a question for the long-termers

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ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 5/28/2009 3:53 PM (GMT -7)   
Please don't answer this question unless you've been seriously ill and had this disease for more than twelve years or so - ta.

Has anyone had any success in building satisfying friendships? If so, how did you manage it?

I've spent most of the last ten years in a very severe flare, and spent a lot of that time bedridden. Most of my friends disappeared during that time. It is only since the advent of Remicade and Humira that I've achieved a small amount of mobility, and I've been getting out a bit more and have been trying really hard to make new connections and build new friendships.

Just for the record, I'm a fairly self-sufficient sort of person. I'm not one to jump on the phone and wail the minute something goes wrong; am more likely to be the person who listens to the other person's problems; try to stick by other people while they are struggling, and hardly ever ask for help myself (though am grateful if someone ever offers it of their own accord).

I thought I was doing really well in building new friendships... really, I did... I've listened & supported through their marriage problems, picked them up from the train station, sympathised while they whinged because they had colds or sore bones, etc etc etc etc etc, and have generally tried to be good company. Now, I find myself in a position where I'd really appreciate a little bit of TLC myself (very painful and disabling joint disease flare) and *nobody* is there.

The deacon from church dropped by to find out why I hadn't been to church lately (been in hospital several times; also have joint pain that is making it hard to shower and dress myself, let alone drive to church & sit through the service), made a few sympathetic noises, and disappeared. I've dragged myself to social functions, obviously very ill and hardly able to lift my cup of tea, and *no-one* has said "are you ok?" or checked on me afterwards to see if I'm managing, or even just to say hello.

Seriously, had it been me, it would have been, "that must be upsetting for you; would you like to talk about it?", or "well, if you can't drive, Mrs X lives near you and could give you a lift to church, would that help?", or, at the very least a phone call a few days later to say, "you were really sick at our last function; how are you now?".

As I said, I check on *them* when they have colds, so it's really upsetting to be ignored simply because I've committed the crime of being ill. It's not like they need to be scared I'm going to ask them for help, because I generally don't, and wouldn't.... I'd just appreciate some contact and someone acting as if they cared.

I've been thinking a lot about this lately, and I think there are some screwy power dynamics here. They have the power; they can flit in and out as they choose, and be as suppportive or unsupportive as they like. I have less power, and am lonely enough to be desperate to make & preserve friendships, so need to be there constantly... listening, listening, listening and supporting, even though (evidently) it won't be reciprocated. It's upsetting.

So.... has anybody had any success in forging friendships that are equal and reciprocated, or do you all feel the screwy balance of power, as I do?

I'm pretty sure this problem isn't unique to me. I watched my mother go through it too, as she fought & died from cancer.

Ivy (sad and fed up).
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MMMNAVY
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Date Joined Jul 2006
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   Posted 5/28/2009 5:16 PM (GMT -7)   
BIGGEST Hugs(((((((((((((((((((((((((((IVY))))))))))))))))))))))))))))))))))))))))
You are not alone in your feelings.  I would love to hear peoples feelings on this.


Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 5/28/2009 6:22:04 PM (GMT-6)


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 5/28/2009 5:37 PM (GMT -7)   
Thanks, Navy. I know you're experiencing this too. I thought maybe you'd have some answers yourself, given your field of study... :-( It's a problem, isn't it?
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MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 5/28/2009 6:04 PM (GMT -7)   
The only thing I have found is you have to give people exact requests, most people do not have the intuition to ask things like "would it be helpful to have a ride to church?"
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/28/2009 6:06 PM (GMT -7)   
Yes, but the problem then is that they then subject me to a lecture on The Importance of a Good Attitude and how I am probably Not Trying Hard Enough, or suggest a zillion things that I Should Be Doing, even though I am struggling with the basics and don't have any energy for the things I *have* to do, let alone the things I *want* to do...

