HealingWell
Search Close Search
☰

What do you do when your family doesn't get it/believe you?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/26/2015 4:24 PM (GMT 0)
*edited because I told my mom to do some research and if she ends up on the forum, I don't want her to see all the details!* Question still stands, haha.

Post Edited (GloGirl504) : 12/29/2015 5:54:01 PM (GMT-7)

Posted 12/26/2015 4:42 PM (GMT 0)
This is why i don't make my parents the primary people with whom I speak to about my UC. I come here and chat with the community. People who don't have UC will never understand. A few times I've run to the toilet while with my family and they dismissed it, as if I was exaggerating. They said things like "oh come on, it can't be that bad". It was pointless with my family, they don't get it. Not to say you should give up, but feel free to vent here, we understand. Do your best to guide them to resources where they can become more aware. I've tried to do this with my family but they don't bother to spend a few minutes learning.
Posted 12/26/2015 4:44 PM (GMT 0)
I was going to say take them to the doctors with you but you've done that.

Do you still live with them? That I'm sure makes things harder if you do. If you don't I would just say I'm sorry you don't understand how serious this is. It is life long and not just going to go away. If you can't support me then please just refrain from making comments at all.

My husband took awhile to get it. He didn't say things like that but I think he thought it would go away and I would be fine. I'm in remission from my UC buy my IBS has been acting up and it's frustrating to him when I say I just can't go there because there is nothing I feel like I can eat.
Posted 12/26/2015 5:29 PM (GMT 0)
Over thanksgiving I was supposed to go to a football game/all day drinking excursion with my brothers. As the time was nearing I was telling them I probably wouldn't be able to go.

The day before the game, I was at my moms house(I was staying there over the Holidays) with her, one of my brothers and his wife. My mom, who has been great for me through this whole thing, was telling me I should try to go and she feels bad that I am missing out on stuff like this. She kept saying I should go, I should go.

Eventually I just told her that she doesn't get it and went into explaining exactly what I was going thru on a daily basis without holding anything back and going into detail. Halfway thru she started covering her ears and I told her to stop and that she was going to listen. I think after that it really sunk in for her and my brother how bad this disease can be.
Posted 12/26/2015 7:39 PM (GMT 0)
Sorry to say, but sometimes people pretend not to get it, it frightens them, or worse, it inconveniences them, they think by jollying you along that you might just snap out of it, feel better, are better, and then you can all trot off for a slap up meal at some restaurant.

I think its a mixture of that, and not wanting to face what is happening to a loved one, a kind of denial if you like.
Posted 12/26/2015 11:02 PM (GMT 0)
Yes, it's denial bigtime, and it's a form of passive aggressive behaviour.

You could do the route of all the details you live with regarding UC, pooping, cramping, bleeding, medications, side effects, etc....

But your first defence is to never, ever, ever accept any degree of belittling....and say to that person that their advice of caring is actually more of a brush off than a help. In their defense, they don't want to know or probably feel responsible and/or helpless.

Have you not asked them why they say that? Because if you haven't, maybe it's time for you to allow them the opportunity to say what's actually on their mind.

Some people also don't like to see others sick or know how to respond in an appropriate way. For some, there's never an appropriate way, so satisfaction will never find a place in that kind of relationship.

Ask if they get it or if they want to. It might open a door that you welcome.

q
Posted 12/26/2015 11:53 PM (GMT 0)
Uc is an invisible disease, you look perfectly healthy on the outside, and most of your troubles occur in the privacy of your bathroom. It's frustrating when others brush it off.

I'd try to be frank: toilet full of blood, painful to hold bms, a dozen or more very urgent bms a day, discomfort, accidents, anxiety, no longer trusting your body, even depression at times. Uc isn't trivial rather it's life altering.
Posted 12/27/2015 12:04 AM (GMT 0)
My parents not believing me has left me very bitter. I realized that I'm very bitter about having this disease in general. I'm only 30 and I shouldn't be so sick. I shouldn't have issues with my bones. I shouldn't have issues getting sick all the time. I got sick when I was 17. No teenager should suffer like this. My parents didn't believe me and told me comments like it's just something you ate or you just don't want to go to work, basically accusing me of being a hypochondriac.

