What It’s Like to Be the Partner of Someone Living with CF

IMG_1657If you aren’t already aware, May is Cystic Fibrosis Awareness month. Originally, I was going to have this post include 31 facts about CF (one for every day of the month). But, I decided I wanted to do something more unique, I just wasn’t sure what. Then, I came across a post where a fellow CFer did an interview with his girlfriend about how CF affected her, and thought this was a perfect idea!

I sat down with Jason a couple of nights ago and asked him 10 questions. It’s hard to get Jason to open up sometimes, so I did my best to encourage him with his answers when necessary 😉

So, here is Jason’s perspective on what it’s like to be a husband to someone living with CF. Enjoy, and happy CF awareness month!

  1. Do you recall when I told you about my Cystic Fibrosis? What was your reaction when I told you about having my CF?

I remember it was a long time ago. I’m pretty sure I didn’t have a big reaction because I didn’t know what it was. We were just friends at the time, but I remember asking you questions about it and you pretty much told me the basics.

 

  1. How does my having CF affect your life? How do you feel it affects decisions you make or feelings you have on a day-to-day basis?

Obviously it’s a big factor in my life because I need to provide for you. So I’m always thinking about insurance, jobs and making sure I encourage you to do treatments and eat more-stuff like that-but not be over-bearing. I have to think about certain aspects if we are going on a trip or things like that. Sometimes it makes me scared if you’re sick or not feeling good.

 

  1. What are the hardest and best parts about my having CF?

The hardest part is the fact that you will always have it and you will always have to take extra care of yourself and that it can hinder things you want to do. The best part about you having CF is all of the opportunities that you have received to help others and encourage them. That’s pretty cool.

 

  1. What is something you wish I would do differently in sharing my life with CF?

I don’t know. Ever since you got out of school, you’ve been really good about everything. You’re really good at taking your pills, doing your treatments and doing your tube feeds.

#winning

 

  1. What do you think is the most important part of being a partner of someone living with CF (or any chronic disease)?

You have to always be supportive and you have to trust that they know best, most of the time.

 

  1. How do you stay positive in facing life with me having CF? Are there tools or strategies you use?

I just remember that you’ve had this for a very long time, but that you’ve always had pretty good health, which is nice. Prayer and leaving it in God’s hands helps cope, as well as the fact that you take good care of yourself; I don’t have to worry too much.

  1. Am I the first person you knew with CF?

Yes, for sure.

 

  1. What advice would you give someone who is starting out in a relationship with someone with CF?

Don’t let it be a detriment to how you view the person. Talk with them about the illness and ask how it affects their life. Ask how they feel it limits them or doesn’t limit them, and make sure you understand the disease.

 

  1. How do you tell other people in your life about me having CF? What have people’s reactions been?

Whenever it comes up and I have to tell people, I normally just briefly explain it-the breathing issues and GI issues. Most people don’t have too big of a reaction because most people haven’t heard of it.

 

  1. What impact has my CF had on your life? Have you had to change your life at all to accommodate certain aspects of CF?

I take off of work to drive you to your doctor appointments and I have to make sure we are being diligent about saving money for health insurance, medications and clinic visits. A big thing is that we are thinking of adopting instead of having our own children.

 

After going through these questions with Jason, he made me realize just how much he truly cares for me and loves me. What a blessing to have this man for my husband!

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