Possible website idea

[catfud]

One thing that I read about time and time again on here is people having trouble with those around them understanding their condition. Family members say things that upset you, or they try to help but in turn can actually make things more difficult for you.

There is lots of information out there on crohn's but there seems to be an underlying issue that if you haven't got crohn's, you don't 'get it'

These two threads got the idea rolling. (i'm sure most of you have already read them)

I need help dealing with family

http://www.crohnsforum.com/showthread.php?t=4542

Nobody understands

http://www.crohnsforum.com/showthread.php?t=4602

I'm thinking about creating is a website dedicated to trying to help friends, family and loved ones slip into the shoes of someone who has crohn's and the difficulties faced in simple day to day activities. A sort of bridge between cronh's suffers and the people around them.

Basically in a nutshell a website you can send someone that doesn't 'get it' to and the website helps them to understand all the problems we face, so they can better support us.

I have a few basic ideas but would love feedback to whether you think this is worthwhile or have any ideas or know of anything out there that already does this well?

My meds are hitting me hard today I'm having lots of trouble typing, concentrating and explaining my thoughts well. Sorry if this sounds like mumbo jumbo!

 

[soupdragon69]

Hey Lee,

Can see where you are coming from with this...

One of the things we try to do here is include everyone on the site. You will find wives, husbands, partners, parents etc all asking for help and receiving it.

Perhaps it might be an idea to rather than create a complete seperate website to actually have a new section specifically for family members and friends with all the basic info and extras the forum members could contribute??

Would be a lot less work for you and also keep us all together..

Am sure alot of folk will have thoughts on this one along with Mikeyarmo and the other mods too.

Hope you pick up as the day goes on - know the feeling very well.

Thinking of you.

 

[MINI Cooper]

I think it's a great idea. Certainly couldn't hurt!
I also get frustrated with people who just don't understand.
If you need help with graphics or anything, let me know.
Before being stuck on disability, I was a graphic designer.
I'm ridiculously sick, but I have lots of free time :ybatty:

 

[ttyon]

I think it's a great idea, and it would be better than a new forum here, because it has to be easily accessible for people outside the forum. A standalone website would be better because people could just go there and read it, instead of browsing a forum. I think that would be easier for them, and making it as easy as possible is important when they're already hesitant to find out.

 

[drew_wymore]

I started ibdbloggers awhile back for that purpose, for people from here to tell their story in another way via blog so that perhaps people outside our little world would have a chance to understand what it's like being chronically ill. It's really not easy when you can't see what's wrong since it doesn't really present on the outside.

 

[catfud]

Thanks for all the feedback so far!

I'm still toying around with early ideas. I know what I want the website to do and be about, its just figuring out the 'how' at the moment. Will post my ideas for the 'how' at a later date to see if you think they would work. Again all ideas and feedback welcome!

Sort of aiming for an online leaflet so to speak, not to bombard the visitor with too much information but enough to give them an idea of how we feel each day. This information can then be compiled into a PDF that can be downloaded/ printed passed on to who ever.

I know that you can't change everyone but even if it only helps a few people to open up their eyes a smidge id deem it worth while.

Will have a links page pointing here (love these forums!) and to any other useful sites. drew_wymore if you give me URL for your blog I can add this in too.

Hey Mini if things start going a head I'm sure I'll be bouncing ideas of you and asking for help

 

[GoJohnnyGo]

"Kids and Crohn's" certainly is a category that can stand on it's own. We see parents visit here more often than the teen-and-under set. I'm sure kids themselves have questions, and could use resources specifically tailored for their level.

It's absolutely heart-breaking to read of little ones -- 7, 8, 9 years old -- afflicted with the disease.

 

[drew_wymore]

It's absolutely heart-breaking to read of little ones -- 7, 8, 9 years old -- afflicted with the disease.

x2 ... makes me want to cry ...

 

[teeny5]

I think it is a great idea.