So, guys, what's supportive anyway?

[susie]

so, guys, what's supportive anyway?

I've been reading about the ugly, cruel things some of you guys have had to listen to from friends, acquaintances, relatives. Some are mean, others are probably just ill-advised, or stupid attempts at defense mechanisms, well, who knows.
Anyway, that whole thread [# 15310, too newbie to link, sorry] leaves me wondering, what kinds of things have people done and said that had really made you feel cared for and supported? Where is the line between being interested and been nosy, specially from friends? Do you hate to be asked "how are you?" all the time? Being reminded that yeah, you´re sick, thanks, now that you had finally managed to be thinking about something else...
Or how about if you answer "I'm exhausted" and then the other people tries to lighten it up with some comment about you working too much or something... Maybe they shouldn´t have asked in the first place?
Human interactions aren´t easy, illness doesn´t help either, I guess.
Any advise/comment/story will be appreciated. You all rock.

 

[Dexky]

Ha Susie, I guess mine is probably not the perspective you were really looking for. As the parent of a young crohnie, I can see that there is certainly a possibility of being too supportive. As far as my son is concerned, in his mind he's pretty much been cured since pred beat down the crohns nearly 1.5 yrs ago now. He gets exasperated when I ask how he feels or anything about his bathroom habits etc.. If not for meds and doctor appts. and our constant questions and concerns, I'm sure he would have forgotten about crohns a long time ago! I wish I could!!

 

[Cat-a-Tonic]

I'm undiagnosed but probably have some form of IBD. It's been challenging to say the least to be undiagnosed and to try to deal with these symptoms without knowing exactly what I'm dealing with. My husband started off being not very supportive - at first, I don't think he fully understood what I was going through. I kept a lot of it bottled up and didn't tell him how bad it really was, because I didn't want him to be too worried. But because I didn't tell him a lot of the details, he assumed I was being overdramatic when things were really bad. We had a long talk one night and after that he started to understand more.

The real turning point has come more recently, though. He started having abdominal pains of his own which turned out to be kidney stones. I told him that when he's in pain, I can't stand to see him like that and not be able to do anything. Suddenly now we both see both sides of things, as we've each both been the person in awful pain and the person who is helpless to do anything for the partner who is in pain. I really felt like, now that he's experienced similar awfulness, he can better understand what I go through. And I understand his point of view too - he is helpless to do anything besides bring me gatorade and a bucket and hold my hand. It's been a real learning process for both of us, and it's been pretty awful at times, but I think we've both emerged stronger and wiser and are able to be much more supportive of each other now.

 

[Entchen]

If not for meds and doctor appts. and our constant questions and concerns, I'm sure he would have forgotten about crohns a long time ago! I wish I could!!

+1 Mark

To be very honest, whether a friend or acquaintance asks how I am doing or doesn't ask, whether they are maybe clumsy in their efforts or even seem just a tad nosy, I choose to interpret their behaviour as a sign that they love me and are trying. They tell me I'm beautiful now even though I'm fat from Crohn's and treatment, they cheer on my efforts at the Y to be in "fighting form" to tackle Crohn's, maybe they're frustrated that I'm not better yet (1.5 years after major symptoms started), maybe they just don't want to hear about it -- I want to respect their position on how we negotiate our friendship now every bit as much as I want them to respect my position.

 

[susie]

how much support is too much, exactly

Yep, Mark, that. Not the same situation, of course, but I'd hate to become an additional source of exasperation.
Focus on the person, not the disease? Make sure the Chronie knows you acknowledge that the pain is real even though one can take the lead and go along with the game of treating it like the elephant in the room?

But there is this feeling that if I were him I would do things differently: try gluten-free and home-made yogurt, write the damn food journal, go do yoga, take some time off, go find out about the pill-cam, figure out exactly how much of a chance there is to get into the anti-TNF protocols... Argh.

 

[ameslouise]

Hi Susie - You are right, for many there is a fine line between support and "get off my back" !!!

You can suggest and you can support, but you can't make someone else seek treatment or approach things differently any more than you can make someone quit smoking or drinking. Ultimately, it is their decision and their body.

For me, people ask and question and that's fine. I take it as a sign of caring. I don't mind talking about it as it raises awareness and makes IBD less of a stigma. But others are more private. We're all different!

- Amy

 

[Misty-Eyed]

Ha Susie, I guess mine is probably not the perspective you were really looking for. As the parent of a young crohnie, I can see that there is certainly a possibility of being too supportive. As far as my son is concerned, in his mind he's pretty much been cured since pred beat down the crohns nearly 1.5 yrs ago now. He gets exasperated when I ask how he feels or anything about his bathroom habits etc.. If not for meds and doctor appts. and our constant questions and concerns, I'm sure he would have forgotten about crohns a long time ago! I wish I could!!

