information and communication systems. In his spare time Matthew enjoys traveling and recently visited London, Paris and Rome. In 2014, Matthew went skydiving in Denver and climbed Silver Dollar Mountain.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.