a question for the long-termers

Ivy, as you know I have had this disease for over 30 years. My first husband eventually left me I believe because he couldn't handle being with a sick person. What's strange is I was in remission 90% of the time we were married. But as any Crohnie can understand being in remission doesn't mean you feel perfect all the time. Joint pains etc.

I can remember for a period of time when my girls were all out of the house and I was truly alone for the first time in my life, how lonely I was. I remember sitting in church and watching others greeting and hugging people and I would sit in my chair waiting for someone to come and greet me and it never happening. How I could have used that simple act of a hug. I use to pray for God to bring someone into my life. The only friends I had were at work, but because of my health I couldn't go out much after work. When I would go out it was always to Happy Hour (because that was what young people did for fun) and I would end up feeling worse because I drank.

I still don't spend alot of time out of the office with friends. Luckily for me I have a wonderful husband now, and I spend all my time with him. And he loves me unconditionally, so I feel blessed now.

But I so understand how you feel. I was there once too. I wish we all lived closer so we could spend time with friends who truly understand what it means to be a friend in good times and bad.

Big Hugs,
Gail *Nanners*

With very rare exceptions, I've always found that those who are the most generous and caring with other people wind up brutally disappointed when they find themselves in a position of needing care. You don't have to have CD to experience this. All the women in my family (myself included) sound just like you: always the one who's sensitive to other people's problems, listens to their troubles, figures out exactly how to help them out without harming their dignity, makes herself available in crises. Often, when it's your turn to be in need, you find out that other people--even your friends and relatives--aren't as kind and perceptive as you are, and that you're the one who's been holding the relationship together by always being there. It's a very tough realization, and it really hurts (on so many levels)--but, being the person you are, you'll probably somehow find a way to keep your bitterness from consuming you. And you'll deeply value anyone who is there for you in your darkest days.

My heart goes out to you. It's so painful to deal with disappointment and loneliness when you're already dealing with a debilitating chronic illness that few people understand. Like andorable, I'm wishing that I lived nearby, so I could hang out over a cup of tea and a movie. I'm sorry that you have to be so brave on your own.

Ivy...I really know what you mean. I'm in this tower of isolation...yet I have a caring and thoughtful husband and father, and even father in law(I am so thankful for that)...Most of my family (yeah, have lots...big latin familia) nor my friends come around...and I don't want to push myself on them.

I don't have a disease that people know about(like cancer or diabetes), and when they do, frankly, many of them are disgusted by it (There was a radio personality who stated he'd kill himself if he ever found out he had this disease...for you zonnies, it was the KUPD blowhard...like the music, but will never ever listen the this a**wipe again).

My mother in law, strong in her catholic beliefs, will help the sick...those who are not related to her...she believes that "if only I ate better, thought more positively...ad infinitum", I would get better. My disease is essentially my fault.

Sometimes I want help so bad, but I am sooooooooooooooo embarrased to ask. My neighbors have kindly offered help, but maybe it is me too, I cannot ask...Nor can I tell people truyly how miserable I feel (I don't want to bring others into this misery, I have a hard time even telling my docs how miserable I am)...

Spookyhust...did you state you live in AZ? I am interested in meeting people who are affected with this...going through similar situations. I am glad for the computer interaction. In the last 2 years or so, reading all of your posts, I have become aquainted with you all...the lonliness is less...

Becoming undone,
That is when you give the good old Catholic response of "evidentally I am suffering for those souls in purgetory, so you don't have to." Being Catholic myself helps with doling out that guilt right back...LOL, but darn it one has to have energy to be smarty pants!

Thanks, all, for your moving replies.

I think I was always a listening, nurturing sort of person anyway, but I do wonder if these qualities have been brought out more because of our illness. It's almost the only friend-role we have left, seeing as we can't be the types of friends who are always fun and happy and going out to parties. I know that I made a conscious decision, years ago, that I'd better emphasise the quieter qualities or else I'd have no friends (ha) at all.

I'm not perfect. I do have a tendency to withdraw when I'm in pain, and I can't be as constant a friend as I'd like to be. That said, I do often feel that I'm still more constant in my friendship than the people around me.

I don't know... it's a problem. I don't even know whether we cause our own disappointment by having unrealistic expectations of people, or whether other people have unrealistic expectations of us, or what.

Ivy.

Ditto what Fitzy said...
I haven't had this long at all, but even before I was with a sure diagnosis my friends disappeared. The only time anyone pops up anymore is when they need something from me...

Oh, Fitzy. And you're one of our stars who manage to lead a half-way normal life despite this illness. *hug* I'm so sorry you contend with this problem too.

LMills, I lost most of my "friends" on diagnosis too. It's incredible, isn't it? You've always struck me as a truly good person who would be nice to know in real life. I'm sorry you've had to contend with this, and I hope you hit a long remission soon, so you can meet new people.

I am lucky to be able to have kept one very good friend. She isn't one of the people I'm referring to in this post, though I'll admit I'm missing her atm, as she's understandably v busy with a new baby.

I wonder... they sometimes talk about a Crohn's patients having a common personality type. Maybe we're *all* thinking the same way, and responding to people in the same way, so maybe having the same problems...?

I.

Becoming undone said...
Spookyhust...did you state you live in AZ? I am interested in meeting people who are affected with this...going through similar situations. I am glad for the computer interaction. In the last 2 years or so, reading all of your posts, I have become aquainted with you all...the lonliness is less...

Yep, for almost 6 years now. Sure beats Nebraska . There are at least 2 other people here from AZ...and of course, I'm drawing a blank on their names .

I AM NEW TO THIS FORUM, BUT NOT THE DISEASE. I AM SO AWARE MYSELF OF HOW NO ONE WANTS TO BE AROUND SOMEONE THAT IS SICK ALL OF THE TIME. IT IS REALLY HARD NOT TO LET THIS DISEASE DEFINE YOU. AND HUMAN COMPASSION ONLY GOES SO FAR SOMETIMES. YOU DO NEED A REALLY GOOD SUPPORT SYSTEM. IF I LIVED CLOSE TO YOU, IVY, I WOULD BE YOUR FRIEND AND WE WOULD HANG OUT! BUT REALLY CLOSE TO A BATHROOM! LOL!!!!!

Ive posted on here before about this subject. Today I was carrying in groceries and can barely walk from an arthritis flair. My neighbor was standing outside and watched me struggle back and forth till I got them all in my apartment by myself. She never once even acted like she was willing to help. I've thought about that all day. very sad how some people can be so self absorbed. If I saw someone struggling like that I would insist on helping even in the state Im in right now. Some people are so totally clueless....totally!!!

P.S. Needless to say but if she ever falls and needs help, I will be tempted to step over her and go watch TV

Mind you, there are always the self-righteous but clueless people who watch you, barely able to walk and struggling to lift a bag of groceries into the trolley, who bustle over and say "so sorry to hear that you've been unwell; remember I'm only a phone call away, so if there's ever anything you need, anything at all, don't hesitate to ask"....

... and then happily bustle away without even waiting for an answer (or giving you their phone number), self-satisfied in their belief that they've Done the Right Thing.

Grrrrr. That's happened to me on many occasions.

Ivy.

I'm just against people offering when they obviously don't have any intention to help in the first place. THAT I have had experience with.

If you're going to do something then do it. Don't claim you're going to when the person you're saying it to is right there.

I still like to give people the benefit of the doubt :/

... but really, it's not help I'm looking for; I'd just like some friendship and people acting as if they cared about me... not out of a sense of (occasional and fleeting) obligation because I'm "the sick person", but just because I'm plain, ordinary *me*.