... and still don't help. It's a catch 22, really.
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*Phoebe*
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Date Joined Sep 2005
Total Posts : 769
   Posted 5/28/2009 6:18 PM (GMT -7)   

I know I’m not a long-term sufferer, only having this disease 4 years, but being 23 and being so ill is difficult and my friends don’t understand. I recently had someone telling me they realised they ‘shouldn’t get mad at Phoebe when she can’t come out dancing and never does anything spur of the moment and is ’. It hurt. A lot. And I know it wasn’t intended to. But people’s naivety cuts deeper than anything else.

 

I’ve found the only people who understand – really – are my parents and my boyfriend. So I just surround myself with those people who understand.

 

I agree; generally people won’t help unless directly prompted. I guess it’s hard to know (unless you are sick) just what a sick person needs and what they can/can’t do, and what is hindering their life.

 


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 5/28/2009 6:19 PM (GMT -7)   
ps. I think that what they really want is a friend with an acute illness, who can receive care & concern and then provide them with the gratification of an identifiable response, i.e. getting better.

This business of a young person being constantly unwell and not really improving, despite medical care and expressions of concern, is baffling to them... hence the constant criticism from church, and the implications that I'm not trying hard enough.

In terms of specific requests, I don't think it should be necessary for a friend to say, "I would appreciate it if you rang from time to time to say hello". If you have to specify that, then it ain't a friendship at all, imho. I just find it curious that the friendships have suddenly disappeared, the minute I've gone downhill. I've even rung *them* and invited them to coffee, and had no response...???!
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MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 5/28/2009 6:23 PM (GMT -7)   
It is such a double edge sword, it is kinda why I went into it. I am stuggling with brothers (2 of whom are holiday siblings) and my extended family who are not big on being there. I wish I had a magic wand to fix it. I am seriously considering a retirement community at 30, I am not sure if I can safely continue to live on my own.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/28/2009 6:27 PM (GMT -7)   
... Yes, Navy, I can relate to that... completely. The problem is that you're just as likely to end up as (more?) isolated there than you are in the "real" world...
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Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 5/28/2009 6:52 PM (GMT -7)   
Ivy,

I'm so sorry you are having such a hard time, but I do understand. I have always been the "care giver". I do have a couple of friends who will say things like I'm sorry you are going through that, or the like, but for the most part, I just don't talk about what is going on. I just can't deal with the fact that no one really understands, not even my husband really gets it. I think that is why we have a place like this, where we can vent. But, I am the first one, to make a caserole or offer to watch someone's kids, no matter how I feel, yet I can't remember the last time someone brought dinner to my house. Even when I was in the hospital and my husband was trying to take care of our two kids and still work. I just think that unless someone is actually going through it, they can't understand it. And maybe that is why people like us are the first ones to offer help to everyone else.

Hoping you can find some good days soon
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/28/2009 6:56 PM (GMT -7)   
"And maybe that is why people like us are the first ones to offer help to everyone else."

Yes, Suzanne, I think that's right. Thanks.
Co-Moderator Crohn's Forum.

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Post Edited (ivy6) : 5/28/2009 8:00:22 PM (GMT-6)


cindywchrones
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Date Joined Mar 2005
Total Posts : 1115
   Posted 5/28/2009 9:13 PM (GMT -7)   

I was very bad in 2004-2006..I could not eat so dinner was out of the question.  I was very much into going places and doing things..I could  barely get off the couch to sit in the shower..When I went back to work..I barely made it through the work day and did not want to go anywhere except to bed..I had been the mother that was at every practice and game with my kids, and I couldn't anymore..I could not entertain or feel like going to visit any of my friends or family..My husband felt alone with no running mate anymore, and I did lose any friendships except maybe a few acquintances at work..I did not feel strong enough to sit through service..I did feel isolated and worried I might not get better or even get worse..It was a very dark time..I wondered about disability..It stunted my career,and I am not motivated to climb the corporate ladder anymore..I do not take one day for granted anymore..I start a new job on Monday..I have been off work which I am better now..I don't know my future or whether I could hit a major flare after I start and get fired!!  I definetly understand how you feel..

 

Cindy


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 5/28/2009 10:34 PM (GMT -7)   

Hi Cindy

 

I also struggle with work issues and having to take time off. I started a new job in March and have had to have time off twice for abscess surgeries, and spent the rest of my time limping about the office when I was at work.

