How to act around my Girlfriend with CF

[BSJ1993]

I am a man who does not suffer from CF. In a new-ish relationship with a CF suffer. Would love advice, how to act, how to be etc? It would be great. Here is my story.


Long story short, my girlfriend of nearly a year has Cystic Fibrosis. Since day one I have absolutely fully embraced it, reassured her and been with her the whole time. Not once have I ever doubted my support for her and I will literally do anything to assist her. I would like to think she knows this but there has always naturally and understandably been a barrier there, i think anyone would have that.
(it took a long while for her to let me come to hospital with her)

One of my problems is, I feel like I try so hard to be a part of this, CF is a part of her life and because of that I want to be involved in it as well... but I still feel there is a reluctance from her to let me being involved? Even though all i have ever done is been with her by her side since day one of knowing she has CF. Does any CF suffers have similar experiences or could give me some insight?


The reason for writing in this forum is... I would say I am now going through my first real challenge with CF. For the first time she is now in hospital for 2 weeks which could easily increase, from this, numerous events have been cancelled etc etc. I am absolutely gutted for her, so upset and obviously I am new to this. How do i react?

I am very conscious that I am being negative or down when i see her in hospital, she has hinted that I am but in truth I don't know how to react? What do i do? Is going to see her lots and trying to do everything for her not what she wants?

All i want to know is, how does a bf act and behave when his GF is stuck in a hospital bed for 2 weeks. D

 

[kenna2]

To help us understand where she is in her life and battle with CF, could you please give us your ages? Acceptance and maturity have a lot to do with CF and would help us figure out where that is and what mind frame she might be in. That way we can help you respond appropriately.

 

[heychelsey@gmail.com]

I am a 23 year old woman with CF. My now husband and I have been together for 4 years and he has been nothing but supportive, but I know that he went through something pretty similar the first time he saw me in the hospital. He was heartbroken for me and didn't know what to say or do because for me it was just another aspect of my life, that I was perfectly used to and for him, he was seeing someone he loved being poked and prodded and in pain. He didn't let me see that he was sad for me and scared though. Well he did a little but it wasn't all he did. Mostly what I wanted from him was his normal self. I didn't want to be looked at or spoken to like things were drastically changed because I was in a hospital bed. I didn't want being in the hospital to change the dynamic of our relationship. I wanted to be able to talk and laugh and read and watch shows together like we would have at home. He also helped at lot by making me go on short walks with him around the hospital. I think that helped for him to satiate his need to get the hell out of my room (which can be a little suffocating when you're nervous) and the exercise was good for me too and also took my mind off of being stuck there.

I hope some of this helps! CF is a horrible thing to live with but it doesn't need to make life sad and dreary all the time, even at hospital stays. Help her remember that! Good luck to you both!

Chelsey

 

[kenna2]

I will say this. I'm 32 so I've been through a lot of hospital stays. The last thing we want to be reminded of is that we're stuck in the hospital and we're missing things. It sucks, but bringing up the things that we're missing out on or that we're sick just adds more salt to the wound. For many of us, a trip to the hospital for a "tune up" is so routine that's it's not a big deal as you may think. To me, it's a relief because I'm finally going to get the rest I need and get my cough back to where I feel in control of it. My boyfriend was introduced into the CF world about a year and a half ago and wasn't sure what to expect or how to act either. He was really surprised by a lot of it. The important thing you have to do is keep things positive. Yes there will be times when you will see her cry and break down from the struggles of CF and it will be heartbreaking. But the last thing we want is for you to pity us and treat us like we're weak. We're some of the strongest people you will ever meet. Treat us normally because that's what we want more than anything, is to feel and be treated like normal people. You can offer to help her if you think she might need help with some things, but don't be surprised if you get turned down. Our main goal as someone with CF is to maintain our independence as long as we can. It's almost a self reassurance thing for us that we're doing better than we think we are.

