a question for the long-termers

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).

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?

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.

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...???!

... 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...

"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.

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!

 

 

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?

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.

:-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?

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 [email protected] 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.

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... 

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))))))))