7 Things You Should Know About Living With Cystic Fibrosis And Balancing A Life In College

7 Things You Should Know About Living With Cystic Fibrosis And Balancing A Life In College

There are lots of days, my best days, where I'm just tired all the time.
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Cystic Fibrosis is a genetic disease that causes a build-up of mucus in the lungs and can lead to severe respiratory problems. It is estimated that 30,000 Americans suffer from the disease, and Brianna Settlemyer is one such citizen kind of enough to grant me an interview about living with CF.

1. What is something you wish people understood about your disease?

I wish people understood that just because you can’t see my disease doesn’t make it any less real for me. There are lots of days, my best days, where I'm just tired all the time. Breathing is something no one thinks about doing and so it’s hard on your body when there’s something going on that makes it harder for you.

2. How can those around you best support you?

I think the best way my friends and family can support me is to just listen when I want to be negative or I’m feeling down. I wish that they could understand that this is hard for me, not only because I’m going through this, but because I know that everyone else in my life is going through this with me.

3. What's the hardest thing about living with CF?

When I was a teenager and healthy and really learning about my disease, I knew there was a good chance I was going to become sicker and my body would get weaker and that life was going to get harder for me. I always knew it was just a matter of time. Now that I’m here I feel like there was more I could’ve done to stay healthier longer. But honestly, the hardest thing about having any kind of chronic illness or lifelong disease is maintaining that balance of normalcy you want so badly.

4. When did you first realize your life would be different than those without CF?

The first time I realized my life was going to be different was in middle school.

When you really start going through puberty and making new friends and everyone’s getting into sports and clubs. I realized many things that were hard for me to accept: 1) Because I had such a hard time gaining weight and growing in all the right places keeping up with all the other girls around me I knew I was going to be hard on myself about the way I looked for a long time. 2) I knew I would never do any kind of sports because I just wouldn’t be able to keep up with everyone and I didn’t want any coaches giving my special treatment. 3) I'd have to get used to having sleepovers and hanging out with friends and having to bring along my breathing treatment machines, my medications, and all my pills with me. I’d have to start telling my friends what was wrong with me, too.

5. Have you lived a different life than you would have without CF? How have you lived differently, if yes?

Although I’ve had a good life so far and there are not too many things I regret doing. I still think I’ve lived too carefully and let my insecurities about my disease hold me back too many times. I think if I didn’t have CF I’d have done high school differently for sure, but I think we all would have knowing what we know now in the real world.

6. How do you maintain a positive attitude about your diagnosis?

I am positive about my disease because I have to be, being sad and angry all the time isn’t going to make me better. In fact, that’s just going to make it harder for me to see that on the other side of this..after the oxygen tanks, and the leave of absence from work, and being trapped at home for several weeks...after the hospital visits that felt incredibly lonely and all the pains and aches and pills and the weekly doctor appointments.

I may actually get a new pair of lungs and I will get to live freely once again and do all the things I’ve been waiting to be healthy for. My lungs won’t have the disease anymore and even though I never wanted to be in this place, I’m here and now I have an opportunity to live a better life. I stay positive because no one ever gets anything truly amazing done by being negative.

7. What is your main goal in life?

My main goal in life is to just be happy and know while I’m living this life that I am happy. I want to enjoy the simple things and the incredible ones. I want to live long enough to help people, however I can. I want to give back to my family. I want to expand my thinking and observe other cultures. I just don’t want to look back at the end of it and wonder if I could have fought harder to be happier.

*Cystic Fibrosis has very serious consequences and Bri is currently facing the possibility of a lung transplant. For more on Bri's story and to help, you can find her gofundme here.

Cover Image Credit: Brianna Settlemyer

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To My Aunt, As She Battles Cancer

As my second mother battles cancer, I can't just sit here and watch.

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My aunt always claims, "You're supposed to my daughter, your mother just birthed you for me."

I am overwhelmed in honor that you see us as so similar, for I would be blessed to be half the woman you are, and the warrior I have watched you become.

Since the day I was born, you have pretty much claimed me as your own. You didn't give anyone a choice. I am your birthday gift on this Earth, so obviously, I belong to you. Just like that, we have been tied to each other's hips my entire life.

A true mother-daughter relationship blossomed so quickly and continues to grow every single day. I am forever thankful to have you.