The main thing you can do is keep her mind off the negative and on positive things. We need our support people to be positive for us when we can't, but also listen to us when we have our low and depressed moments. I've always made it a point to plan something fun to do after I get out of the hospital to reward myself for 2 weeks of shit that I went through. My boyfriend now helps in the planning of these things and keeps my focus on the good things that we're going to do when I'm out. Having something to look forward to always helps. It could be a trip to a really good restaurant she enjoys, a place she likes to shop, or a movie you want to see, or a small getaway. When I'm admitted into the hospital, my boyfriend will come visit me when he can and he'll bring me dinner. Bring her food when you visit, there is nothing better than eating something else other than hospital food. If you can't visit, offer to Skype with her to keep her company. Since a lot of hospitals don't have a lot of channels, something my bf and I do is he'll rent a movie or we'll watch a show together via Skype. My bf will set up the camera on his computer to face the tv screen at his house so I can watch it on his tv screen via my computer. If she's allowed to leave her room (some CF patients can't leave their room due to the risk of cross infections) go for a walk around the hospital or the hospital grounds if allowed. If you guys have something that you normally do during the week that can be done while she's in the hospital, continue doing that. For example, during football season, my boyfriend will come up on Sunday's so we can watch football together like we normally do.

Also ask her questions and continue to learn about how she deals with her CF and her preferences. Also please understand that as someone with CF we've gone through some sort of rejection or abandonment from people because we have CF. As a result we will always have a wall up until we feel comfortable letting people in our inner circle. That acceptance takes time and maturity. Good luck to you both!

 

[Jeana Lynn]

I, too, am curious about your ages. My husband and I have been together for about 23 years. We are at way different places now at 41 and 42 than we were at 18 and 19. Honestly, my husband had a really difficult time when I first began being hospitalized. He almost left me because he thought I was dying and he couldn't handle it. I don't know what previous relationships your girlfriend has had and how they've reacted to CF, but she could be worried based on their reactions. I know CF is scary and we are not promised forever, but 20 years from now you could be looking back and wondering how you ever could think a hospitalization was so bad. In those 20 years of hospitalizations, things are much different for my husband. For one thing, he knows that a hospitalization is kind of like a tuneup. I will gradually become sicker and then get a tuneup and be well until I need another tuneup. Our two kids understand that as well. They have been around through many hospitalizations and are not scared when I go in. I'm not discounting the fact that sometimes we are really sick, when we go into the hospital. But thinking of them as tuneups helps both my husband and my sons.

Also, us CFers want to be seen as normal. Yes, we take a little more maintenance, but we want the same things other people want in life. It really helps me when my husband talks like I will be around forever with him. And who knows, there are so many new treatments and drugs coming out for cystic fibrosis right now. Even though we realize the future is unknown, it is it not helpful to dwell on negative possibilities. Possibly, he'll get run over by a car tomorrow. You just don't know. So, it helps the most when we just act like everything is all right. At some point in our relationship, it went from me against CF to a partnership with him and I against CF. If my FEV1 raises a couple of percents, he text me a thumbs up or fireworks. If I get too tired walking around the store, he picks me up and puts me on a shoulders. If I'm restless in the hospital, he has snuck me out to the movies. (Not that I'm recommending sneaking out of the hospital). He brings me little things that I will like when I am in the hospital like jerky and a soft cozy blanket and my favorite drinks. He brings cards so we can play games to relieve the boredom. He talks about what's going on at home. He acts like being in the hospital is just a little speedbump in the road. And it is. He recognizes that I may need a little extra help with things and just does them without making a big deal about it. And we keep dreaming of the future together.

I'm not sure exactly how we got here, but we did. It is a work in progress. Sometimes your girlfriend will want to talk about cystic fibrosis and sometimes she will just want to talk about normal life. She probably doesn't want to have to come comfort and reassure somebody else at the times where she has barely enough energy to reassure herself. Sometime she may get really depressed and just need someone to lift her up and encourage her and soothe her fears Anyway, if you ever have any questions I will try my best to answer them. Hope this helps you in some way.

 

[Printer]

BSJ:

CF is a very different disease. It requires 2 mutations, one from each parent. There are almost 2000 known mutations. This means that there are almost 4,000,000 "versions" of CF. As a result, Doctors treat the symptoms, not the disease. I would suggest that you do the same. Don't compare your GF to anyone else with CF or with anything that you may read. She will have really good days when she will feel "athletic", swimming, hiking etc. She will have bad days when watching TV may not be comfortable. She may not want you to see her have a coughing & spitting jag, eventually she will let you into this world as well. Watch, listen to her and act accordingly

In my case, I go in for a tune-up twice a year (so far), over time that could increase. If you feel that you are "being negative" keep your visits short or leave for ten minutes then go back. Visit but don't think that you need to entertain her. She is there for a tune up, not for major surgery. Count the days until she will be out and feeling good again.

