Do family & friends always understand CD or how you feel?

My husband is for the most part supporting, but there are times he comes off like he is annoyed.  I am grateful for the times he does help me.     My daughter has a hard time accepting the fact that I am sick, so she often separates herself from my sickness.  She doesn't like to talk about it and often will cut me off if I start talking about how I feel.  My son, on the other hand will ask me how I'm feeling and accepts it when I tell him I don't feel well.   I try not to get into it, or be a pain in the a**  to them.   I love them all.  Even my friend's who stick by.  I know how difficult this is for them.  They are all different and their reactions are different. 

Just interested to know how families of other CD members react?  Is it all positive, or are there some less than positive reactions for you as well?  

My husband is sympathetic but he doesn't really "get" it, especially because I try not to complain a lot, but then he doesn't know how bad I am feeling.

My husband is very supportive, and my adult children are supportive, though I don't talk about day to day symptoms with them very much. The person I have the hardest time with is ME! I get so sick of endless GI complaints(even if I'm only complaining inside my own head)....I'm in remission with my Crohn's and doing relatively well, but my IBS is a daily challenge and I get so sick and tired of having to even think about GI stuff. I would love to go on an all day outing or to work or a movie without having to even think about bathrooms. But in answer to your question, some people are naturally more empathetic than others.....we all have our strengths and weaknesses. Just pick and choose who to share with according to their ability to support you and try not to be angry at those who don't get it, unless they are just plain mean. That's my thoughts anyway!

Thanks for sharing everyone. It does help to know that others share my experiences with family.
There are some things I can't hide from them. like my constant trips to the washroom both at home and in the stores. I don't have to tell them anything or sometimes I do need to say something if we are on the road?. Or sometimes pain tells many words by the look on my face or when I'm lying down, they all figure it out. I don't go into daily detail. I don't want them to know all the time, yet there are times I do say something, if a friend or family member invites me out to eat, and at the time I can't look at the food, let alone eat it, then I decline their invitation. Most often I feel I owe them an explanation, so I may say something, that I'm not doing so well. Sometimes I do say something when I can't make supper because I'm that drained from running to the washroom. Sometimes I do it anyway. It's true, at some points during the day I may have an hour or two, where it is seems better and I muster up my strength, only to be followed by hours of not doing so well. CD is an unpredictable disease from one day to the next.

Lol, think they are all there to help us in their own way, even those who come off sounding like they are criticizing or look or sound annoyed.

This is a sore subject with me, to be honest. Everyone who answers these threads always seems to have caring family, which makes me feel even more bitter than I already am. No, nobody understands. I never got married, didn't have enough social skills to meet anyone to get married. No children either, obviously. Nobody understands what it's like to be in my shoes. They certainly don't understand what it's like to have ASD, Crohn's, depression, or anything else which doesn't affect them. More to the point, they don't seem to know or care that they don't understand.

Post Edited (NiceCupOfTea) : 7/31/2015 10:27:45 AM (GMT-6)

Dorri, even on an internet forum, I feel invisible 95% of the time. It literally feels like there is no point to my existence: it's not like I even matter to anyone. If I'm ill, it affects nobody. Apart from me.

Edit: Sorry, today is not a good day. The aftermath of the operation is still kicking my butt, for one thing... :-/

Post Edited (NiceCupOfTea) : 7/31/2015 10:59:21 AM (GMT-6)

You are NOT invisible NCOT! I'm so sorry you are having such a rough time. You are right that it has been especially hard for your because you are more isolated, but I'm hopeful that you will recover from this surgery and life will change for you. Even those of us with loving families still feel isolated from our own illness....I know it's not the same. I care about you very much!

Thanks, dorri and gumby! ;_;

BRelaxed - Yeah, I have the same sort of problems as you. Only in my case I have to explain Crohn's, ASD (autism spectrum disorder), long-term unemployment, and lack of any previous relationship experience. I've thought about dating sites, but I'm literally clueless about what I could actually put in a dating ad that was a) truthful and b) wouldn't scare everyone away. It's a moot point for the moment, since I don't actually feel well enough to date yet. In a year's time, maybe.

*hugs* :p

You're too hard on yourself BRelaxed...your posts come across with a great personality!! I, on the other hand am a pro at rubbing some people the wrong way, as they do me as well at times, but I think anyone that has a personality has more than just one, some people only put their best foot forward and some will wear many hats.

Brelaxed... You said 'I can never be the person who I was anymore'. I so recognise that. I feel there was a me up to 32 and a different me from 32 onwards (conveniently I first had symptons around by 32nd birthday and was diagnosed exactly two years after ... So I can split my life quite neatly!). I have come to terms with the fact the old me has gone ... And I just try to make the new me (which is dominated by IBD) half interesting and fun to be with. It's hard. I know I'm not an easy person to live with - but hey who is.

The new me isn't of my choosing but I'm trying hard to mould it into someone that isn't solely about this disease. It's an uphill struggle but I'm not giving in!

It doesnt always work that someone else with a chronic illness can understand. I was with my ex for 7 years, when I mety him he had UC, shortly after we met I was diagnosed with crohns. I was very ill, I piled on wait through steriod use, and after 7 years he dumped me saying he felt like my carer and because of my weight gain I was unattractive. He forgot all the times I had cared for him when he was ill.  I went on to meet a man who was super fit, trains at the gym everyday. He took me on with all my health problems and 6 weeks after meeting he spent a month caring for me after major surgery. Two years later we are married.

I am a great believer that there is someone for everyone, no matter what. My husbands loves me warts and all, and looks after me every day.

You are all more than just your illness, never forget that. Everyone has something to offer others and something to give to a relationship. It might be you are kind, funny and a good listener. Dont ever think that there is no one who will understand, if someone loves you then they will try their best.