That's so true. My parents have always been very supportive and always want the best of me. But after 18 years of having crohns and going through HORRENDOUS times with them, I feel really uncomfortable getting upset about my crohn's infront of them or talking about it.

Saying that, I was really appreciative of my mum staying up till 4am with me when I was in immense pain with a near obstruction the other month.

 

[Jennifer]

Caring to me is taking care of someone when in need be it body or mind and to never let the condition/illness itself bother you.

Depression can make people irritable and can make you annoyed with the most simple questions like, "how are you feeling?" Even though they may have asked that earlier. Sometimes we have to look at ourselves and wonder if we're being too hard on those around us who are obviously being supportive. Yes we do have that desire to BE normal or at least to FEEL normal (whatever "normal" is) but the fact of the matter is that we DO have an illness and some people know and honestly care.

Now its different when it seems like they care but are ignorant of the illness itself like, "I'm sorry you aren't well, maybe you shouldn't have done _____ or ate _____." That is simple ignorance and of course we're all annoyed with such comments. We know ourselves better than anyone but try not to let other people get to you so much.

 

[vonfunk]

I misunderstood the question here. I think for the most part it's the not just the desire to help, but actually listening. I agree with others there is a difference between supportive and patronising. It's more "I'm here to help" as opposed to "you're sick so obviously you need help"

 

[bruscar]

Hey Susie,

I think if people acknowledge your illness/disability or whatever in anyway, it is nice to see that they are taking you or your condition into consideration.

For eg, if you have a need for the bathroom when in someone elses house, and they offer you the use of the upstairs bathroom ! . . to me that is consideration, and it is nice.

Dietary needs are another, Can you eat this? . . . especially if they ask you discreetly, and indeed if they take the time to . . . . you guessed it . . .consider you !!

Any of these efforts are appreciated, and also get you back out on the streets of where you live instead of becoming a hermit.

Good luck with everything, oh ! and welcome !!

 

[Pirate]

I use to get annoyed with all the questions, the concerns that others showed, the dumb remarks on what I should or shouldn't do from ones that know nothing about my Crohns.

But then I look at the other side of the coin, my wife being by my side the whole journey, my parents dropping everything to be at every scope, sitting in my room when they were pumping out gangrene from my stomach or giving me 4 units of blood because I had crapped enough blood in one sitting to almost cause my heart to over work itself. Waking up after a Scope to see my brother that I hadn't been on speaking terms sitting by my bedside. Having my granddaughter offer to rub my belly because that's what helps her when she has a bellyache.
You can always tell who is asking out of true love and concern for you, you can choice to think of them as nosy or see them for what they are, supporters.

But the best was my oldest grandson at the age of 6 bringing his piggy bank to the hospital because he wanted to give it to the Dr. to make me all better.

So I guess I'm saying that we shouldn't get annoyed with the dumb, uncaring things that some say, but enjoy the love and support that those who really care bring to the relationship. Of course it doesn't hurt to gross the others out that say stupid things just so they quit asking. lol

 

[susie]

Thanks Amy, Misty-Eyed and CrabbyRelish, you're a big help.

Hey vonfunk, thanks, I also liked your earlier contribution about your boss offering do grocery shopping for you, in the sense that you appreciate that as a concrete way to lend a hand/be concerned about you, if I understand correctly.

Bruscar, the advice about the upstairs bathroom is great, the kind of thing I wouldn´t have thought on my own, or not in time, anyway.

And pirate, what a great post, specially the part about how you can always tell.

Take care, everyone

 

[Mountaingem]

I think the best thing for me is a hug, or a squeeze of the hand, not necessarily verbal support but just an affectionate gesture that says, "I'm here for you".

My 10 year old nephew rocks, when he notices I get that "Quick where's the bathroom" look he says "I have to use the restroom", so I'm not the only person in the group that has to go. Or he'll say "Auntie and I both need to find a bathroom"-so sweet!

 

[StarGirrrrl]

The support for me is what I have asked them to do (when I used to) go out with my friends. Just basically ignore if I had attack and don't draw attention to it, when I come back act like nothing is up. I like to stay as relaxed as I can during an attack and sitting on the loo thinking there will be a knock at the door anytime won't help, lol.

 

[vonfunk]

@ susie - my bosses have been more than supportive, I pulled the earlier one because it seemed like I was bragging. With my initial flare I was out of the office or 2 months and full pay, then the offer of buying groceries. Last fall after spending the summer in and out of the hospital, they placed me on reduced hours for 3 months, at full pay. it is the best company that I've ever worked for.