Write here again. A lot of people here want to help you. We have a great mix of CF patients and family members.

 

[Sam]

BSJ1993 -
As a dude, it is hard to handle a GF with CF - we want to "fix" things, and when we can't fix it, we can so easily end up saying/doing the wrong thing. Your role is simple on the outside, tough to do on the inside: just be there for her. Don't get sucked into her crappy mood. Don't dismiss it, though, either - that'll make it sound like you don't understand/care what she's going through. Communicate like you normally do. My wife and I crack each other up all day long - it's no different in the hospital, and there is plenty of stuff to laugh at in there, believe me. Don't get that freaked out look on your face when you see more than you want/needed to. Suck it up, let her see you take it all in stride. This hospital stay is a big deal - if you can get through this without losing your head, she will likely let you more into that inner-CF life of hers that you've had a hard time cracking. It's worth it. Hang in there. Don't be afraid to ask her what she needs of you. We CFers get so used to being our own rock - if you can be that for her, it's huge.

And don't drop the ball on the boards, either - let us know how it's working out. This is your place to vent on the side so you don't bust in front of her.

Best of luck, man.

-Sam

 

[Kangaroo15]

Hi, I have "atypical" c.f that is I'm treated for c.f , my body acts like c.f but my sweat test was in the normal range.
Having said that I've been in and out of hospital on I.vs loads of times.
As others have said depending on your g.f hospital policy they may let her walk around with a mask on or not. If so, take some walks together if she's allowed,
Pack some movies and popcorn; her favourite foods even if savory ; some hospitals give c.f patients coupons for food in the hospital cafeteria so check that out; maybe make a little basket of all her favourite things like a magazine, some candy, nail polish or things she loves to spoil her a little . If your comfortable with it, some hospitals allow partners to sleep there in the same room. So ask about that. Finally order some food in from take out that she likes ! Some hospital food isn't the best. Most of all just be there for her. When she's tired let her sleep, when she needs washing done do it, and just stand by her so she can see how much you care for her.
Lets know how it goes keep us up to date.
Sonia

 

[LittleLab4CF]

BSJ1993,

Not to yank your chain, but the two of you are also new to a long term commitment, in relative terms. This in itself is a major challenge when there's no real problems in health and financial security. Most couples have a full time job working through the distribution of responsibility, decisions and sometimes it involves a kind of power struggle. It's likely that her parents are still involved in her care, something that she has been taking over for several years. This was a power struggle to some degree. Usually parents and progeny don't have a major challenge in delegating responsibilities for health management but you can assume that you are reminding her of her hard won medical independence and may be resisting your intrusion into her health management.

Her CF and your combined care of her CF has to be worked out. There's no rush, she's been managing it her whole life. This means that she knows her meds, doctors, Hospital, blood draws and stuff I hope you haven't needed to be familiar with. If she seems to be pushing you away from the mechanics of her CF care, imagine yourself in her position. You have a condition that you can't explain adequately explain anymore than you can explain what it's like to be a guy. It's who you are. Generally speaking if you mention CF, the person who just learned that you have it has no idea what CF is nor what it means potentially.

I've been watching the dynamics of relationships since my best friend at 10 was a girl. Being sick, feeling pain and nausea and frankly being tethered to a bed isn't an image anyone wants to project. It doesn't matter if it's a 10 year old, 22 or 67, feeling puny in the hospital, expected to be in bed is a less than desirable experience to share with whomever knows your room number.

As for your dedication and support and the desire to impress her that you are not going anywhere, visit with her while she's in the hospital. If she's miserable and just needs to get over being sick, don't make small talk. In fact don't make anything except for a seat near her. Read the paper, watch TV, play Boggle or something that you can easily do with one person in bed.