Anyways, I don't have a good advice for you except ignore them and do your thing. It's your health, your body, your life. You have all the right to make sure you're well.
Posted 12/27/2015 12:09 AM (GMT 0)
I had a go at my sister-in-law on Christmas Day. She was talking in great detail about a work colleague who has Asperger's and Crohn's. First she went on and on about his physical appearance, then she moved on to how he faked stomach aches to get out of work. I told her immediately she didn't have a clue about Crohn's. The thing is, she's the partner of my brother who also has Crohn's. Except his is almost the mildest case ever - he has a flare-up for a few weeks then is in remission for years at a time. So I think she judges every Crohn's case by my brother's, probably including mine.

To be honest, the only reason I didn't say more is because it didn't occur to me at the time, not because I was worried about offending her. She didn't even apologise - just kept on justifying herself. Maybe she was right, but the thing is, I don't actually care if she was. She's clueless, absolutely clueless, despite being the partner of somebody with Crohn's for 15 years.
Posted 12/27/2015 12:16 AM (GMT 0)
Yup it sucks when families don't get it.
Mine doesn't and acts as if I'm a hypochondriac. I try to minimize telling them things but sometimes it's hard to not share what is going on in your life escpiecially when it's the people who we feel should be most supportive of us.

I did explain exactly how I feel and how insensitive they are being and it didn't help. I am not going to allow them to accompany me to scopes etc and I don't explain what the doc says at my appointments. I don't want more of them calling me a hypochondriac. And although it's hard they are not being as annoying about it

I have gotten to the point where I don't give a darn when they think because they are obviously clueless and ignorant about what we go thru. I don't know if it's a practical way for you to think but it might work.

Moving out might be good for you, I can't right now as I cannot afford it in any way. School is already expensive enough...
Posted 12/27/2015 12:19 AM (GMT 0)
My favorite one is "why can't you just hold it, like an adult?" From my DW *face palm*. She gets it better now but jeesh... We've all been there.
Posted 12/27/2015 12:49 AM (GMT 0)

iPoop said...
My favorite one is "why can't you just hold it, like an adult?" From my DW *face palm*. She gets it better now but jeesh... We've all been there.


Maybe we're all just babies. After all we even wear diapers at times.
Posted 12/27/2015 12:59 AM (GMT 0)
We are the invisible disease, although there are others, because it's yucky to talk about and no one wants to hear the details. We know the urgency and the shame of loss of control and the lack of sympathy from others who have much more empathy for other types of illness.

It's probably a bit like soldiers who've been through combat. They are bonded even if they never knew one another because they have shared similar fear. But having said that, one of the least empathetic people I ever told about my UC was someone who had UC and had surgery to remove her colon. God knows why but she was one of the most cold-hearted people. She has since had 2 kinds of cancer (not colon obviously) and I have nothing to say to her.

You learn who the nice people are.
Posted 12/27/2015 2:30 AM (GMT 0)

notsosicklygirl said...
This is why i don't make my parents the primary people with whom I speak to about my UC. I come here and chat with the community. People who don't have UC will never understand. A few times I've run to the toilet while with my family and they dismissed it, as if I was exaggerating. They said things like "oh come on, it can't be that bad". It was pointless with my family, they don't get it. Not to say you should give up, but feel free to vent here, we understand. Do your best to guide them to resources where they can become more aware. I've tried to do this with my family but they don't bother to spend a few minutes learning.

Your family sounds like mine; back when I tried to get my family to read some articles about a mental condition I felt I had, they wouldn't take the time to do it. Of course, that was more self-diagnosis whereas this has been officially diagnosed. So they really have no excuse. I'll definitely take advantage of that offer to vent here!
Posted 12/27/2015 2:47 AM (GMT 0)

sherbear46 said...
I was going to say take them to the doctors with you but you've done that.

Do you still live with them? That I'm sure makes things harder if you do. If you don't I would just say I'm sorry you don't understand how serious this is. It is life long and not just going to go away. If you can't support me then please just refrain from making comments at all.

My husband took awhile to get it. He didn't say things like that but I think he thought it would go away and I would be fine. I'm in remission from my UC buy my IBS has been acting up and it's frustrating to him when I say I just can't go there because there is nothing I feel like I can eat.

