Helping others understand

Good luck getting someone who does not have the disease to read a book about it! I cannot even get my grown son to read one, and he has UC! 

You might have better luck getting them to read a brochure. The CCFA has a number of different brochures you can print or order. Maybe one of them would suit your needs.

http://www.ccfa.org/science-an...s/patient-brochures/

Jan

While you are certainly *Allowed* to be sick (it happens to everyone), you do not want to fall into the trap of being a victim and feeling sorry for yourself. That can result in losing otherwise good friends who recognize it when they see it.  Although books and literature can be helpful, nothing beats a sincere one-on-one talk with others to explain YOUR condition, limitations and feelings. Your true friends will stick by you, and the others will, well …   Meanwhile, you will want to do things for yourself like getting plenty of exercise, eating a well-balanced diet and participating the best you can in outside activities. Feel joy in what you can do.

We pretty well suffer in silence. 

That's where this website and others come in.  

And this website helps us a lot. 

Richard. 

granted in theory we are cured of UC in the absence of our colons but I think the following is one of the best pieces I have ever read regarding IBD, and one can certainly see how it applies.

http://thegreatbowelmovement.o...-crohns-and-colitis/

its not a book but it is a long read. but a worthwhile one.

another one that I find interesting and a shorter read is:

http://batsgirl.blogspot.com/2...a-in-your-house.html

some people like the spoon theory

http://www.butyoudontlooksick....ne/the-spoon-theory/

I believe that the gbm piece is the most thorough, but on a simpler less taxing scale the gorilla or spoon theory might get your message delivered.

I do, however, agree wholeheartedly with Bill regarding being the victim. Its an easy rabbit hole to fall into. and important to watch for. when I do slip I try to remind myself Victor not Victim.

hang in there and keep your chin up.

Some will and some won't...Some do and some don't...and there is really nothing that I can do to change that.

That is my philosphy for pretty much everything these days...from getting the G-kids to eat broccoli to getting my in-laws to understand about my disease.

Hubby, who is pretty darn good these days at understanding what is going on since he has had a heart attack and multiple breaks and surgeries still does not 'get it'...he asked me why I was so tired lately (a bowel twist and partial blockage will do that to a girl...Sort of like shopping the sales but with less food & fun).

I can't explain it to him because he hasn't ever lived it although he has lived through about 15 surgeries with me.

If they really wished to understand then they would ask (or at least ask Google!)...so either they don't want to know or are too embarassed to ask.

Either way a book is just an unnecessary expense or a useless paperweight!

Those who want to will...Those who don't won't...

Time to find new friends or spend more time with the ones who 'did'.

Sharon

Wow guys, I'm pretty offended. I googled the phrase and results came up, I know the literature is out there. My fiancé is Christian and I am not, so we're reading books about each other's faith. None of this was about self-pity, I am allowed to be upset with people in my life. Reading a book to understand your close friends or family's perspective is absolutely NOT unheard of. My father was bipolar, so when I was finally old enough to understand it, I read a book about bipolar disorder. As well as my brothers having autism, my mom read us excerpts from books throughout my childhood, thought there was much less information on the topic in the 90's, I started reading about it when I was 12, in 2000.
I usually come here and find support, and while I realize you cannot sense tone, I think the word "empathy" threw you off. In case you didn't know, there is a difference between the words "empathy" and "sympathy." Here is a nice video explaining the difference:
https://youtu.be/1Evwgu369Jw
Shame on you for your judgments, people come here for support. I am 100% disheartened. I hope this thread isn't deleted, I deserve a chance to stand up for myself. How is that for self-pity? Moreover, admitting you have shortcomings you failed to foresee, in what is now the rest of your life, is not feeling sorry yourself. Yes, focus on the positive, but don't pretend the negative doesn't exist--denial just makes things worse.
That said, thank you for the actual links and not just a lecture, Dewey.
I'd also love to remind you all to assume is to make and an ass out of u and me.
Have a great evening.

Kelsey, I agree with what others have written, and would add the following: if your friends are fleeing, or acting unpleasantly, it may be worth taking a moment for self-reflection. It's easy for feeling lousy to degenerate into complaining, and pretty much no one will stick around for that if it becomes constant. So maybe they're just angry at you for cancelling plans when you become ill, and that's prettty ugly, but there are lots of different ways of cancelling. It's easy to forget when you feel like hell that the cancellation inconvenienced them, too. I'm honestly not criticizing (I have no idea what's actually happening in the moment), but I do find it worthwhile to take a second look at my own actions when I don't get the result I was hoping for.

