Why Are You Looking For Doctors?

[psawyer]

Despite the title, which suggests that discussion is welcome, this thread is an outpouring of bigoted hatred against an identifiable group. In Canada, this could be a criminal offense.

Not every doctor is evil. Not all priests molest children. Not every Jew is *****. Not every Catholic is *****. Not every black person is *****. Fill in the blanks as you choose. You can find bad examples in any group.

There are a lot of generalizations in this thread, to which I reply:

All generalizations are false!

I mean no disrepect to any people who are in the groups mentioned above, I just mean to cite some groups that have been the target of blind hatred in the past.

I expect to get flamed for expressing my opinion on this thread, and I just wish the whole thing would die. It has caused more than enough pain for a lot of people. Karen and celiac3270 have also expressed opinons that differ. We all have our experiences; just because they are different does not mean they are wrong.

[mouse]

I joined this forum this past summer, even though I had been receiving Scott's newsletter for over a year by that time. When I first starting reading the threads and the postings, I felt what a positive forum and I then joined. I felt that everyone was so kind, cheerful in the face of adversity and ready and willing to lend advice where needed. When I was down, I was always able to find a thread that would lift my spirits. This is the SECOND thread in a very short time that has taken members to task for their opinions and has not done so in a very nice way. What happened to this forum that we no longer are able to help each other, but throw anger and insults to those that do not agree? I use to recommend this forum to the people that my doctor sent to me (to get them started on shopping, diet, etc.). I will no longer do so, as some are elderly and would have a very hard time dealing with this anger, when they are trying to deal with a drastic life change. I really don't care if you decide to throw nasty remarks at me because of this posting. But, take a moment to reflect that this is really bringing this forum down. And when you go after celiac3270 who is one of the most respected members of this community you really put a lot of backs up.

[johanna]

Good post. People have a right to vent without being judged. Everybody gets angry and frustrated sometimes, and we don't need to be lectured for the occasional emotional rant. Most of us have had both good and bad experiences with doctors. It's really disheartening to have those bad experiences because we go in with expectations. We expect doctors to be compassionate, and so it's worse to get insensitive treatment from a doctor than it is from just a regular person. It's like insults from our parents v. strangers.

I'm omitting my bad doctor experience that I just typed out b/c I don't want to bring the board down. But recently I had a really bad experience with a doctor and definitely did my share of criticizing the U.S. medical establishment to my friends. One thing that helped me (b/c this doctor really committed malpractice and was terrible to me in not admitting his mistake or helping me afterwards) was to pray for the guy. I don't want to push my religious practice on anyone else, but it was helpful for me in not obsessing about the unfairness of the situation or how he had wronged me. I just prayed that he would be a better doctor whenever I thought of him and I kind of felt like I was washing my hands of the situation.

On a less serious note, anothing thing I do whenever something unfair happens is to think "Screw Zeus!" in honor of my dear college roommate, a celiac, who coined this phrase after reading some Greek myth where Zeus gave someone a bad fate and then punished her for it. This makes me laugh when I'm mad, so I thought I'd share.

[Rachel--24]

And when you go after celiac3270 who is one of the most respected members of this community you really put a lot of backs up.

Ok....clearly you are either overly-sensitive or dont understand that some people can have mature discussions....even with differing experiences or opinions. I was NOT "going after" celiac3270 as you put it. I've had discussions with celiac3270 in the past where we did not share the same opinion but as far as I know we have no problems getting along on this board. I think that you are misunderstanding my post. I also dont believe the people who've had bad experiences, such as myself, are the ones who are "attacking" others on this thread. This thread was, as far as I can tell, meant for those people who want to vent about their "not so great" experiences. If others simply cannot find it within themselves to be supportive or understanding of other peoples feelings they should not post on this thread. It is those individuals who seem to be throwing insults. I, like anyone else, am entitled to have an opinion re: doctors based on my experience. I dont see how sharing my experience with others who have gone through similar misfortunes can be even remotely seen as bigoted hatred.