Yep, I still live with them. Oh man, I can definitely relate to the remission-but-with-IBS deal.
Posted 12/27/2015 3:08 AM (GMT 0)
*edited because I told my mom to do some research and if she ends up on the forum, I don't want to hurt her feelings...*

Post Edited (GloGirl504) : 12/29/2015 5:52:17 PM (GMT-7)

Posted 12/27/2015 3:20 AM (GMT 0)
Tell her to mind her own arse.

You have a choice...once you own your own issues, it doesn't matter if others get it.

The enemas help heal you...so OK, jump-start into healing, lol. And you're not heading into a flare, I would say you're in one...just not the obvious symptoms.

keep us posted.
q
Posted 12/27/2015 6:22 AM (GMT 0)
Maybe mom and dad are just trying to be hopeful. I know if my kid had it I would be so sad and try to stay positive and I am sure I would say all the wrong things. Parents are good at that!
Posted 12/27/2015 11:55 AM (GMT 0)
people can be real dopes sometimes - especially parent people !
Posted 12/27/2015 8:11 PM (GMT 0)
Your mom needs to mind her own business. I hope you did the enema anyway.
Posted 12/27/2015 8:55 PM (GMT 0)
It's sad that some parents act like they're in denial when it comes to their kid's health! It's usually one way or the other though, some are super freaks and will bug you to go see the doctor over everything whether it's big or little....just take it with a grain of salt, not much else you can really do, you can't control others, only yourself....but it is frustrating for sure!
Posted 12/28/2015 1:46 AM (GMT 0)

miestomaga said...
Over thanksgiving I was supposed to go to a football game/all day drinking excursion with my brothers. As the time was nearing I was telling them I probably wouldn't be able to go.

The day before the game, I was at my moms house(I was staying there over the Holidays) with her, one of my brothers and his wife. My mom, who has been great for me through this whole thing, was telling me I should try to go and she feels bad that I am missing out on stuff like this. She kept saying I should go, I should go.

Eventually I just told her that she doesn't get it and went into explaining exactly what I was going thru on a daily basis without holding anything back and going into detail. Halfway thru she started covering her ears and I told her to stop and that she was going to listen. I think after that it really sunk in for her and my brother how bad this disease can be.

Wow, she covered her ears? Jeez. My parents know about the worst/most humiliating part for me: accidents. There's not much more I can share with them that will convince them. I tell them how letting inflammation linger increases the chance for cancer, yet they're still anti-medication when it comes down to it.
Posted 12/28/2015 2:23 AM (GMT 0)
"Accidentally" don't flush the toilet. Perhaps that will change their minds. (I'm not even kidding). Huge reality check.
Posted 12/28/2015 2:25 AM (GMT 0)

Poppie said...
Sorry to say, but sometimes people pretend not to get it, it frightens them, or worse, it inconveniences them, they think by jollying you along that you might just snap out of it, feel better, are better, and then you can all trot off for a slap up meal at some restaurant.

I think its a mixture of that, and not wanting to face what is happening to a loved one, a kind of denial if you like.

I think you hit the nail on the head. That's exactly what it seems like.
Posted 12/28/2015 2:38 AM (GMT 0)

quincy said...
Yes, it's denial bigtime, and it's a form of passive aggressive behaviour.

You could do the route of all the details you live with regarding UC, pooping, cramping, bleeding, medications, side effects, etc....

But your first defence is to never, ever, ever accept any degree of belittling....and say to that person that their advice of caring is actually more of a brush off than a help. In their defense, they don't want to know or probably feel responsible and/or helpless.

Have you not asked them why they say that? Because if you haven't, maybe it's time for you to allow them the opportunity to say what's actually on their mind.

Some people also don't like to see others sick or know how to respond in an appropriate way. For some, there's never an appropriate way, so satisfaction will never find a place in that kind of relationship.

Ask if they get it or if they want to. It might open a door that you welcome.

q

I do think it's a lot of denial and not knowing how to handle it. And maybe I'm afraid of what their answer would be to those questions. I don't know. I just know that it's very frustrating always having to repeat myself and then questioning and second-guessing my actions.
✚ New Topic ✚ Reply
12