What do YOU think is the rational response to this behavior?

[goldylox]

I genuinely understand how and why most people know so little about Crohn's disease. It's just rare enough of a disease that it falls in the cracks. I believe part of the problem is that with so little awareness of the disease itself, how can we expect hardly anyone to also know much of the pain and life-threatening symptoms we experience are not from the Crohn's symptoms, themselves, but rather from the dangerous immunosuppressants and biologic treatments to keep our Crohn's disease in remission. My loved ones all know I had IBS for 20 years, but since late April 2013, for the first time I'm in a textbook Crohn's episode with uveitis, hip arthritis, diarrhea, blurred vision, etc. Although all my closest friends and family know this weird Crohn's thing caused me to be sick enough to be in the hospital, only my husband and 3 close friends have "been there for me." And that's enough, as most of the time I'm so fatigued I feel bad I've lost some conversationalist skills (nervous laugh). But there are several other people who I consider like family who have not so much as texted me just to say hi and/or see how I'm doing since I've been sick. These are the loved ones you like to think you would do anything for each other. One used to be like a sister to me. She has been increasingly selfish over the past few years and I've overlooked her lies and taken a step back. She knows I've been sick and in the hospital, yet all I get from her is a GROUP text of one of her children's first day of school.

I want to know if it's rational 1) to continue to back away quietly from these friendships (they've been on life support for a couple years, anyway); or 2) get over myself and accept the fact I'm ill and the world doesn't revolve around me.

Your honesty is appreciated!

 

[valleysangel92]

Hey, so sorry you've had such a hard time .

Honestly, I hardly hear from some of my friends, and I've known one since I was a baby, so I really get where your coming from here.

I think you have every reason to back away from unsupportive friendships. Yes crohns is hard to understand sometimes, yes it's hard to see the worst effects of it. But if a friends been in hospital you at least check if they are feeling better. So no I don't think your over reacting. This disease is so hard to deal with, and we need all the support we can get. So if you aren't getting that it's ok to be upset.

Your feelings are totally rational! *Hugs*

 

[goldylox]

Thanks so much for responding. Sometimes we just need to feel confirmed by others in similar situations. I should have joined this site weeks ago!

 

[shamrock15]

Lots of good opinions around here. You'll find that even though everyone's crohn's behaves differently, you will find someone who has been through just about everything you have. Sort of strange, but it works.

I think you are actually right with both 1 and 2. If you are saying some "friendships" are on life support, you already know the answer to that one - don't invest time. I wouldn't say avoid the people, just don't actively chase. You have much better things to use your energy on (I would say that even without the crohn's).

I do think we also have to accept our disease, but the key is not to let it dictate to us. That can be really hard. I genuinely believe that we can do much more most of the time. However, it really takes an almost superhuman effort and some days you just need to curl up and take personal time. Crohn's has a way of making you see what is important in your life.

 

[bjaycat1985]

Hey, just wanted to say I agree with what the others are saying here and also I will tell you an embarrassing feeling I had.

I got super sick about six weeks ago and missed three weeks of work. We have a very close, suppprtive team and employer. So everyone expressed all kinds of concern, a few people came to visit, they called me and put me on speaker phone and told me they would help with the dogs etc if I were to be hospitalized. Several people sent supportive messages through text and the phone. I was kind of too sick to talk or text but they were good about that.

Anyway.... The point is, I went back to work and realized I had not received flowers. Our company typically would send flowers in this type of case. So intellectually I knew this was an oversight but because of my self confidence and depleted emotional state I was really hurt. Then I see people getting flowers for a freaking paper cut practically and I felt so down. But I was also ashamed of feeling that way when obviously people were very supportive. My boss didn't even doc me for any missed time. How much so I want I told myself?! lol. Luckily I didn't (by some miracle considering how mentally messed up feel after this bout) have a hissy fit and say anything.

Now that I don't feel so vulnerable, the feeling just dissipated. I did however decide that I'm going to start guarding my own internal resources more and not give so much away to the ones that never seem to be there when I'm sick. So it was kind of a bit of some people are great and some sucked in terms of being there for me. I expected better by a couple. My best friend in particular.

So I don't know what my point is other then I understand the feeling lol. I don't know whether I'm being reasons. able in my expectations of others so I don't know what to take sometime

 

[Axelfl3333]

Goldylox not to be mean I,d go for option 2 on your first post.when I think back I hope I was grown up about friends and family being long term ill but probably wasn't,t I,m miles better now iits natural for all of us to close ranks march on and basically forget,ignore people that drop out of our lives for whatever reason cruel but that's life

 

[Axelfl3333]

By the way I,m not cynical but if you keep slapping the puppy when it jumps eventually it stops

 

[Patricia56]

Um, yes?

For some of those folks it may be that their own lives are chaotic now and you don't know the circumstances because you've been out of the loop or they simply aren't saying much. Not everyone tells their friends when their marriage is on the rocks for example.

At the same time if people are lying to you or acting in ways that signal they want distance like not replying to your contacts then I say dump them.

And sometimes it's not a bad idea to just put it out there, especially with someone whose friendship you have really valued. "I have really appreciate having you in my life. But lately we don't talk much or see each other. So I'm wondering - do we still have a friendship here? If so, what works for you to help us stay connected?"

Sure hope you are feeling better soon.

 

[tillylala]

I can echo this post almost exactly, since I became really ill in May I haven't heard from one of my closest friends, I have been in hospital, intensive care, then pulled myself together a bit been on holiday, and finally returned to work this week. I have loads of friends, each one has messaged me throughout almost daily, each step of the way. But not his one close friend, its very out of character and I don't understand at all.
She didn't message or have any contact when I was seriously ill in HDU. I saw her mother who mentioned how ill I had been and said "oh yes she was following what happened on Facebook". Ohhhhh well.

So I concentrate on the friends that thought about me, took the time to visit me, brought me cards, flowers etc (not that the material things matter)
I will never forget the ignorance, but hold no grudge, if we try and understand people we make ourselves ill!!!!

Take care and try and surround yourself with positive people.

 

[shamrock15]

Not an excuse - but there are some people who just don't know how to handle being around sick people. You are healthy now, maybe just "I missed talking with you when I was off work." Gives your friend a chance - if you get stammering and excuses, write it off. If you get a plausible explanation, you may not have lost anything. People change... Stick with your true friends. They are the ones you need most.

 

[goldylox]

Crohn's has a way of making you see what is important in your life.

I love what you said in your post, but this stuck with me the most. *SO* true!

 

[Jennifer]

Since I went out of remission and had my own hospital stay I found out who my real friends are. Apparently I have no true friends other than the ones here on the forum. I still have family and my husband but those friendships I made in high school, college and grad school weren't real friendships that were meant to last. They don't know what to say and I guess they assume that its best to say nothing at all or maybe they think that I'm used to this sort of thing since I was diagnosed in 1991 and have been in and out of the hospital ever since. The hospital doesn't become more fun over the years and I've never gotten used to it yet they must all be too busy to ask how I'm doing.

What I've learned is that thinking about this or dwelling on it only makes me upset, be it angry or sad (usually both). So instead of trying to reach out to these people, to try and see if I could somehow make them care, I decided to just drop off the face of the planet the way they did for me. If they have their own legit problems I'm sure I'd respond as I'm not a cruel person but I will not remind them that I need their support if they aren't willing to give it.