Growing up, Cystic Fibrosis was never a big part of my life. I was hospitalized a few times during my first year when I was really sick, once when I was seven, then not again until I was nineteen. I didn’t pay much attention to it other than daily treatments.

I grew up in a small town. When I say a small town, I mean an extraordinarily small town, as in, I graduated with nine people in my class – yes, it was a public school. So to say that word traveled quickly, gossip was prevalent, or everyone knew your business… was an understatement.

My parents made the choice not to tell many people about my diagnosis. Family and close friends knew, but otherwise, it wasn’t public knowledge. The school system didn’t know, my friends at school were unaware, and everyone in town wasn’t in the “know” either.

I want to tell you that it was a blessing. A huge blessing! I was made fun of because I was skinny. Typical questions I got asked: “Are you anorexic? Do you throw up?”  The clubbing in my fingernails… “Are those alien fingers?” I went to the nurse to take my enzymes before lunch: “Oh, Lara is taking her crazy pills again…” I cannot imagine what the ridicule would have sounded like if peers had known about my disease. 

Kids can be so cruel and ruthless. They spew words that slice the most vulnerable parts of you in a quick minute. The thing with words is that they play over and over again in your head. I tend to think that getting punched in the face may be the lesser of two evils; a physical bruise may leave a mark, but words can slice you to the core of who you are – take root and change the way you think about yourself and the world. Words have the power to hurt or heal. And often times, unfortunately, school is the worst place for words that aren’t so funny.

In high school, I played softball and was a cheerleader. I ran two miles in practice. Nothing slowed me down. You would have never known that I was battling genetic lung disease because most of the time, I was a faster runner than my peers. I was tall, thin, and in great shape. What could be wrong?

Once I got to college, life got stressful. It’s a lot to be thrown into being a full-time caregiver for yourself, all by yourself. It’s another to add attending classes, writing papers, and studying for tests to the pile. I figured this out my second year. Since then I’ve been hospitalized more frequently and have experienced a decline in my lung capacity.

In college I would have to take a few weeks off to be in the hospital. When discussing the situation with professors, some were so wonderful and supportive – they gave me extra time to complete assignments, checked in regularly to see how I was doing, and met with me individually to help me catch up. And then there were those few that just didn’t “get it.” Some didn’t want to get it. After explaining my condition, they would tell me to “rest up and take some extra vitamins” like that would cure all of my ailments in a flash. 

Some would look at me and say: “…but you look fine” in disbelief at what I was telling them. This is when CF can be challenging to say the least.

The majority of the time, I do look “fine.” There are no external factors indicating that I have Cystic Fibrosis. I’m not in a wheelchair, I don’t have a growth on the side of my neck, and there are no visible accessories that I carry around. In these moments CF feels like a blessing and a curse.

It’s a blessing that I don’t have to wear my disease on my sleeve for all to see. It’s nice to go out and about and not have the looks of pity, the million questions, or being completely ignored.

It’s a curse because when I don’t feel well, sometimes others don’t believe me. I’ve worked really hard on not caring what others think. But when it comes to needing people to believe you – like doctors, disability workers, and the like… that’s when it hurts.

Up until two years ago, I’ve never had to use oxygen (with the exception of being sick in the hospital) at home. This past year in particular has been a really tough year for me and I’ve experienced significant decline. For the first time I’ve had to go out in public with an oxygen tank. Let’s just say, that I had a fight with my ego. It went a little something like this:

One of the most important people in my life (my sister) gave me some tough love, something that she’s the best at giving and that I definitely need. Sometimes…we all do.

I had just told her how hard it was to go grocery shopping. That I felt like I was going to pass out.

She told me:“Lara, you just told me that you almost passed out in the grocery store…why didn’t you bring your oxygen tank?! Are you afraid what people will think when they see you? 

They’re gonna look at you and see how brave you are fighting for your life!”

Oh. Perspective is everything.

The moral of the story, is that not everything is as it seems. Judgment can rear its ugly head in any scenario causing us to retract further into ourselves. Today, however, I want to challenge you to do the exact opposite.

You see, the problem here, a problem that is underlying in most judgment, conflict, or issue that arises amongst any relationship in your life is a lack of education and communication. If we make a point to educate others about ourselves and communicate about misunderstandings regarding the reality of the situation, then we can bring understanding & unity rather than hostility & resentment.

It’d be easy for me to say,“It’s none of their business and they just don’t get me.” But what does that solve? All it does is show the nasty layer of ego that we carry around and resist dropping like a bad habit.

When people ask me now or give me that look of bewilderment, I’ve practiced a softer answer. CF is not a “common” disease, not many people have even heard of it. And even fewer people understand the inner-workings and happenings. My response to their questions or lack of knowledge can either build bridges or set them on fire – I choose to open the door to having a conversation. In doing this it teaches others that there is far more to a person than what meets the naked eye, things that are happening behind closed doors that we can’t begin to realize, recognize, or understand…until we are open to learning beyond what makes sense in our own little worlds.

 

Help Others Live STRONGER and LONGER- 

    

   

 

 

Lara is 30 years young living in Vermont. She has Cystic Fibrosis and is currently listed for a double lung transplant. Filled with hope, positivity, and gratitude; Lara enjoys adventures, nature, and belly laughs with her loves. She believes Jesus walks and pants are the devil. Passionate about spreading encouragement, she always lends an ear to those in need. Learn more about Lara on her facebook page at: www.facebook.com/Lungs4Lovey

 

 

 

***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation***   

 

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