First, I don't hate ALL doctors....I dont hate any race, religion, or whatever else you want to include. My feelings are not any different from someone who posts on this board that they had a horrible experience with a certain food company. People rant all the time because they were treated rudely by a rep. or were told something was gluten-free when it wasn't. People rant and say they hate this company for this reason or that reason and that we all should boycott because they got sick eating their chips or whatever. Well....I'm saying that I will no longer recommend, speak highly of, or step foot into a place where I'm paying good money for a service that I'm not recieving. I dont care whether its a doctor, a chef, a grocery clerk, whomever...I'm a human being and deserve to be treated as such. Just because someone wears a white coat and has M.D. in front of their name doesnt mean they deserve my respect. That is something that is earned and quite frankly treating me like dirt does NOT earn respect from me.

This is the SECOND thread in a very short time that has taken members to task for their opinions and has not done so in a very nice way.

I'm a little confused by this statement...isn't it you who came onto this thread and began taking members like myself to task. Arent you the one condemning those of us who don't share YOUR opinion. I have absolutely NO problem with you or anyone else who likes their doctors. I feel you are blessed....I'm not asking you to defend your right to be happy with your doctor. You can have your opinion and I can have mine....I'm done explaining myself to you....you obviously dont "get it".

[Rachel--24]

I would also like to add that I'm very disappointed in the fact that after participating on this board (in a positive manner) for 6 months I now find myself being attacked because I had horrible experiences with my doctors. Thank God that the people in my life are not so judgemental as those on this board. Thank God that the people in my life have compassion and shared my pain and frusteration while I went through this unpleasant experience. Believe me....those around me who witnessed how I was treated are not condemning me for having these feelings of mistrust. My feelings are warranted.

Also, take at look at the amount of views this thread has generated. Is this because soooo many people are put off by the negativity in this thread that they feel the need to keep reading? MAYBE its because *that* many people can relate to this thread and have had similar experiences themselves. I'd be curious if there were a poll to see how many people on here had good versus bad experiences with their doctors. I'm guessing most would vote for the latter...particularly those in the U.S.

JMO

[Guest mvaught]

Despite the title, which suggests that discussion is welcome, this thread is an outpouring of bigoted hatred against an identifiable group. In Canada, this could be a criminal offense.

Not every doctor is evil. Not all priests molest children. Not every Jew is *****. Not every Catholic is *****. Not every black person is *****. Fill in the blanks as you choose. You can find bad examples in any group.

There are a lot of generalizations in this thread, to which I reply:

All generalizations are false!

I mean no disrepect to any people who are in the groups mentioned above, I just mean to cite some groups that have been the target of blind hatred in the past.

I expect to get flamed for expressing my opinion on this thread, and I just wish the whole thing would die. It has caused more than enough pain for a lot of people. Karen and celiac3270 have also expressed opinons that differ. We all have our experiences; just because they are different does not mean they are wrong.

you just generalized everyone on this thread that has a doctor issue in order to lump us in the category as bigots and complain about our so called generalizations (which i think most who have posted complaining about doctors have cited at least one that was ok) - hmmm.

why do you care what we think about our doctors? were you there? were they your doctors? your experience? we are not trying to suggest that you should hate your doctors, but that we have been so frustrated with ours that it causes anxiety when attempting to find new ones - to have to go through it AGAIN and AGAIN.

it is offensive to call us bigots that should be penalized (as your this would be illegal in canada comment indicates). i am appauled. no one ever said that you have to hate your doctor - but don't tell us we have to love ours. aside, this is all about working through our feelings about doctors - there is validity in that.

why is it not okay with YOU that we share our experiences and emotions? rachel-24 is right, we are allowed to criticize sales reps, etc, but not doctors? ridiculous.

and it is not a generalization to express one's experence and voice how he or she feels about that experience. it is also not a generalization for someone who has only had bad doctors to say that all of their doctors were bad IF THEY WERE. again, it IS a generalization to call all of us bigots.

we that have compained about doctors were doing just that - YOU are complaing about US - what is the point in that? will that help us discover that there maybe is the doctor of our dreams out there somewhere? doubtful.

