7 Things Your Partner with CF Probably Isn’t Telling You

By Hannah Buck

Being in a committed, loving, long-term relationship is a distinctly intimate experience. It is the most intimate experience of humanhood many would argue. To see a person walking by and say to them, “Hey, you’re fairly OK-looking. Would you like to hold hands for forever and accrue debt until we die?” is to truly know companionship. That, and watching each other poop.

Chronic illness makes dating a thoroughly more vulnerable experience, and not just for the patient. You see, sickness affects everyone involved. It accelerates everything. Sickness makes daily life complicated (e.g. planning dates that aren’t physically taxing or one partner relying more on the other for help with everyday chores) and the future even less promising than it usually is. When you or your partner has a condition like cystic fibrosis, the bleak reality of your situation is sorely evident. It’s inescapable. One of you will die much sooner than the other. And with that intense reality flashing its lights 24/7, it can be tempting to hold things in.

I don’t speak for all people with CF in writing the following list — but by sharing what I’ve withheld in past romantic relationships, I hope to make you laugh, open your eyes, and help you become a better partner to the person whose hand you like to hold. Enjoy.

Things your partner with CF probably isn’t telling you

1. They’ve been wetting your bed for a while.

Have you ever rolled over in the middle of the night to feel a damp spot on the mattress? Has your girlfriend been known to spontaneously wash your sheets and comforter out of the goodness of her heart? Yeah, sorry to break it to you, it’s not because she’s an angel. It’s because she has coughing-induced, premature incontinence, and she doesn’t want you to know.

2. Their antibiotics give them diarrhea.

It just happens, OK! We don’t ask for this! Antibiotics have one mission: to kill. This includes good gut bacteria, which unfortunately messes up our tummies. Make your partner’s day by surprising them with a bottle of probiotic-rich kombucha to get things back on track.

3. They’d prefer if you looked away during their cough attacks.

Coughing ain’t cute. Yes, yes, I know you love them, but try to put yourself in your partner’s shoes. If you were red in the face, foaming at the mouth, hunched over like the Notre Dame character, and spewing phlegm like a swampy sprinkler, would you want the love of your life to gaze longingly upon you? Probably not. Give ’em space.

4. They wish you visited them in the hospital more.

They just feel too guilty to say it out loud. It is unspeakably lonely to sit in a small room and face the same wall every day. Please, even if they insist they’re fine, be there for them. Stop by. Make the time. If you can’t do that, text, call, or video chat. While 24 hours pass by in a snap in the outside world, in the hospital, the hours drag like you wouldn’t believe.

5. It makes them really happy when you randomly flex your CF knowledge.

Showing your partner that you care about them enough to not only learn about their disease but about how it’s treated is an instant way to grow closer. For many of us, the only people we have to confide in about this part of our lives is our medical team, our family, and occasionally other CFers (but only online). Take the time to learn what’s what — get the medication names right, make yourself an ally, and demonstrate that the two of you are teammates in this fight.

6. Explaining what’s “wrong” with them to other people makes their life so much easier.

With this one, I want to repeat my disclaimer: I am speaking for myself, and every person with CF is different. Please talk to your partner before taking this advice.

With that said, I have always found it to be an incredible relief when my partner discreetly says, “She has something called CF, so she coughs a lot. It’s normal. So anyway … ” and then changes the subject when I have a cough attack around people who don’t know me. Explaining myself is something I’ve had to do my entire life, so having someone else do it for me is a treat I savor every time.

7. They don’t feel worthy of your love, and they feel guilty about loving you.

I hope this one isn’t true for you guys. In my case, it is, and I suspect it’ll be a lifelong battle. Having an incurable illness is a heavy burden to bear, but when you’re born with it, there’s no other option. Putting it on another person, though, that’s different. That isoptional. And it can feel impossible to justify exposing the person whose hand you like holding to that level of lifelong pain.

This post originally appeared on CF News Today.

Virtually Very Cool Conferences

By: Mark Levine
One of the things I love about the CF Roundtable is how it brings the CF community together and is a forum for sharing stories. Stories, after all, are what life is about. So when I heard about CF virtual conferences, I had to learn more.
This past fall I attended my first BreathCon, a virtual conference for CF Adults organized by the the CF Foundation and a lot of volunteers. About two weeks ago, I participated in another virtual conference, a smaller one labeled a Mini-Con, which had the theme of Sexual and Reproductive Health. Yes, it was as interesting as it sounded like it should have been.
As a step-father of two, I was asked to facilitate a discussion on parenting. There were a lot of stories as well as some amazing tips and tricks that are wonderful to hear live. All of the conferences have a theme and they start off with a keynote address followed by break-out sessions (group discussions) with varying topics related to the theme. When I first signed up for one of these events, I had no idea how a virtual break out session would work but I have to confess… they are really cool.
The platform, or software, that is used is called BlueJeans and it allows people in a “room” to see and talk to each other using their computer or cell phone camera and microphone. Picture a Brady Bunch style screen layout and you get the idea.
Turns out that people with CF are pretty open about pretty much everything. There is a lot to be learned from others with CF and it is not only comforting to chat with people going through the same thing you are but also refreshing to hear a different perspective. I recommend getting on the mailing list for future conferences. The next one is scheduled for June.
Sign up by going to www.cff.org/virtualeventsYou will be happy you did. Until then, keep on creating those stories. I will see you online.
Mark Levine, 48, lives in Michigan with his wife Joelle and shared dog BamBam. Mark has two step-children, 23 and 21. He is on the board of and the subscription manager for the CF Roundtable.

