How to get the general public to understand MC

[desertrat]

What I want is to find a way to explain MC to uneducated people (which is everyone) in one simple sentence. I tried explaining it to someone a few days ago and I saw the glazed look about halfway through and knew I had lost them and their interest.

So, is there a simple way, in one sentence or two, to explain MC to people so that they are: A) not repulsed by the D part, B) explained in terms that maybe they would correlate/understand/associate with another disease and C) will not require me to explain in vast detail my symptoms (which they don't want to hear, anyway!)

So, to all the PP here, what would you say?

MC is a.............

Mandy

[kitty16]

Hi,


I just tell people I have colitis. Most people seem to know what that entails. If they ask more questions then I try to explain the name of it and symptoms, but you are right most don't.

Hugs,
K

[tex]

Or you can mention that MC is like celiac disease on steroids.

Tex

[Gloria]

I also tell them I have colitis. If they still don't get it, I tell them that I have intestinal problems. Then they usually understand. I don't have any pain with my MC, however. If I did, I'd probably say that it also causes a lot of pain in my gut.

Gloria

[Sue777]

I, too, just refer to it as "colitis" but I am shocked at how many people say to me "what's that?" I know our form is rare, but not knowing what colitis is? At first I'm surprised, and then I'm annoyed, and then I'm jealous. Can you imagine not even knowing what colitis is??????

So to that I respond "an inflammation of the colon" that causes me to not be able to keep much food in me for very long.
Sue

[MaggieRedwings]

I have pretty much given up on saying colitis since everyone says to me - "Oh that is just a minor problem with digestion." If I tell them Celiac disease, they seem to get the picture.

Maggie

[fatbuster205]

I say colitis but if they don't get that I say imagine the worst stomach you have ever had - I live with that daily!

[shona]

I say colitis as well, and have explained with inflammation of the colon if they hadn't heard of colitis.

There was a good PR campaign on TV here in Australia for a while last year, run by Crohns & Colitis Australia. Here is the TV ad: http://www.youtube.com/watch?v=DToSSfhZ ... r_embedded

I'm sure it went a long way to public awareness of colitis, although I think a bit more detail in the ad would've been great.

[Zizzle]

I mix up my answer, depending on the sophistication of the audience, but it's usually something like, "I have a mild inflammatory bowel disease and severe gluten intolerance." I say mild IBD instead of colitis, because I don't want people thinking I'm bleeding, might need surgery someday, etc. I tie it to the gluten intolerance so they know it's all the time and forever, unlike UC which can go into remission.

[carolm]

I have explained it as -- "you know how arthritis is caused by the immune system attacking the joint?. In my case the immune system has decided to attack my entire GI tract." At this point they usually cringe. Then I go on "So it causes a lot inflammation, nausea and digestive problems, and I have many food sensitivities".

Seems sufficient-- maybe too much information, but generally I'm not embarrassed to say it. A common analogy helps.

Carol

[humbird753]

I have only told a few people I have colitis. I have always gotten the same confused and disinterested looks from the few I have told. So, rather than telling others I have colitis I just say I am gluten intolerant. When I think about it, how can I expect others to understand something I never heard of myself until I was diagnosed with it in 2010. And... even now I don't think I fully understand it. We have to remember that most GI's don't even get it!

So - there is this forum I find understanding with....

Paula

[Zizzle]

I have only told a few people I have colitis. I have always gotten the same confused and disinterested looks from the few I have told. So, rather than telling others I have colitis I just say I am gluten intolerant.

So true. 90% of the time the focus is all about my crazy diet, so I usually only talk about my food intolerances and how sick I can get if I'm exposed. They don't need to know the details about my colon inflammation!

[natythingycolbery]

I vary my description of it, but currently it is this;

'I have a form of colitis that very little is known about by the medical professionals, but I can tell you that my immune system is attacking my colon, which means when I need the toilet I NEED THE TOILET!'

Or, when someone told me I was overexaggertating my MC....

'So it isn't an issue that I feel lethargic most days, Have days where I visit the toilet 10+ times and usually in quick succession, when I can't sleep because symptoms keep me awake, when I can no longer eat the foods I love because they make me sick, where I am constantly embarrased and annoyed by the gurglings and stuff, you are telling me that I'm not ill?? Oh would you like this illness for a week and then you'll be amazed at how much I don't complain about it!'

[Deanna in CO]

I sometimes just tell people I "have intestinal difficulties." Other times, when I feel like it's appropriate to go into a little more detail, I tell them I have too many white blood cells in the lining of my intestines, and it causes me chronic intestinal trouble. That seems to satisfy most of those who want a more medical explanation for it. (It's not enough for those who don't comprehend the significance of "intestinal problems," but some of those people will never hear enough.) I've also told people that when I was using the restroom 10-12 times per day, often waking up at night, was when I finally got desperate.

Deanna