[debmidge]

I do not feel that what is said on this board constitutes "hate speech." That's stretching it somehow. A specious agrument at best. Pretty soon there will be, at least here in the USA, a website that shows what medical professionals were disciplined by their Medical Boards. And that would not be considered "hate" speach. As far as I recall, it's not against any law to tell the truth, and I don't consider doctors as a protected class of people, and that includes insurance agents and lawyers. If that were the case many people who told jokes about these groups would be arrested.

I am very, very disappointed in many of the people who have taken the time to make sure that the victims of bad doctoring are further humiliated and dismissed. Some of you appear to be doing this deliberately so that a squabble will erupt. Many of us are living with the errors and complications that had it not been for the time lost in diagnosis would have had more positive outcomes and a more positive outlook about doctors. Your lack of compassion for the victims appalls me. I find that some are in an "attack" mode and I can't figure out why they are repeatedly posting and just not skipping this topic. If the "negativity" bothers you, skip this board. Additionally, you're trying to talk people out of how they truly feel. And just because you disagree, this type of topic is "not bringing down the board" - you are, by disrespecting others' opinions, experiences and feelings.

If someone tells me that they've had a bad experience and are leary of the people who were at the root of the bad experience, I nod my head and try not to argue with them because I am not living their lives. What does it matter to me at the end of the day? I just take it with a grain of salt and busy myself with my own life.

I've said this before, don't spit in the wind.

Hugs Have a happy day!

[debmidge]

some additional thoughts:

I sometimes cry at night in worry over my husband's newly diagnosed peripherial neuropathy as it's progressing in his legs. This is due to the mis diagnosed celiac over 26 years. I ask myself, will he not be able to walk or drive the car? How will we live? I cannot afford to buy a home and get a handicapped ramp. We live on the second floor of in an apartment building. Where will my critics be then?

To Rachel: I have another designation for the "poor doers" - Medically abuse

Hugs

Have a nice day!

[Guest nini]

I'm really dissappointed that this thread has turned into a battle ground... Lets just agree to disagree and drop it. Let those of us who need to vent about our negative experiences with Dr.s do so in peace without being made to feel even more like dirt and like we have to defend our position.

All I'm going to say is because of medical incompetence I very nearly died, and am still dealing with constant pain and fatigue. I am trying to figure it out as best I can, and am trying to give my current Dr.s the benefit of the doubt, but it's so difficult after being treated like a hypochondriac for 33 years. I KNOW I was not being a hypochondriac, and the last 3 years prove that... I also know that I had to fight like hell for my daughter so that she will not have to go through the same crap I went through for all those years.

[aikiducky]

I haven't taken part in this particular discussion because my doctors suit me (I don't know whether they are good or bad, but they suit me ).

All I wanted to say was, VENT ON. You all have a right to your own feelings, and if it makes you feel even a tiny little bit better to get them out here once in a while, I say go right ahead. And for the people who feel disturbed by this, how about, instead of complaining and thus in fact increasing the "negativity" on this board - if you want the board to be a happier place, why don't you go and post something positive about your doctors. In another thread. How about a bit of respect for staying on topic. That's what new threads are for.

Basically, if I would sum up the discussion so far, it has gone like this:

"I feel angry."

"You really shouldn't say that."

Is that really how you want to treat other people?

Pauliina

[Canadian Karen]

I agree that the title of this thread does mislead alot of people into thinking that all opinions are welcome, when in fact, they are not.

I think I have figured out why this thread is such a bone of contention. In my two years here, I think this is the first thread that I have seen that has not invited all to participate. It is also the first thread that I have seen that if you have a view that does not fall within the "doctor bashing" view, then you are literally booted out of the thread and told in no uncertain terms not to come back.