Separately, I hope you're taking all reasonable actions to work out why you're having so much trouble. That's not the expected result after J-pouch surgery, though it can happen, of course. While some of us have problems that just won't respond to appropriate therapy, folks sometimes come to the site who've clearly not been well cared for by their doctors. I don't even like the word "flare" for this reason, unless it refers to a known condition. J-pouches don't flare unless something else is actually doing the flaring: cuffitis, Crohn's, adhesions, pouchitis, etc. can get nasty without much warning, but they can also be treated. Perhaps there's room for improvement with the right gastroenterologist?

In any case, good luck!

Kelsey, sorry you are offended. I don't think anyone intended to offend or make light of your request. I think it is natural to want those close to you to understand what you deal with. I agree that it is not unheard of for people to read books to educate themselves about issues their friends and family are going through. That said, I also think it is a lot to ask of other people (unless of course, they are asking for literature). This was why I suggested the CCFA brochures. They are a condensed version of available information. But, you know your audience better than I. I was just giving you my thoughts based on my 45 years with IBD. None of my friends or family have ever asked to know more than I would tell them.

Jan

Kelsey, I went through a similar problem as you a few years back. I felt unsupported - "unheard" - by my husband. I will share what helped me, thanks to the guidance of a wonderful therapist: I directly asked for what I needed. I'd say things like, "I won't go on and on, but can I just complain about my situation? I don't even want advice, just please listen." It's simple, it's direct and it's easily understood by and doable for them. I realized that people who love us want us healthy and happy and feel helpless in the face of not being able to make us so. It makes them feel helpless, they can react with anger, even towards us. So being succinct, direct, and as neutrally emotional as possible can actually help them to help us. No one will EVER truly understand what it is we go through unless he's gone through it himself. It's just a little tidbit of advice, but I hope it helps. As far as them not attempting to see your situation, same thing. Explain that you know it's hard for them to see you like that but it's hard to be you, too. Just plain facts.

This was based on one individual girl friend's and my fiance's request to find out more about the illness.
Everyone else turned it into me hoping others would understand if I handed them a book and walked away. I'm not pushing this on anyone, this was an outside request. 
This was after my friend handed me four books to understand what she was going through. Some people just think differently I guess.
I am in acupuncture, go to physical therapy, and see all my doctors monthly (except my surgeon). I even do integrative healing I think it's wrong for all of you to assume I am being misunderstood because I'm doing this to myself. I haven't been sitting in my mother's basement just waiting for my luck to turn around.
You guys were kind of helpful in 2009. I have had pouchitis and cuffitis MANY times since 2010, and chronic pain "flares up," so, sorry you don't like the term, Scott, I don't like your attitude.
Everyone is going way too far off topic and getting self-righteous on me. If you don't have a book for me to read, then fine, tell me to go fly a kite, but don't assume you could live my life better than I am, don't assume I'm not self-reflecting, don't assume I'm wallowing and wondering why no one understands me, like an adolescent bubbling with teenage angst, don't assume I'm cancelling plans STILL to this day, or when I'm not flaring (of my legitimate diagnoses that do in fact flare), don't assume I don't think positively, don't assume my surgeries took the same toll yours did. Don't assume I don't do yoga, don't assume I don't take my dog on a walk everyday, don't assume I don't lift weights for at least an hour everyday. Don't assume I'm not managing my diet. Don't assume I'm not going to doctor's appointments three times a week. Don't assume just because you did it eloquently that you didn't hurt my feelings. Don't assume your judgments are actual advice.
So many assumptions and judgments. I am so disheartened and hurt. I think it's time for me to keep things to myself. Thank you for your help in the past to Jan and Sharon.

Whoa! Plenty of assuming on both sides I think!

You never mentioned in your original post that your fiancè and girlfriend requested information. Not sure how we were to assume that. To me it focused more on how your illness had affected your life and how you would like those close to you to be able to understand and have empathy.

So OK, I'll own any assumptions I made, and I apologize for that. I have no doubt that the others had no ill intent either. But, Kelsey, you are assuming we are judging you. Not true. We are all here to support each other. Sometimes we just don't hit the mark. We are only human.

