Relationships with siblings

[Tommy21bn]

Hi All,

I just wondered if people could share their experiences of how IBD affects their relationships with brothers and sisters?

I ask as Crohns has had an entirely negative experience on my relationship with my brother and sister. They don't seem interested in understanding IBD and it's symptoms. Everytime there is a flare I get there impression that they think i'm faking it. I'm not entirely sure as to why they think I would create a conspiracy to sabotage my life that involves the collusion of the medical profession and our parents but never mind.

Does anyone have suggestions as to how I might change their thinking and enlist their support?

 

[Cross-stitch gal]

My sister's so into her own life that she really doesn't pay attention to anyone elses. I'm afraid that the few times she asks about my UC it surprises me.

 

[ronroush7]

My sister has a friend who has Crohns and so she is sympathetic towards me but I don't remember my brother ever saying an awful lot about it.

 

[Scipio]

I'm no psychologist, but perhaps their reluctance to acknowledge the severity of your disease is based on unease over the realization that they, as your blood relatives, are at least some increased risk of contracting it themselves. And thus their unconscious hope is that the disease is "no big deal."

Like I said, I'm no psychologist. I'm just speculating....

 

[my little penguin]

^^^yeah that
As a parent I get to "see" how it affects both the kiddo with ibd and the one without
The one without ibd has had to undergo more testing than the average kiddo since the risk is higher for ibd .
Watching your sibling not be healthy for any reason is very hard even if they don't express it
Because expressing it makes it real
And if it happened to one kid there is nothing stopping it from happening to the other


We have seen this with close relatives for the kids as well
It's just very hard for anyone who is not an adult living with you
To understand or come to grips how bad things really are .

I wish i could say it's limited to Crohns but I have seen it with multiple illness
For Ds
Life-threatening food allergies is one with similar reaction

For kids at least we find common activities they can do to bond over
Getting what ibd means isn't crucial
But having a common bond is

 

[Cat-a-Tonic]

I have one sibling, a younger brother. We're about as different as two people can be and we do not get along very well. He's a difficult person to talk to. He did a lot of drugs and I think it affected his brain in some permanent way or brought out a latent mental illness, something along those lines.

He lived with me for a year and a half. He needed a place to stay and I had a spare bedroom in my home. To thank me for allowing him into my home, he was horrible to me. He said very mean things to me and we fought a lot. Some of the things that he said were about my illness. He listened to a lot of self-help tapes, and I think in his warped mind he misinterpreted their messages. He would tell me things like, if I just have "autonomy and mastery" over my illness, then I wouldn't be sick. Seriously, he actually believed stuff like that.

I was so happy the day he moved out (I tried to kick him out many times but he'd threaten to go live in his car and our mother wouldn't let him, so she'd guilt me into letting him stay a bit longer). Fast forward a few years to today - he's still a loser. I don't think he does drugs anymore, but he's now unemployed and living with our parents. (He is in his 30s so it's not like he's some dumb kid, he's old enough to have some responsibility in life and get a job and get his own place already.)

So yeah, I may be the one with a chronic illness, but I definitely have the better life situation of the two of us. I have a job, a house, and I don't rely on my parents for money. I'm stable and he's not.

I know the initial question was about IBD and sibling relationships - IBD was one part of our fighting, but even without IBD in the equation, I believe my brother and I would still not be close. He's just not someone that I can get along with easily because of his difficult personality and whatever drugs did to his brain. IBD just gave us something else to fight about when he would tell me that I could cure myself if I just wanted it enough or whatever.

 

[my little penguin]

One last thing I noticed is the non ibd kiddo treats the other as if there is no illness
I think it's not from recognizing the illness but from seeing others whisper or treat Ds as if he is sick
No one wants the pity look all the time etc...or to be just the illness not a person
If your siblings that you otherwise get along
Maybe approach them with the subject of I would like to discuss with you what going on with my Crohns --
Some don't want to bring it up so as not to make the sick person feel bad or think they only are Crohns versus a whole person

 

[Beach]

Sorry to hear about the trouble you are experiencing with your siblings. I wish I had good advice to pass along. My experience is that IBD diseases are tough for others to understand. I used to tell myself, if I had a broken arm people could see the injury and problems created for me. With this hidden disease that effects me physically and mentally it's difficult to get support from others, whether family members or health professionals.