I agree that venting helps to "get it off your chest". I agree that there are many (including myself) who have gone through hell and back to finally get to where they are today. I agree that many have had to claw and fight their way to a proper diagnosis. I agree that many of you prevailed against all odds and for that, I think you should be really proud of yourself. I agree there are many, many flaws in the medical system that need to be fixed.

I do not agree with the precedent this thread is taking. It has a "If you don't agree with us, get the hell out" message to it that I believe is not conducive to Scott's vision for this board. I may be wrong, but after reading the board rules, that is the belief I have........

The people who wish to doctor bash believe that their views and rights have not been respected. On the other hand, people who have wanted to inject another point of view, also believe their rights to their views have not been respected either.

I really, truly hope this thread teaches us a lesson.

Have a wonderful day!

Karen

[Rachel--24]

I think I have figured out why this thread is such a bone of contention. In my two years here, I think this is the first thread that I have seen that has not invited all to participate. It is also the first thread that I have seen that if you have a view that does not fall within the "doctor bashing" view, then you are literally booted out of the thread and told in no uncertain terms not to come back.

I don't think anyone would have a problem if someone were to post that they don't share the same opinion about doctors but have sympathy for those who have had bad experiences. I believe there are some posts on this thread that were truelly supportive even if not in agreement with the topic. What is not welcome on this thread are the comments meant to make us feel BAD for our feelings and our experiences. There are numerous posts which are intended ONLY to aggravate and cause further distress to the people who do not love their doctors. All of a sudden we are under attack and are being described as bigots, hate-filled people, and are being accused of bringing negativity onto the board.

I dont think this type of treatment should be permitted on ANY thread or topic on this board. I don't think THAT was in Scott's vision for this board. Its all about treating people with respect and I don't see that happening here. I see one group who is unhappy with the way they were treated by their doctors and another group who is "attacking" those whov'e already been victimized. It makes no sense to me.

We are trying to vent about our negative EXPERIENCES....in the meantime we are under attack from our own fellow board members who instead of offering kind words are name-calling and throwing stones. THAT is what is not welcome on this thread. Its been said in other topics recently "while its ok to disagree...it is NOT ok to be abusive or disrespectful to other members. Its not the topic itself thats bringing the board down...its certain members who feel its OK to attack those with different opinions.

YOU are complaing about US - what is the point in that? will that help us discover that there maybe is the doctor of our dreams out there somewhere? doubtful.

Exactly, WHAT is the point in that?

Despite the title, which suggests that discussion is welcome, this thread is an outpouring of bigoted hatred against an identifiable group. In Canada, this could be a criminal offense.

I am very offended by this remark and find it couldnt be further from the truth. You are lumping ALL of us into a catagory and calling us bigots...its these type of comments that are not welcome and can only cause the thread to go OFF topic into something that should not be occurring on a support forum.

Additionally, you're trying to talk people out of how they truly feel. And just because you disagree, this type of topic is "not bringing down the board" - you are, by disrespecting others' opinions, experiences and feelings.

Well said DebMidge,

This is what is violating the board rules....not the topic itself.

How about a bit of respect for staying on topic. That's what new threads are for.

Basically, if I would sum up the discussion so far, it has gone like this:

"I feel angry."

"You really shouldn't say that."

Is that really how you want to treat other people?

I think this quote sums it up perfectly.

[mouse]

I am not saying that most of us don't have a reason to hate doctors. And Rachael I was not referring to you about celiac3270. I am just a slow typist and you got in with your posting before I did. My first comments were that I just did not find this hatred productive and I thought I could say that without being called on my opinion. That is what I find wrong with this thread - not all opinions are welcome here. Do, I have a reason to doctor bash - YOU BET I DO!!. I just personally don't want to waste the little energy I have on doing it. And I am a firm believer in positive thinking will help my recovery. To each their own. But, I still think that all opinions should be welcome on every thread without people being hostile over the difference.