You were the one I ran to. The one I cried too when no one else understood my tears. The one who gave me strength when I was barely waking up in the morning to see the light. The one who dragged me to church even when it was the last thing I wanted. You were my escape and solitude. You somehow knew everything I ever needed, and provided it, even from states away, and now from a different country. You're my soul mother. You were always there for me, and now it's my turn to care for you.

There is one word that shakes medical professionals and families all over the world. The one disease we pray is not our diagnosis. The one disease that ails every move we make: what we eat, drink, smoke, put on our skin, everything we do, we do to avoid this thing. This monster. The "C"-word my family has unfortunately become so accustomed to.

Cancer.

One year and five months ago, my aunt, my second mother, was diagnosed with terminal stage four cancer. She was given one to three years to live, "if she's lucky" upon her diagnosis. The doctors then told her she needed to be on chemotherapy for the rest of her life. It's like they had given her a life sentence no one ever expected.

How do you even be ready for something like that? How does one even anticipate it?

I am so terrified of leaving her side now, praying it is not the last time I get the chance to be with her.

By some miracle, here we are about a year and a half later, and instead of deteriorating with her condition, I have watched my aunt become the strongest woman in the world.

To those of you battling cancer, please know:

You are not alone. Every day, every breath we take, millions of prayers are sent straight to Heaven on your behalf. We are your support system, your rock, and we will not leave you.

We will bend over backward to see you smile and make sure you're comfortable. We don't mean to be overbearing or make you feel like a burden, we just want to make you smile, a real smile, a smile bright enough to forget your pain, even if for a moment in time.

They say that faith as small as a mustard seed can move mountains. So let's have enough faith to move every cancer cell in your body over a damn mountain. I know it isn't easy. I know it gets hopeless and scary sometimes. But God is above all medicine, above all ailments, and above all fear. God is in control and He will not forsake you.

You are not an inconvenience and you do not deserve this. No one chooses such a diagnosis. But you are all angels who we never see complain… You continue to endure your pain and fight your battle, and you do this for us. We must, in fact, be your burden since you are going through all this just to stick around for us a bit longer, but alas, we want to be your strength.

I remember hearing my 48-year-old aunt pray to God in full faith and submission for just another twenty years. "Please God… I need to see my daughter and my niece get married. I need to be here for my grandchildren and to care for my mother, and most importantly, to honor Your name. Just twenty more years, please God, but I will succumb to Your will whatever that may be…"

It was the most humbling, yet heart-wrenching prayer I've ever heard upon her lips. I was instantly brought to tears, and my heart, instead of breaking, hardened. I can't let this thing take her. I won't.

I imagine many patients all over the world utter the same prayer upon their tortured lips.

We want to be your reason to fight, your shoulder to cry on, and your caregiver. Not because we have to, but because we want to.

To my aunt, so fiercely fighting this monster.

I am your niece. Your soul daughter. I am supposed to be your strength and your rock. The one who prays for you, with you, and holds your hand when I visit. The one whose shoulder you cry on and listens to your concerns. The one who writes you songs just to make you smile. The one you vent to, and I'm supposed to take it. I have to be strong for you, your daughter, my mother, and your mother.

But sometimes, just sometimes, it breaks me. You'll never see it. But sometimes I find myself falling apart, praying for a way I can take away your pain, asking God, "Why wasn't it me instead?" You don't deserve this. No one does. But definitely not you.

I chose to fight this battle with you. I am happy to be here, and I am so thankful you are still here too. I will never leave you. I will never rest, I will never lay low to my heavy eyes and burdened heart until you are healed - until I see you running marathons and sipping margaritas in the Bahamas, as you so often say… we will get you there. We will get you the best doctors in the world, with the latest research and fondest medical technology. You are worth the blood of Jesus Christ, which makes you PRICELESS — don't forget that!

Thank you. Thank you for teaching me how to be a strong woman so I can be a strong woman for you. I'm not sure I can empower you as well as you did me. I'll never be as amazing as you are, but I will sure as hell try. For you.

God will not forsake you and neither will I.

Never forget.

You are loved and supported, no matter what.

Never forget.

Faith leads to miracles.

Never forget.

WE GOT THIS.

Never forget.

And lastly, thank you for battling a war you never signed up for just to be here for us. I know it's a lot. I cannot begin to comprehend what you and other patients must endure in this wretched disease but I will assure you one thing:

You are my whole world, and I will hold it up even with broken arms. I refuse to see you crumble. You are strong and admire you for that. I love you.

Cover Image Credit:

Marina Khalil

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