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RAstarlight
02-28-2015, 03:34 AM
Hi all!

I'm looking for women to share their stories of the road up to diagnosis with an autoimmune disease, and how they deal with it. There are tons of them, but some of the biggies are:

Lupus
Scleroderma
Celiac
Multiple sclerosis
Crohnís disease
Rheumatoid arthritis

Thatís a short list, because there are more than 100.

I also wanted to ask if anyone here has ever used internet message board forums to find interview subjects? With the moderatorís permission, of course. Iíd think that would be a great source to find people eager to share, but Iím not sure of the ethics and etiquette of that.

Thoughts?

Thanks for any help!

Usher
02-28-2015, 04:02 AM
I have ME so I don't know if it is autoimmune or not. However, my symptoms are very similar and you may find this a useful resource:
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

RAstarlight
02-28-2015, 04:54 AM
Hi Usher, thanks for responding! Is ME for myalgic encephalomyelitis? If so, I do believe that is an autoimmune disorder!

Thanks for the link - I have rheumatoid arthritis myself, so I'm familiar with the "spoon theory" - I often joke with my husband that I'm out of spoons for the day. ;)

If you want to discuss your condition, let me know - if not, that's understandable as well. Thanks again for replying. :)



I have ME so I don't know if it is autoimmune or not. However, my symptoms are very similar and you may find this a useful resource:
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Cath
02-28-2015, 05:15 AM
I also wanted to ask if anyone here has ever used internet message board forums to find interview subjects? With the moderator’s permission, of course. I’d think that would be a great source to find people eager to share, but I’m not sure of the ethics and etiquette of that.

Thoughts?

Thanks for any help!

If you mean AW, one if the purposes of this little corner of it is for finding folks to interview. Otherwise, general discussion of the ethics of doing it else web, the Roundtable would be a better place.

With regard to your question, where will this be used?

Usher
02-28-2015, 05:21 AM
Hi Usher, thanks for responding! Is ME for myalgic encephalomyelitis? If so, I do believe that is an autoimmune disorder!

Thanks for the link - I have rheumatoid arthritis myself, so I'm familiar with the "spoon theory" - I often joke with my husband that I'm out of spoons for the day. ;)

If you want to discuss your condition, let me know - if not, that's understandable as well. Thanks again for replying. :)

Yes I just can't spell the full name ;) And I'm happy to talk about it. With my condition I just shrug -- I have no idea what it is or why does what it does. Somewhere along the way I lost all opinions I had about it and just got on with living with it.

RAstarlight
02-28-2015, 05:29 AM
Thanks for responding! I would definitely love input from people here in the AW - I figured this was the right place. :)

Regarding other forums, I'll take that question to the Rountable, as you suggested, thanks!

I'm putting together a query to pitch for an article, and for pieces like this, I like to find people who would be willing to share before going to an editor. So the purpose is to find people who would be willing to talk IF I get an assignment.

In other words, I'm open about the fact that I'm pitching a story, and that if assigned, I'll then get more info.




If you mean AW, one if the purposes of this little corner of it is for finding folks to interview. Otherwise, general discussion of the ethics of doing it else web, the Roundtable would be a better place.

With regard to your question, where will this be used?

RAstarlight
02-28-2015, 05:30 AM
Yeah, that's a mouthful to say - they really should give it another name! In any case, I'm truly sorry to hear you're going through it. I'll send you a PM.
Thanks :)


Yes I just can't spell the full name ;) And I'm happy to talk about it. With my condition I just shrug -- I have no idea what it is or why does what it does. Somewhere along the way I lost all opinions I had about it and just got on with living with it.

Usher
02-28-2015, 05:45 AM
I've had it 31 years now - life is actually weirder when I'm in remission.

Hip-Hop-a-potamus
04-03-2015, 03:42 AM
I have MS, and I've been living with it since 2005 (diagnosed when I was 38).

I'd be happy to talk about my experiences. PM me if you like, or you can email as well. :)

boron
04-03-2015, 01:00 PM
You just register on an appropriate forum and ask directly and openly what you want. Many people are willing to share their experiences. It's good to get stories from different people because diseases in real life are not so typical and uniform as you may read on some health website.

It works better if you go to specific forums, for example, sjogrensworld.org, than to a big forum, like medhelp.org