 

It all depends on your work mates and hopefully you will have kind and compassionate ones like I do. But most of all, I wanted to say best of luck with your new job, there’s nothing that makes you feel better mentally than achieving that goal of getting through the working week when you have crohn’s! I think once you get back to work you will find yourself feeling more ‘normal’ than before – it can serve as a great distraction from your illness. A burden and a blessing (the job I mean). When I returned from surgery I was petrified of the pain of sitting at work all day (I only had 4 days off to ‘heal’) – but being around all the normality of work really helped in a lot of ways.

 

And you’ll get to mingle around in a social scene again!

 

 


spookyh
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Date Joined Oct 2008
Total Posts : 1342
   Posted 5/28/2009 11:02 PM (GMT -7)   
I've had crohn's for about 15 years. My relationships are long since gone. The only people I have contact with are my parents, and occasionally some people at my dog park. The good: I don't have to deal with crappy fair weather friends. The bad: it can get kind of lonely. However, at this point, I'm kind of used to it. I can at least depend on my parents, so that's cool.

EDIT: Thought I'd also mention that I live in a retirement community with my parents. It's a little strange never having contact with anyone younger than my parents. Luckily, I grew up in a neighborhood that was mainly old people, so I guess it wasn't a huge adjustment. Initially, people kind of eyed me with suspicion. Even the dogs at dog park tongue. But now they seem to have accepted me, even the young-people-hating dogs (except for one chihuahua who still hates my guts for not having grey hair).
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods

Post Edited (spookyhurst) : 5/29/2009 12:21:55 AM (GMT-6)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/28/2009 11:07 PM (GMT -7)   
Yes, Spooky, that's my problem: my parents have died :-(.

I was thinking of you when Navy said that she was thinking of moving into a retirement community. You don't have friends there, do you?
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spookyh
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Date Joined Oct 2008
Total Posts : 1342
   Posted 5/28/2009 11:20 PM (GMT -7)   
That's sad Ivy sad. I don't know what I'd do without my mom. It's something I've begun to worry about in the last couple years. She's the glue that holds the household together.

I updated my other post about living in a retirement community. I know quite a few people from dog park, but only see them on occasion (now that it's summer here in Arizona, I won't see a lot of people till next fall). There are some very nice people here, and I can have a nice conversation with them, but our relationships pretty much begin and end at the dog park. I was in the Canine Companion Club, but since their events all revolve around eating, I don't do that anymore (being SCD). It's nice to at least be able to chat with people, but it's also not quite the same as hanging out with people your own age. I can't complain horribly though, this is a pretty nice place to live. It sure beats the snow and cold from up north!
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/28/2009 11:26 PM (GMT -7)   
Yes, I think I can imagine what you mean, Spooky. Due to weird life circumstances, most of my acquaintances are much older too, and it is sometimes hard to relate to them as equals... and hard, too, not to be able to discuss music or films or current affairs with them, because our tastes and opinions are going to be so vastly different.
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spookyh
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Date Joined Oct 2008
Total Posts : 1342
   Posted 5/28/2009 11:36 PM (GMT -7)   
Here I am partying with people that are at least twice my age smilewinkgrin. Can you guess which one is me?

http://i43.photobucket.com/albums/e373/spookyhurst/dog8.jpg
http://i43.photobucket.com/albums/e373/spookyhurst/dog6.jpg

Ivy, I know what you mean about discussing things like music, movies, books, and video games. Most people here don't share the same interests as me. But, at least more baby boomers are arriving, so there will soon be less Laurence Welk and more Beatles. That's a step in the right direction turn.
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/28/2009 11:49 PM (GMT -7)   
:-P No, it's not hard to tell, is it??!! :-)

Without being morbid, will you be able to stay there if your parents aren't around?
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spookyh
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Date Joined Oct 2008
Total Posts : 1342
   Posted 5/29/2009 12:03 AM (GMT -7)   
It's questionable. The rules state that you have to be 55 to live here. Also, anyone 19 or older can live with that 55 or older person. I think (but am not positive) that if your spouse dies, and you're under 55, you can still stay here. Other than that, I don't know. It's definitely something I wonder about though!