[teebs in WV]

I have been reading this post all along and chose not to participate until last night. My participation is strictly as an observer. Here is what I see:

1) The first post and the title invites comments/defense from people on this forum that are looking for doctors. Go back to the beginning and read the first few posts. If the first 3 sentences had been ommitted, then perhaps this post would have taken a different direction. If it had only begun with doctor bashing, and not questioning why there were people out there that were looking for doctors, maybe people would not have gotten so bent out of shape.

2) There were a couple of posts immediately after in which the posters commented that they were happy with their doctors. These posts did not attack, nor were they saying anything about the people who were bashing their doctors. The immediate response to these posts was - sorry - you can't post on this thread unless you are a doctor basher (or that is how I interpeted this). My bet is that this is what incited a few people and things started going down hill.

3) A couple of more bad doctor experiences were shared.

4) A doctor supporter, or a non-doctor basher - however you choose to view this - took a strong defense against doctor bashing.

5) 187 posts and ~3,000 views later may be due to the interest people have in watching the arguments - not necessarily that all of these people who have viewed this thread support the viewpoint of the topic. Naturally, any time there is a lot of activity, people are curious to find out what all the interest is about.

Lessons learned:

1) We need to be more tolerant of different views

2) It is very hard to convey your emotions well with only the printed word. Without the benefit of body language, tone of voice, etc., you often miss what people are really trying to say.

3) Next time something like this starts and if you don't agree with it - ignore it. I am talking about both sides of this debate. If there was no reply to when that first person posted that they were happy with their doctors, I wonder if we would be talking about this today? Would there be so many upset people?

I am strictly offering an observer's point of view. I am sure that others interpreted these exchanges differently. We are all different and special and I hope that everyone will take the time to reflect on what has happened, and make a conscious effort to let it all go.

There is nothing wrong with a good debate. But when people who are supposed to "be there" for each other start turning on one another, I think it is time to say "enough". In the famous words of Rodney King "why can't we all just get along"? (sorry - I couldn't resist)

[Canadian Karen]

YOU are complaing about US - what is the point in that? will that help us discover that there maybe is the doctor of our dreams out there somewhere? doubtful.

I can't speak for anyone else of course, but complaining about you (collectively speaking) is not what I was doing, I was disappointed that other views were not welcomed here.

I am also disappointed that, given the chance to actually DO something about it, most of the people on this thread have chosen to ignore my invitation to join a brainstorming session where we are trying to come up with ideas to change the system that has wronged you so much. The only message I get out of that is that given the chance to actually participate and channel that energy into something positive, most would rather just bury themselves in anger and accept the status quo.

I think so matter how much this is "debated", there are going to be fundamental differences of opinion. Those who equate doctors to guns (as stated in the first post of this thread) and those who believe doctors save lives, guns take lives. Can get much more opposite than that, eh?

I guess maybe I am an idealist, as someone called me (in a derogatory manner, but oh well.....) but I still believe that people can move mountains. The system can be changed. We should be coming together as a community to achieve that, not tearing each other apart. Didn't the civil rights movement start with one person, Rosa Parks, by refusing to give up her seat, thereby setting in motion something that eventually changed the world as we know it?

Have a wonderful day everyone! It's Daniel and Connor's 5th birthday today and we're off to see Care Bears Live!

Hugs.

Karen

[Rachel--24]

Do, I have a reason to doctor bash - YOU BET I DO!!. I just personally don't want to waste the little energy I have on doing it. And I am a firm believer in positive thinking will help my recovery. To each their own. But, I still think that all opinions should be welcome on every thread without people being hostile over the difference.

I consider myself to be positive as well. I chose to join in on this topic because I can RELATE to it...my experience just ended with me switching insurance plans as of the first of this year. My experience is still fresh and I wanted to discuss it here...with others who've had similar experiences. Its therapeutic for me to write out my feelings...its something I've always done. Here on this thread...I've felt I've had to constantly defend myself.

