Here’s a cool series for Valentine’s Week! Each day I’ll post a new blog written by the significant other of a person with CF. We’re also going to run 3 episodes of Breathe In – Today, Wednesday and Friday – each will feature Lea’s boyfriend, Tiffany’s boyfriend and my girlfriend respectively.
I wanted to explore what it’s like to be with someone who has CF.
Our first written blog comes from my girlfriend, Darcy – we have been dating for about two and a half years. I hope you enjoy!
- How did you guys meet?
We met through a mutual friend – Gunnar’s high school friend was a college roommate of mine.
- What is your favorite activity to do together?
Gunnar and I both grew up playing hockey, so we really enjoy skating together. It’s been cold enough this winter that we’ve gotten to play pond hockey quite a few times.
- What is something funny about your S.O. that other people might not know?
Gunnar loves penguins like Jessica Alba in that obscure Dane Cook movie. He has penguin art, penguin cufflinks, and penguin bed sheets.
- What is one of your S.O.’s quirks?
Can you imagine what a “guffaw” is supposed to sound like? Gunnar makes that sound. It’s kind of like an abrupt yodel in the place of a typical laugh.
- What do you like best about your S.O.?
One of the things I like best about Gunnar is his ability to make me laugh. Gunnar is always talking in different accents, sending me funny videos, and offering blunt commentary on the world around us. He brings me to tears with laughter almost every time we are together.
- What did you know about CF before meeting your significant other?
I knew CF meant mucus in the lungs but that was the extent of my knowledge.
- Did you know that your S.O. had CF before you started dating? How and when did you find out your SO had CF? What were your initial thoughts?
Gunnar had a picc line in on our first date, so he actually told me about his CF the day before via text. If I remember correctly, he told me the basics and how the picc line works. On the second date (two days after the first) he pulled his favorite trick and had me push the saline down the syringe then groaned ‘ARGHHHH TOO FAST!’ so I PANICKED that I had hurt him (obviously not). We were always comfortable talking CF from the beginning.
- What did you do to learn about the disease? Did your S.O. play an active role in that?
At the very beginning, I was committed to learning about Gunnar’s CF from Gunnar. I avoided Wikipedia like he told me to. Later, I went through and read his blogs, followed by other CF patient’s blogs. Since then, I have become friends with other CF patients who teach me a lot.
8a. Do you ask your S.O. a lot of questions about CF?
I ask Gunnar a zillion questions about CF. It has gotten to the point where I ask questions that he doesn’t know the answer to and he has to ask his doctor and get back to me. Not once has Gunnar made me feel dumb for asking any question even though I’m sure I’ve asked some less-than-intellectual questions. I give props to Gunnar for always giving me the space to ask questions. It has always been important for me to educate myself on cystic fibrosis as best as I can. Knowledge is power!
- Do you talk about CF?
We talk about CF a lot, but I think that’s more because Gunnar’s livelihood is advocacy than for any other reason.
- What was it like the first time you saw your SO do treatments and how long was it until you got to that point?
I think I saw Gunnar do treatments about 3 weeks in to dating. I asked a lot of questions! I don’t think it was that monumental for me to see Gun do treatments, but I remember after my parents saw him do treatments for the first time they commented that they gained a great respect for how much time and energy he has to give to take care of himself.
- How do you support your SO in their battle with CF (ex. Reminding him/her to take pills, wash neb cups, do IV infusions, go to clinic appointments, etc.)
Gunnar is extremely disciplined and self-sufficient when it comes to his CF care. I would never even have the opportunity to “remind him” to do something because his care routine is a well-oiled machine. With that being said, I think one of the hardest things about loving someone with a chronic illness is seeing them in pain and feeling useless. One of the best ways to mitigate that feeling of uselessness is to help! I sanitize neb-cups and help with IVs, but my niche is nutrition. I make blends for Gunnar’s feeding tube and I am forever doing research to come up with a formula that is the perfect ratio of fat:protein:sugar:calories:digestibility:bulk:anti-inflammatory:immune-boosting goodness.
- What’s the craziest thing you’ve had to do that is CF related?
I like to taste the shakes I make for Gunnar before I give them to him, because even though it goes straight to his stomach, I would never give someone something I cooked without a taste test! So I have drunk plenty of crazy/gross witch’s brews made of combos of things like beets, ginger, peanut butter, quinoa, cayenne, cinnamon, bone broth, oat milk, etc.
- How do you think CF has shaped your S.O. into the person they are today?
CF demands a lot from of a person. I think a side effect of that is that Gunnar demands a lot from himself. He has high expectations for his own character and sticks to his Guns (get it!?). Gunnar values honesty, discipline, and strength, and CF has made him unwavering in these virtues. He does not compromise on integrity in himself and in those in his circle.
- Does your S.O.’s health change the way you look at your own health?
I have always been grateful for my health. I think the main change in my perspective is about colds and the flu. I used to be one of those “hand sanitizer causes super bugs” people, but you bet I carry surgical grade hand sanitizer wherever I go now. I also keep chlorhexidine in my shower for when I feel too many people were sneezing around me that day. Me being sick = risk of Gunnar getting sick, so I am committed to keeping myself as healthy as possible.
- Did you ever second guess the relationship because of your partner’s CF?