There seems to be certain expectations people have of others. As an example, a typical one I've experienced has to do with age. If someone is older than I, and we are doing a difficult physical task I'll often hear how nice it must be for me to be younger. The person will know about my IBD condition, how much fatigue I complain about, and all the health problems it creates, but for a majority of people it is difficult to look and understand beyond typical situations. For a majority of people a younger person is always suppose to do better than older people at physical tasks.

I suspect also news groups and the health care industry with their marketing of disease solutions gives the impression that diseases are history, something of the past. That tends to give others the impression that there are solutions for all diseases. It is someone elses problem to be concerned about.

Anyway, maybe not the best example but good luck at resolving your family situation. I suspect it will be a constant source of frustration over the years. You might show patiences with others.

 

[woops!]

My siblings are somewhat ok. They will ask me how I am doing, but I don't always feel like they really want to know the answer. I think they have a hard time understanding my diet. Some days I can eat a salad, others I know it will send me to the bathroom. This causes some confusion with them
I think a big thing for them is... "you don't look sick, so how are you really sick."
In saying that, I know that if I call them and tell them I need help with something, they are great about helping me out.

 

[Jabee]

I really suspect it has more to do with the difficulty people have with understanding chronic diseases. Often it takes having one to be sympathetic to another person who suffers from (and with) one.

 

[h453]

Coming from the sibling side of things, I agree with others' advice to let your sibling(s) know that you want to talk to them about it, and how they can help you. It might just be that they don't realize you want their support - I realize that probably seems stupid, but with my brother, there've been times when he did and times when he would bite my head off if I mentioned his Crohn's. You may need to be pretty direct about this, though - don't wait for them to ask, just go be like, "Hey this is a super big thing going on in my life and it's scary and I need your support now and may need it more in the future, so can you please learn about it here are some resources." I'm not sure all siblings will react the way you want them to, but it's almost always good to be direct about your feelings and needs. Also, there's a big range of things that IBD can mean, in terms of impact on your life, and they may not really have a sense of how much it's affecting you. I say this knowing it's not really fair to ask you to take responsibility for educating them, but in any relationship, if we have unmet needs, we need to articulate that in order to get things to change.

For myself, I've often wished that it was me and not my brother who was sick. I have made life decisions on the basis of wanting to be able to help him if he needs financial help, a place to live, etc. I worry about him a lot, but I don't tend to ask him about his Crohn's, unless he has chosen to tell me there's something going on, because he doesn't usually want to talk about it and I don't want him to feel like I'm treating him differently because of it.

 

[Becca25]

I don't have crohn's but my sister does and now her disease has brought us closer than ever but when she was in and out of the hospital when she was diagnosed our relationship was strained and we had little understanding for each other.

 

[Pilgrim]

From a parents perspective, I just had a second child diagnosed with Crohn's and he was the one who thought his little sister got away with everything, and felt that she had more attention because of Crohn's. Now he is learning empathy as he goes through it himself. They had MRI done together this month, and travel together for GI appointments.

 

[Bufford]

I have family who lives a considerable distance away and have no clue as to how life is with Crohn's. I book a room at a hotel and they complain that I cannot handle the one hour time change, or why I have to cut the visits short. They are perfectly healthy, but if they get a cold they complain a lot. It does not surprise me, many people do not understand the life of chronic illness.

 

[emmaaaargh]

My brother is a decade older than me, so was a young adult when I was diagnosed with Crohn's. A while back he confessed harbouring some cruel thoughts about how much attention I was getting when I first fell ill - something I had no idea he'd ever felt (since I was so young at the time and honestly thought that any negativity on his part was him just Being A Teenager). I think the turning point was when I went in for my resection surgery. He mostly stayed at home looking after the dogs while my parents came to the hospital, so he didn't see much of me at my absolute weakest post-surgery, but the realisation that this disease was bad enough that it needed an 8-hour surgery to cut out part of my guts must have been a big one.

But in truth, he has been my rock, throughout every trial and tribulation. We don't see much of each other nowadays (he works nights and I am away at university) but I really treasure our times together. I don't know how I'd have survived this long without him!