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

After giving it some more thought just now, I think maybe the word 'flare' is the hard part to grasp for them. To me, and all of us with IBD, 'heading into a flare' is very worrisome because we know what to expect ahead of us. The pain, the mucus, the blood, the urgency.

When we first became ill we didn't know this is what our future held... so now, knowing so, it scares the cr@p out of us. No pun intended.

So to try and be helpful I can think of only one thing at the moment that worked for me to explain to my family.

I said to them, think about how you feel 'inside' the moment you realize you have the flu. Think about that urgency to get to the bathroom, and how cramped up and painful your intestines felt. How tired and drained you feel. Now imagine that feeling never went away.... ever... every day you awake, is that type of urgency and general discomfort ahead of you. I asked them to imagine how this might effect 'their' lives.

It's the only thing I have been able to think of over the years that they can physically and mentally relate to.

U B Tough said...
"Accidentally" don't flush the toilet. Perhaps that will change their minds. (I'm not even kidding). Huge reality check.

Haha, I've actually thought of taking a picture of the toilet after each of my BMs in a day. Then show them the whole catalog of about 15 different pictures from that day and maybe that would shock them. I'm sure "normal" people have never seen half the stuff in the toilet that we see daily.

If they can induce colitis-like symptoms in lab mice, can we do that to spouses and family members who just don't understand?

Andrina said...
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.

Couldn't agree more. I'm sorry you have to go through the same thing. Yep, bitterness is kind of inevitable with this disease.

And wow, I have finally stumbled upon someone with misophonia?? Well I'll be. Not to change the subject, but I have felt very strongly for many years that I have misophonia. No one believed me about that either! It's relatively unheard of.

Dikid said...
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...

It says a lot that you don't allow them to come with you anymore. That's the extent to which outsiders don't understand it. So yeah, I do think that's a practical mindset. Hehe, I'm in the same boat as far as moving out. The thing is, I've never been in a rush to move out because I'm honestly afraid to be on my own, but it's things like this that prove it can be unhealthy to stay at home for too long.

GloGirl504 said...

And wow, I have finally stumbled upon someone with misophonia?? Well I'll be. Not to change the subject, but I have felt very strongly for many years that I have misophonia. No one believed me about that either! It's relatively unheard of.

Yep Misophonia isn't taken seriously. I can't survive without my headphones. I lost count on how many times I had to leave the dinner table. If you would like to talk more about it, you can find my email in my profile

Andrina said...

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.

Hahaha, true, true. I'm glad I can laugh at that.

quincy said...
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

Good choice of words, hehe. That's true, it really doesn't matter what they say. It's just annoying.

"just not the obvious symptoms" - Yeah, especially since I only bled a tiny bit one time and since then haven't had any blood. That's strange to me, but I'm getting most of the other symptoms I had before.

ushippedyourpants? said...
people can be real dopes sometimes - especially parent people !

Hahaha, indeed.

pb4 said...
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!

Yep, you got it. Not much I can do but frustrating nonetheless.

Canada Mark said...


So to try and be helpful I can think of only one thing at the moment that worked for me to explain to my family.

I said to them, think about how you feel 'inside' the moment you realize you have the flu. Think about that urgency to get to the bathroom, and how cramped up and painful your intestines felt. How tired and drained you feel. Now imagine that feeling never went away.... ever... every day you awake, is that type of urgency and general discomfort ahead of you. I asked them to imagine how this might effect 'their' lives.

It's the only thing I have been able to think of over the years that they can physically and mentally relate to.

ARRRRRRRRRRRRRRGH!!!!!
Now...this is *&*^%*#&*(# irritating to me when someone who posts extremely in depth, scientific, and difficult to understand information still uses the term FLU for gastro illness to describe how UC feels like.

Really Mark? Please...they'll just think well, maybe they'll just get a flu shot to prevent it!
Very, very helpful indeed.
q

quincy said...
ARRRRRRRRRRRRRRGH!!!!!
Now...this is *&*^%*#&*(# irritating to me when someone who posts extremely in depth, scientific, and difficult to understand information still uses the term FLU for gastro illness to describe how UC feels like.

Really Mark? Please...they'll just think well, maybe they'll just get a flu shot to prevent it!
Very, very helpful indeed.
q

It's not that bad an analogy. I've never had a case of cold or flu which made me have diarrhoea, urgency or abdominal pain, but the fatigue part is spot on. One out of four is right, so it could be worse.

Frankly I think the only way for somebody to truly understand is to experience it for themselves. One or two days of norovirus is no good here: it'll be forgotten after a week. For me at any rate, it's the long-term aspect of having a chronic disease which has truly ground me down. It wasn't something I could have anticipated at the beginning, but over the years I find myself getting more and more tired of this sh!t. I also started out with very mild symptoms and took that for granted - I was like, 'what's so bad about having Crohn's??'. Then when I found out what was so bad about having Crohn's, I was like 'what's so bad about having UC??'. Then I developed proctitis and found out what was so bad about UC. It's actually not any easier than having Crohn's. In some ways it's worse.

ncot...no, it is a bad "anal"ogy because flu is respiratory, not gastro. In this day and age, it should be a known term already.

People used to refer to the stomach flu, but I'm not sure if that term is used anymore. Any time an outbreak of norovirus does the rounds, the people I know usually refer to it as the winter vomiting bug, or whatever.

Completely agreed that flu is respiratory and not gastro. However, the resulting fatigue and fevers which can accompany IBD is flu-like. I suffered from it for enough years and, to a lesser degree, am suffering from it all over again. If IBD is mild or in remission, then you won't have that death-like feeling.

We don't know till we experience it, true, but to me a flare was never like that except the extreme nausea part, ugh.

Well that's exactly what a severe flare-up can be like - even worse if you are in a world of pain. Also, no offense, but you've been in remission the majority of the time. Fair play, but you have no idea how debilitating it is to never be in remission. Try imagining never being in remission for 13 years and, for the majority of that time, also having severe disease.

PS: Nobody is lucky to have either UC or Crohn's. If you were 'lucky' at all, I would have said it because the mildest meds - the 5-ASAs - work so well for you and have kept you in remission for years. The Crohn's folks at the CCFC meeting shouldn't have called you lucky without knowing anything about your history. Bear in mind that at least some of them have probably been through years of pain, surgeries, extremely limited diets, etc. though.