Do you think it's in bad taste to use Christmas as an opportunity for Crohn's awareness?

[Pilgrim]

I've seen a few posts over the months which helped me (I'm a parent of a Crohn's kid) to have a better understanding of what my little daughter might be dealing with...they helped to build empathy. One of them was originally posted by a woman who suffered with Lupus. It was called the "spoon theory".

I was thinking of maybe finding something a little more succinct, and including it in our Christmas cards. Crohn's is widely misunderstood. Not anything meant as a sympathy grab, just thinking it might be an opportunity for spreading understanding.

Has anyone done this? Would you do it? Any good ideas? Is it in bad taste?

 

[astarks]

I personally love the spoon theory. I use it all the time to help my friends understand why I can't always hang out with them, even for stuff like watching movies that they think of as "easy."

For me personally, I would probably feel a little weird including it in Christmas cards...not that it's necessarily in poor taste, that's just my personal feeling on it. However, there's no reason for you not to send out a similar message at another time, not in a Christmas card.

Presumably, the people who you really want to understand would be either relatives or people who you see pretty often, so I don't think it would be in bad taste to send out a letter or mass e-mail with a message similar to spoon theory to those close friends and/or relatives, independent of holiday greetings, on your daughter's behalf.

And, based on your signature, I would say now is probably a good time to do it, while she's young. I know for myself, as soon as I was out of hospital and not visibly ill anymore (about age 13-14), I didn't want anybody to know that I was sick. So I went through more or less all of high school refusing to share my story with any friends because I didn't trust that they would believe me or take me seriously, which I didn't get over until I hit college. So if she grows up with people not only knowing but also able to understand her illness, it might give her a little more faith in people's reactions than what I personally had/have.

 

[The Real MC]

Don't use a national holiday like Christmas. Plan a non-holiday non-birthday party (strongly encourage they attend) and use that as the opportunity. That way family and friends won't associate an unpleasant topic with a holiday.

 

[Pilgrim]

Fair enough. We live far away from family and friends, relocated not too many years ago, but I could use the mail at a different time of year and not during a religious holiday.

Thanks for the feedback!

Pilgrim

 

[UnXmas]

I never get why the "spoon theory" is so popular. Why spoons? Why not something that signifies energy, like batteries, or something even vaguely to do with the illness in question?!

As for educating people in Christmas cards, I think that comes down entirely to your relationships with the people you'd be sending them to, and their and your feelings towards Christmas. If you want a more discreet way, maybe include a link to a website that you think gives a good explanation of Crohn's in your email signature, or write a website address at the bottom of your Christmas cards? Then people can look if they want to know, but you're not risking dominating a Christmas card which some people may feel should be kept to religious messages, or to positive, uplifting things? Plus I would check your kid's feelings about it.

 

[astarks]

UnXmas: You could use batteries if you wanted to. The item in question is sort of irrelevant. If you've ever read the original story behind spoon theory, Christine (the creator) explains it. She happened to be sitting at a restaurant at the time, and spoons were just something that were readily available to put in her friend's hands and use to demonstrate energy rationing in a tangible way. Then, when the story became so popular, everybody just kept using spoons.

 

[Catherine]

We have a family member who encloses a typed A4 letter updating as what her family being doing all year.

A mention of DD dx would have fitted in perfectly under her section in this format of Christmas correspendence.

 

[Pilgrim]

We've done that in the past a few times with a letter. They tend to be compulsively upbeat, but it's not a bad idea to put the info in the letter.