 

 

 

How One Conversation Led Me to Being More Intentional About My Life

By: Ella Balasa

Would I ever live long enough to fall in love? Would I be able to graduate college? Would I be remembered for making some kind of impact on the world before I was gone? Would I get to travel to destinations where the breaking waves crashed against a rocky shore and the sea mist sprayed as I breathed deeply, and beside me stood …

Gabriella-Balasa-Beach-Featured-Rectangle

I’m startled back to reality. I sit in a hospital bed, surrounded by my parents in chairs on either side of me. I’m on the lumpy foam mattress, where I sit cross legged and my butt sinks at least 4 inches straining my back and adding to the pain the past few weeks — and this conversation — have caused me. My dad sits, lips pursed as normal when he listens intently. We are all listening to my doctor talk about my declining health, about my recent episode of pneumonia, and what my future may hold.

“No one knows the future,” I think, as the doctor speaks. My mind jumps again to that ocean scene, only it isn’t me standing on the shore, I’m now observing the scene from above, as if in spirit. Observing a couple embrace and I feel a strange sense of sadness, anger, and jealousy.

“It’s time to consider a lung transplant.” Those words, uttered from my pediatric CF doctor 6 years ago, made me, in an instant, think about all the joys of life I hadn’t gotten to experience yet.

Why me? That’s the first thought many people have when they can’t accept the reality of what’s happening. We try to answer unanswerable questions.

Later that summer, my parents and I followed doctors’ advice and scheduled a week-long transplant evaluation. A week of what I still consider to be grueling medical tests, even compared to other lung complications I have developed since. In the end, the transplant evaluators concluded I was not quite in the transplant window at the time. That fall, my health started to stabilize. I started my second year of college and I felt myself withdraw from the world.

To continue reading, visit CFF community blog.

Improving Mental Health Within the CF Community

By: Ella Balasa

Having cystic fibrosis makes life sometimes stressful, sometimes lonely, sometimes painful, and oftentimes scary. But it can also make life seem more valuable, brighter, more optimistic, and more fun.

Figuring out how to balance the good and the bad, and come out from tough situations on the positive end can be challenging, especially without support from others. This includes support from family and friends who are physically there for us every day, and support from within the CF community, those who empathize in fighting this disease.

I’ve been very fortunate to have both of these kinds of support. Unfortunately, many who fight CF do it alone, without the support of many family members, friends, or spouses. Many also have yet to connect with the CF community online — either they aren’t on social media platforms or aren’t interested.

According to Cystic Fibrosis Foundation guidelines, CF patients are not to be within 6 feet of each other under any circumstances. They are encouraged to avoid being in the same vicinity at all. This is to prevent cross-infection, the transference of antibiotic-resistant bacteria between patients, which could spread more sickness around the CF population.

While this precaution is in place for our health benefit, it isn’t conducive to real-life friendships among individuals. This can create feelings of isolation, sadness, and the belief that no one understands, and combined with a potential lack of physical support from friends and family, it can be a recipe for serious mental health issues.

Everyone needs physical relationships. We all need someone’s embrace when we’re hurting. In a CF perspective, the hurt can be physical (such as lung pains or fevers) or mental (when we’ve hit a brick wall or the optimism we have that the next day will be better has faded).

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Matter Ep. 23 – How Are You Feeling?

Today’s topic comes from a listener whose boyfriend has cystic fibrosis and she wants Julia and I to discuss the “How are you feeling?” question.

“How are you feeling?” That’s a question we with chronic illness hear quite Continue reading Matter Ep. 23 – How Are You Feeling?

Starting College with CF

By Tabitha Caldwell

My name is Tabitha Caldwell, I am eighteen years old and live in Austin, Texas. This fall, I’ll be moving to Utah to start college at Brigham Young University. I’ll be making many changes and experiencing many things for the first time, just like most ingoing college students. Not living with my parents, buying and making all Continue reading Starting College with CF

OWN IT: Audio Podcast Episode 6 – College Roommates Part 2

This podcast will finish the discussion started last week about a person with CF living alongside roommates in college. You will again meet David O’Kane, Carmen Gatta, Vince Love and Matt Flynn, and hear us talk about the support Continue reading OWN IT: Audio Podcast Episode 6 – College Roommates Part 2

Having CF is the Best Thing that Ever Happened to Me

Having CF is difficult.  There is no denying that.  Some days it is hell, other days it is fairly easy given the circumstances.  But with all the bad that has happened, having CF is the best thing that ever happened to me.

Continue reading Having CF is the Best Thing that Ever Happened to Me

Artist with Cystic Fibrosis Loses Sight But Not Vision in CAN’T SEE SH*T Documentary

http://www.broadwayworld.com/bwwtv/article/Artist-with-Cystic-Fibrosis-Loses-Sight-But-Not-Vision-in-CANT-SEE-SHT-Documentary-20160426#

Detroit, MI — “Can’t See Sh*t” is a local film documentary about artist and singer, Brendan Patrick.
Brendan has Cystic Fibrosis which has slowly been deteriorating his physical body- but not his art, integrity or humanity. The Continue reading Artist with Cystic Fibrosis Loses Sight But Not Vision in CAN’T SEE SH*T Documentary