Jan

Kelsey,

Could you write something yourself for them to read?

Personally, I find it easier to give them something from me than from someone else.

You are a good and elequent writer. You know how to express yourself to us and how to explain things well.

Do you keep a journal? Sometimes it is your own words and your own journey that say it best.

I am a writer (in my mind) and find that when facing those that I love in situations that are potentially emotional (I can easily break down in tears when faced with high stress emotional situations and therefore cannot explain or get my point across) that a note or letter or email does the trick...I go for a walk and think it through first and then put the information on paper...like the wherefore and why of my condition, how it effects my body, why I cannot eat or what I cannot do...

I also give some people lists...sort of a 'to do' list of things that I need/want when I am hurting. (ice cream, a good book, a heating pad...)

I am sorry if you felt judged when you needed support, information and a help.

That was not my intention. This is The place where you should feel safe and understood. You deserved better from me. 

Sharon

I was having a rough morning and read this string and all the responses. Thank you Jan, Sharon, Bill, Richard, Dewey, Scott, Lambie. Whenever I hit the site, like today, looking for some guidance or empathy, I always read you giving of your time and effort to help others with all of "this." I don't often post, but I have been helped by you, by proxy, and I just want you to know how much I appreciate you sharing!

Kelsey, please try not to take offense. Everyone here is sharing his own experience to try to help others and we're only going by our interpretations of posts. We don't always agree (I posted a similar plea as yours about two years ago and advice was direct and no nonsense, but it got me out of my own head and I learned a lot, hence, my ability to share here with you what I learned.) Some of us are sarcastic, some no nonsense, some funny, some caregiving, but ALL are well meaning with the primary aim to help. You're not seeing the communication, only reading it, so it's easy to misunderstand. Besides, Jan keeps a close watch on posts and those who are NOT well meaning are reprimanded. All posts here may not be what you expected but none is malicious. An honest, open dialogue is key to getting the help we seek. Hang in there, you'll get your answers!

Kelsey - so sorry for how you feel.  It is an awful feeling to think others are judging you when you post on this site - whether the other writer intended to or not - this is what you felt.  I am a counselor- so step one for me is always really hearing what people are saying and validating "i hear you."  I need that in my life and I have a few people who get that and as some have said, others I just had to let go of.  I do have to cancel things at the last minute at times and I feel guilty and then I beat myself up for feeling guilty and then I go - why the hell do I feel guilty?"  I'm truly sorry you didn't feel supported - when you are in a down phase, you just need support.  Clearly, you are doing all kinds of amazing things with your health (a lot more than I do!) and you are also dealing with PCOS  - that's a lot!  I must say - I've had the pouch and issues for 30 years and really don't feel anyone understands except someone else who has it.  I never did give a pamphlet or book or anything to people - and looking back - I should have given at least something to my employers (after I was hired!!) - because I suffered a lot at work trying to hide it.  There was a period in my life about 7 years? 6 years back - when I was so angry about all of it and a bunch of other stuff that nothing anyone could say or not say helped.  It was a really low point and it lasted longer than I care to admit.  But, I did come through it - and I hope you are ok and I hope you won't stop coming on here for support.  I think people mean well - I also think sometimes the guys (no always - so please no one say I'm being sexist) - but I think they process things differently and perhaps women are better at being supportive in many cases.  I care for your health and happiness as I care for anyone struggling out there - especially with this.  And this (the pouch) can lead to all kinds of depression/anxiety etc. - it certainly did for me - but not at first - it was later...and I got help for that.  I hope you won't be mad and think "well, now she is talking about herself and not me" - I am just sharing my story and telling you feel free to write what you want and don't worry if you get some answers that rub you the wrong way.  I do think people are trying to help - they just may be at a different place in their journey or they may cope differently or need different things.  For me, being alone more (not isolated, but much more solitude than in the past) has been wonderful.  I found more time to be home, put less pressure on myself to be social all the time...I pick and choose and if the friends go - so be it.  Thanks to you and to all who post on here.  We are all in this together.  Sorry so long - I'm a yapper.  My husband has zero interest in listening to me about any of this anymore - he will do it because he loves me, but I try not to bug him with it too much - he's been through too much of this with me already. I try to find others to lean on - not just him. Thus, my ramblings on here.  Please take care and write back if you feel like it....if you feel angry at anything I said - it won't bother me - maybe you need to feel it and get it out!