EDIT: I just asked my mom, and she said I could probably stay so long as some busybody didn't turn me in. As far as I know, I don't have any enemies here, so maybe I could get away with it.
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods

Post Edited (spookyhurst) : 5/29/2009 1:06:26 AM (GMT-6)


omigrandma
Regular Member


Date Joined Dec 2008
Total Posts : 57
   Posted 5/29/2009 3:51 AM (GMT -7)   
Good Morning Ivy Et. Al. I have suffered from both Crohn's and Colitis for 30 long years. I ache for all of us because this is such a devastating illness and on top of all of that it is so lonely. Don't we spend most of our time in the potty anyway and when we are not there we are in bed; so how can we have good friends who understand our disease?

We all receive so much information on our diseases but a new one that I got the other day was the following: "Especially for People with Crohn's Disease" As part of this ongoing commitment the Crohn's and Colitis Foundation has developed and Information Resource Center (IRC). They offer information, guidance, and support. They have an email and a phone number and another thing they can do is give you a chapter of a local Crohn's Colitis Foundation in your area that may offer you even more support.

email is info@ccfa.org and the phone number is 888.MY.GUT.PAIN

Whatever it's worth, it is just another option that is new, so good luck and TRY to get through this. I just finished reading "Kitchen Table Wisdom" that was recommended by many people here and it was awe inspiring. I wish you the best.

aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 5/29/2009 4:00 AM (GMT -7)   
not to thread jack but my mom lives in a similar type of place and I will go there to visit week everynow and then and you would really be surprised what you have in common with people that are in their 60's-70's. They are big with the gossip lol but I have had some of my best conversations with some of them with an open mind. But yeah I find myself doing alot of things by myself just for the fact I don't really want to deal with the hassle of having to stop the group now and then.I am so used to it now, i really don't even think of it if i go out and eat by myself or go riding by myself.
SCD since 01, remission since 01, occasional random junk food breaks :)
No meds ever.

Post Edited (aoccc) : 5/29/2009 5:04:39 AM (GMT-6)


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 5/29/2009 6:12 AM (GMT -7)   

I wonder if by being ill I burn people out?  I feel more and more distance from my little brother and I depend on him alot to help me to take care of myself (laundry, dishes, etc.).  Perhaps it is expecting too much out of a sibling? 

I am a bit mad at myself for not getting married and have kids as soon as possible.  But was it such a crime to want to build a stable career first?  But given that my romantic relationship crumbled under strain...who knows... 


Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 5/29/2009 7:29:01 AM (GMT-6)


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 5/29/2009 6:22 AM (GMT -7)   
yeah exactly...I've accepted the fact I wont be married again (pre-Crohn's) or have kids. The post crohn's part of my marriage was terrible because of it and I just don't feel like putting in the effort again. I have casual friends at work etc but I don't feel like getting close enough to go out and all.
SCD since 01, remission since 01, occasional random junk food breaks :)
No meds ever.


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 5/29/2009 6:27 AM (GMT -7)   

Hi Ivy,

Im really sorry to hear u are having a lonely and sad time. This lousy disease does do that to u. I was diagnosed with crohns/colitis 21 years ago but we are sure I had it long before the actual diagnosis. Anyway as u know I have spend much of that time seriously ill with it and ended up with this ileostomy and it truely has given me back some kind of a life. I too am so much like u in the way I have always been the person trying to help everyone else and none of my friends or family ever heard me complain about being sick they would only find out when i was rushed to hospital yet again. I am lucky I have some wonderful compassionate friends and family. After my ileostomy surgery my sister made enough meals to last me 2 weeks and had friends dropping by, but when I was at my worst I shut everyone out. I wish I could offer some kind of solution so u wouldnt feel so down and I know its not the same as having someone over for a cuppa and chat but we are here for u Ivy, wish I lived near by so I could drop by for a visit :-) . I sure do understand how this disease takes its toll. Is it a possibility for u to have an ileostomy too? Take care Thinking of u and hope things get better soon

(((((((hugs))))))))

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