A Letter to Myself During My Diagnosis From the Future

Last updated: January 2023

Dear Little Girl on the Day of Your Diagnosis,

Hey, there! It’s great to see you. You look so sweet and innocent with your bleach blonde bob with bangs and a beaded necklace. (Note for the reader: I was 4 years old when I was diagnosed). The little girl I see is so skinny, almost skin and bones, but there’s the classic potbelly I have seen in old pictures.

Just looking around, it is so weird to be sitting in this exam room with the strange picture of the gum ball machine on the wall. This exam room has changed so much over the last 28 years!!! Everyone from your CF team looks so young and fresh. I guess, years and years of CF-related stress isn’t so kind to the body–cheers to that!

A day for the history books

Today is a day that will forever go down in the history books of your little world. My dear, you are so unaware of what today means, but that’s ok. For today (and for quite a while), it’s ok to be in the dark. It’s ok to have no grasp on how this disease will influence every decision you make moving forward. That awareness will come in time in small strides.

With each year, you will discover a different understanding of CF, different joys, and heartaches surrounding the news you received today. Your CF journey is filled with growth and setbacks, ups and downs, and a lot of searching for and gaining peace. You will get there.

Not despite CF…

Let me clue you in on a bit of what is to come. You will do a lot and accomplish a lot with CF. Not despite CF; but with it. It’s not always easy but somehow, some way you succeed in high school, go to the college of your dreams, graduate and work, get married, carry two pregnancies and become a mom. You even get to share all about your experiences living with CF through writing.

You are very busy and people will wonder how you do it all. In truth, a lot of it is a fake-it-until-you-make-it situation. Sometimes, that catches up to you and your body says "no more." All in all, you do so much even with CF, you are flexible, and always looking for the best; it’s something to be proud of.

The future is bright

Unfortunately, you will spend a lot of time struggling to breathe and dealing with chronic pain. For a couple years after the birth of your first son, it gets really tough. I am so sorry for all you will go through during this time. It’s not easy to think about, but you are so tough! You will get through it.

Amazingly, a new medication is released and it changes your life. Things get so much better! Your lung infections get better, you spend less time on IV antibiotics, and you even are healthy enough to carry another pregnancy. Keep looking to the future when things get hard, there’s hope coming!

In reality, CF will make you who you are. Hold tight to the joys you can squeeze from all your experiences. Let people help you through it. And please know, your mama sitting next you–digesting all the new and scary information–will be with you every step of the way.

Keep Your Head Up,

Your future genetically-modulated-self

What would you say in a letter to yourself about CF? Share your ideas in the comments below!

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