Never. But that does not mean I’m anxiety-proof. I’ve had days where I’ve felt nervous about Gunnar having a pulmonary exacerbation or anxious about possible issues in our future – and that’s ok! I’d be a robot if I didn’t worry about CF stuff sometimes. Generally, I don’t harp on such anxieties because that isn’t going to help either of us, but at the same time, it is very important to be able to take your fears and bring them out in the light. When I think or talk about those fears, it just reminds me that I love Gunnar 1000 times more than I’m afraid of CF.
- What has been the hardest thing to get used to (ex. Treatment time, GI issues, spit cups, etc.)
Watching IVs go in. The mucus, feeding tube, and meds don’t phase me a bit. I have celiac disease among other fun GI issues, so Gun and I are pretty open about those kinds of things, too. However, I used to be needle-phobic. I would faint during almost every blood test I got. Having watched Gun get many IVs over the last couple years, I might as well be the one to place them now… Exposure therapy, I suppose? Syringe shmaringe!
- Has CF impacted spending time together (ex. Last minute canceled plans, illness related issues, not going “out” as much as peers)?
Yes. Canceled plans, one of us being sick, and not going out like our peers do are typical parts of our lives. While I don’t think there’s one “kind” of person who is better suited to date someone with a chronic illness, I do think that someone who has an extremely active social life who likes late nights out would be a tough fit. I’m sure there are people like that who make it work though!
- What do friends and family say to you about being with someone with a significant illness?
Initially, I had friends and family who were concerned for my wellbeing. I don’t think any of them wanted me to experience extra pain and I think they all were consumed with life expectancy stats. All of those people stopped expressing concern once they met Gunnar and saw him as a person who makes me happy, not just his illness. To this day, though, I get well-intentioned but offensive comments (mostly from acquaintances) along the lines of “good for you, I could never date someone who’s sick.” I think you’d be JUST FINE dating my HOT AWESOME boyfriend thank you very much.
- What do you and your SO do when YOU are sick, and how is that impacted by CF?
This is one of the harder things. It’s tough being sick and not being able to lean on your significant other as much. Two summers ago, I got a MRSA infection a week after having abdominal surgery, and Gunnar and I had to stay apart for about a month before an infectious disease specialist confirmed I was clear of the infection. It was tough emotionally, but we got through it. One “perk” that I’d be remiss to leave out is that I totally utilize Gunnar’s extensive medical knowledge. Given all he’s been through, he knows quite a lot about quite a lot. I accidentally take two doses of an antibiotics? ‘Heyyyy Dr. Gunnar…?’ I can’t shake dehydration? ‘Dr. Gun can you please help me with something?’ Gunnar definitely finds ways to help me out even from a distance.
- CF and family planning – how does this impact your relationship?
Most couples probably don’t talk about family planning as early on as we have had to. Even though family planning is something off in the future for us, infertility is one of the most difficult things associated with cf. I strongly believe that you need to be communicative with your partner about tough stuff so you can face it as a team. This isn’t something we talk about often, but we know we’re on the same page about it.
- How do you cope with the progressive nature of CF?
I am interpreting this question as a question about life expectancy. At the end of the day, it’s not the treatments and the pills and the feeding tube that scare people who love someone who is sick. It is the fear that you will one day lose the love of your life before you’ve had enough time to show them what it even means to be the love of your life. Truthfully, I hardly ever think about life expectancy or disease progression. I’m not going to let myself suffer with anxiety about something that isn’t actually happening to me right now. But when those fears do rear their ugly head, I remind myself of this: If Gunnar has taught me anything, it’s that one can be in pain every single day, yet still live a beautiful, fulfilling, happy life. No matter what adversity or pain or loss happens in our future, Gunnar has taught me, through example, how to be strong enough to find my way. I owe it to him to live up to that.
- What about the financial burden of the disease?
CF care is so damn expensive!! Again, this is something that will be a more prevalent obstacle in our future, but Gunnar and I both love our careers. We communicate about our current finances, expenses, and future goals so that we feel prepared for our financial future.
- Do you think CF has forced your relationship to be stronger?
I do think CF has strengthened our relationship in certain ways. When you’re forced to talk about really tough topics early on, you build a trust and intimacy that you wouldn’t build otherwise. CF has also ingrained a lot of perspective in us – there’s no room to argue about little things when the big picture is always smack in front of our faces. The only time I can remember us fighting was when Gunnar thought that “toddler” was a catch-all term for any baby age 0-3, including newborns. His argument was so egregious that I couldn’t help myself but contend with him (and yes, he continued to argue that he was right until we pulled out the textbook of American Pediatrics).
- What are some funnier things that have happened that could only happen in a relationship with CF?
Let’s just say that when a terminal illness is involved, the dark humor gets way funnier.
- What is your favorite thing about Gunnar as a boyfriend?
Gunnar is an extremely dependable and thoughtful person. With Gun being “the sick one,” people might assume that I’m the steady one in our relationship. The truth is, Gunnar is my rock. He always, without fail, answers my calls when I have a bad day and need to talk. He gives me honest advice and a push when I need it. He sends me books he thinks I’d like and knows when my favorite bands are in town before I do. He’s more paranoid about the possibility of gluten in my food than I am. And the thing is, he is this person for so many people – not just me. Gunnar gives so much time and energy to fighting his CF that I don’t know how he is STILL able to give so much of himself to me, his family, his friends, his players, and his community. He’s superhuman, in my opinion, and I couldn’t be more in love with him or more proud to be his girlfriend.