If you're so transparent that your discouragement shows through, you need to have a distraction like a game. Don't go overboard with Wi or such. Checkers is fun. If you are going to be gone for the day, maybe pattern coloring books, definitely not for children. If you want to have a riot, invest in some Nerf guns, a couple each and have a ball.

Supporting someone who is sick is relative to how serious it is. Nothing I've mentioned would be appropriate for the transplant process but she is in the hospital to get better and get out. It's your job to put some thought into how you want to influence her. Happy with laughter is your goal.

LL

 

[calebf]

Frankly it sounds like this hospitalization is more painful for you than for her. For her it's normal. For you, you're realizing that the person you care a ton about and see a future with has a very serious illness. Perhaps more serious than you initially realized. Seeing her in the hospital for an extended period may be making CF a reality in a way it likely wasn't before. This happens a lot. As a CFer, people I befriend see me a little differently after a hospitalization. I can tell people the facts about my CF, but I look normal on the outside. The seriousness of this disease doesn't hit home until they see me in a hospital bed tied to an IV pole. It's more serious than it often looks on the surface and a hospitalization has a way of really painting that picture. You sound like you feel disconnected from her cause it's a monster in your head and it's not that big of deal to her. On top of that, you're a guy. You want to fix things to demonstrate your ability to love and protect her. Very natural.

My advice to you is to STOP and CALM DOWN. It's a genetic disease she has dealt with her entire life. Unless you're holding out on us and secretly have a cure none of us are aware of, you can't fix it and she doesn't really need your help. She's alive today cause she's good at managing CF. She's with you because she likes you, not cause she needs your assistance. Show your support by telling her what you love about her. Make her laugh. Make her smile. Make her adore you for loving her at her worst. Hospitals are boring and lonely. Think up fun ways to help her pass the time. Do stupid little things like help her name her IV pole or make impressions of the weird doctors that parade into her room. Smile, laugh, and just be with her. CF is normal to her. Being hospitalized is normal to her. It's not normal to you. If you accept it then she will feel like you accept her. She doesn't want you to fix it, she doesn't need you to fight it for her, she probably doesn't even want you to be that greatly concerned about it. Her mom likely has that covered 5x over. In fact your great concern may very well remind her of her mom. Not a good look on a boyfriend. You want to be the fun, exciting, amazing part of her life that she thinks about when shit is hitting the fan. She wants you to accept her CF, be comfortable with it, and enjoy the life with you that she has fought so hard to have. Once you've shown you're comfortable with her CF and she feels accepted she will likely ask you for help with little things when she needs it. By calmly and happily standing by her at her worst you will win her heart.

Last thing. Let's not forget about your needs. If this is going to work for the long term her needs and your needs must be met. One of the terrible effects of CF is that the disease can eclipse the needs of the CF person's loved ones. Your needs matter as much as hers. When the timing is right don't be afraid of calmly and lovingly expressing how you feel about her disease and about how it affects the relationship. This is big life stuff that people don't like to talk about. It can be heavy and thorny. It needs to be touched on but not belabored or dwelled on. If it's going to work long term you'll both need figure out how to have that conversation. Until then, focus on putting a smile on her face and laughing together. That's the stuff that pulls relationships through the hard times.

 

[BSJ1993]

Hey guys,

thanks for all your responses, they've been amazingly helpful. When i wrote that post I did have a pretty shit day and it may of come accross i was panicking... I just want to say one thing, never have I ever doubted my relationship and I will never let CF affect it, it may have came accross i was ready to call it a day... 100% that was not the case... I just really wanted to know from a point of view that I will never be able to imagine... yours. the first time it can be pretty confusing. I kinda did forget you know she has been tackling this herself independently for a long time before me, all of a sudden she doesn't need another person worrying about her, but the natural human instinct for someone you do care about is to try and help them

She is 22 and I am 24 for those that asked.

After writing and reading these posts she has got a lot better and is actually out this week! i have also been a lot better, focused on making her laugh and making sure my visits are just like they are at home, fun laid back and just enjoying each others company

You seriously have been a great voice to speak to all of you and I have changed my approach majorly.

All i really wanted her to know is you know this shit is not going to scare me off and I hope she knows that after these last 3 weeks.

I will keep in touch

thank you all and will keep replying to your posts if you have any questions