My boyfriend has Crohn's

[chrissyb]

we met early this year and he told me about his condition straight away. i'm pursuing a career in health/medicine, so when he told me about it, i became even more fascinated to educate myself on it. i wanted to become more knowledgeable so i could support him. but the more i read about it, the more i felt helpless. not because it's hopeless, but because the means to treatment are still limited. it's such a common disease, but it's not understood well enough yet; many treatments/medications and ways to manage CD are met with varying results person to person.

for the most part, i think we're a normal couple that loves to be in each other's company, do things together, and be there for each other - and Crohn's is just another hurdle we face together. but when times are rough because of CD, it hits me that this is new territory for me. when someone i care about has the flu, a stomach virus, or anything that passes and goes with fluids, rest, and maybe some medication, i know what to do. but CD is different, it's like i don't know which way is up or down, left or right. i've read about it, but like i said, there seems to be so much variability in what works and doesn't work and it would crush me if what i suggest backfires.

since we've met, he's had several flares, but never when i'm around because it's usually when i leave for work in the morning. i am around, though, when he has what leads up to the flares - body aches, feeling backed up, sluggishness, etc. he's fun-loving, caring, funny, and just absolutely amazing, but when he's not feeling well, it crushes me to see his spirits down - he constantly apologizes for 'complaining' or not being healthier/better and reassures me that he's going to make changes like exercising more to help him get there. i tell him that i'm his girlfriend and he shouldn't apologize to me about his health and i all i want to do is be there for him. but maybe i'm not getting through to him effectively or supporting him right if he still feels the need to apologize.

i know this a longwinded message, but it actually felt good to write down. when he tells me he's hurting physically and speculates what it could be (his ideas usually go for the worst, but i can't blame him), i tell him to relax, take it easy, and consult his gastroenterologist, someone more qualified than either of us. it feels terrible to say that to him because it sounds 'dismissive' and i wish i could do more, but i really don't want him to stress out even more or give him wrong information. what makes it tricky though is that while he has many concerns about Crohn's, especially because of the complications that can arise, he doesn't hold a warm regard for doctors or even the hospital due to bad experiences. i feel like i'm still learning to find the balance in coming off as too overbearing or dismissive and being supportive but still being his rock. so to anyone affected with CD in any way, how can i be a better girlfriend to a partner with Crohn's?

 

[teeny5]

I am not really sure how to answer your question.

Maybe because of his bad experiences with drs you could tell him you want to help be there for him like an advocate. Maybe he would like if you went with him to the visit, not necessarily into the exam room if he is uncomfortable about that, but there as moral support. My husband doesn't usually go with me, but we discuss the visit after...makes me feel better to review everything the Dr told me with someone.

It's hard to get someone to stop apologizing if they feel like they are a burden or inconvenience to you. Maybe plan some time together when he is feeling ill to just lounge and watch movies. If you planned it, maybe he won't feel like he's bringing you down. You can still have a fun evening in.

Does he know about this forum? This forum has helped me a lot. Even if he doesn't want to share his story there is a lot he could read. It helps to know others feel the same way you do and informative to hear about their experiences.

I like it when my husband helps research stuff online...like supplements and easy exercises I can do even when I don't feel good. He knows when I don't feel good to just make me something for dinner (otherwise I won't want to eat), and gets a pillow and fluffy blanket for me to rest on the couch. He helps by making me laugh when I feel down. Sometimes we joke about the ridiculousness of the disease...makes me feel better sometimes.

You might have to ask him what he would like from you...he might not know what to say at first. You sound very supportive. We all go through phases of frustration, anger, hope, and peace with the disease so his needs may change.

Anyway...I hope some of this makes sense. All I can tell you is what seems good from my perspective or experience.

 

[chrissyb]

teeny5,

thank you so much for the message. i know my post was a little all over the place - my thoughts on what i was feeling and what i wanted to seek advice about were still scrambled. but your response was excellent and just what i needed to hear.

being new to dating someone with a chronic disease like Crohn's, i'm still figuring out in what ways i could be helpful and supportive. your advice on having me plan a fun night to lounge and watch movies when he's not feeling well really struck me. i feel like my boyfriend does think that he's holding me back when he's ill and we don't go out, and i think having me suggest that we just stay in would allow him to see that i'm not burdened and simply enjoy being together. furthermore, yes, he's very active in the Crohn's community and is a member of many forums and groups alike (wouldn't be surprised if he saw this :blush: !)

again, thank you for sharing what works with you and your husband. it has really shown me how the little things can truly matter. i know relationships aren't identical, but it's provided me with a good place to start - a better approach.

best wishes!

 

[teeny5]

You can always message me if you want to chat about it. I usually check in the forum daily.

 

[dj_tano]

The only thing you need to do to be a good partner to someone with crohn's, in my opinion, is to be patient with your partner. The worst thing you can do to your partner is to be impatient, as it will affect him/her in a very negative way which can make their time even more miserable than it needs to be.

 

[scottsma]

chrissyB, I just wanted to say that you're doing fine.
You care enough to come on the forum for help and advice,you care enough to try to understand this dratted disease,and you care because you feel you are failing in some way.
Take it from me,he's very lucky to have you.Enjoy the good times,and tolerate the problems and flares. Best wishes to you both.

 

[errmagerd]

First of all, thank you for being so supportive of someone you love with Crohn's! I think that in itself is the most important thing.

My boyfriend has no medical training or anything, he's an engineer. His father has Crohn's so he already knows a little about it, but every case is so different that my case can't compare to his father's. But when I was recently diagnosed he has been so amazing and understanding and supportive and THAT is what made all this go more smoothly and kept me from freaking out.

You sound like you're doing wonderfully, and remember that just because you're in the medical field doesn't mean its your job to treat him. My boyfriend's job is to support and help me, and thats what makes the difference.

Hope this made sense and helps you out!

 

[fuzzy butterfly]

Hi Chrissyb, sounds to me you have pretty much got it covered , just being loving, supporting and understanding are all we really need from our partners,family and friends. plenty of hugs and cuddles go a long way to helping us feel better..:ghug:

 

[fuzzy butterfly]

ps best wishes to you both x