There are others who've dealt with their feelings differently or maybe enough time has passed for them to have "let go" of it. Its not fair for those individuals to tell ME I'm dealing with MY feelings in a negative or unproductive manner. In my life I make the best decisions I can for myself, my health and my future. Noone should be telling me NOT to have these feelings or to not let them out.

Yes, all opinions should be welcome here w/out all the hostilty. If you go back and read the posts you'll see that some felt the need to tell us we are WRONG for our feelings. Some people were telling us how we should be going about our own lives and dealing with our own issues. There is something wrong in that. I live in a free country and what works for you may not work for me...I'm free to deal with my feelings the way I choose. The remarks sent our way were uncalled for and put OUR backs up.

People continue to "pop" into this thread just to point out how negative or unhealthy it is. I'm sorry, but if that is your feeling then don't come onto the thread. For me its healthy and perfectly natural to want to share/vent my experience. This board is FULL of posts having to do with negative experiences. The next time someone says they wont risk eating out anymore because all resteraunt staff members just cant get it right....should we start blasting these people and tell them they are bringing the board down with their negativity? Should I say "I eat out ALL the time w/out incidence so quit your whining and don't bring down the board?" I think not.....that would be very unsupportive and it would also be upsetting to the person coming on the board looking for comfort.

Thanks for your post and all opinions are welcome as long as they are not offensive and hurtful.

[Rachel--24]

I am also disappointed that, given the chance to actually DO something about it, most of the people on this thread have chosen to ignore my invitation to join a brainstorming session where we are trying to come up with ideas to change the system that has wronged you so much. The only message I get out of that is that given the chance to actually participate and channel that energy into something positive, most would rather just bury themselves in anger and accept the status quo.

I don't know that these people are "burying" themselves in anger because they didnt partake in your idea. I have actively posted in this thread but in my life I'm definately not burying myself in anger. This was just a place to vent my frusterations....to say that the doctor issue is consuming our lives or causing us to be unproductive hateful people is quite an assumption that some people have made.

You cant assume that the people posting on this thread are not doing positive things in their lives. You dont know that. You cant assume that we havent taken this experience and learned from it and use those lessons learned in our daily lives. I, for one, have changed immensely due to this experience. I think I've changed for the better and have more compassion towards others now. Just because someone didnt choose to write a letter to the insurance companies, as you suggested, doesnt mean they are sitting home wallowing in hate. Its these generalizations about us that are unfair and unwarranted IMO.

[Guest nini]

I consider myself an extremely positive person and am always trying to help people especially newly dx'ed celiac's to learn to live with this in a positive way, that being said, I still have had very negative experiences with the medical profession and it is therapeutic to me to vent about them, and to share my experiences with anyone else who may be feeling alone or feeling like their experiences weren't validated. In no way do I see it as perpetuating negativity and hatred. I do feel that I have been personally attacked on this thread for not having had positive experiences with Dr.s and for wanting to vent about it. People are welcome to disagree, it's the personal attacks that are unfair and uncalled for.

[Canadian Karen]

People are welcome to disagree, it's the personal attacks that are unfair and uncalled for.

I so fully agree with that statement, nini...........

Hugs!

Karen

[Canadian Karen]

You cant assume that the people posting on this thread are not doing positive things in their lives. You dont know that. You cant assume that we havent taken this experience and learned from it and use those lessons learned in our daily lives. I, for one, have changed immensely due to this experience. I think I've changed for the better and have more compassion towards others now. Just because someone didnt choose to write a letter to the insurance companies, as you suggested, doesnt mean they are sitting home wallowing in hate. Its these generalizations about us that are unfair and unwarranted IMO.

That's wonderful! I hope they are doing positive things! I just wish they would share with us these positive things they are doing to try to change the system so perhaps we can implement them also. If they have any great ideas, I would love to hear them. I am open to all suggestions in trying to be proactive and change the way of thinking of the medical establishment.

Hugs.

Karen

[Guest mvaught]

That's wonderful! I hope they are doing positive things! I just wish they would share with us these positive things they are doing to try to change the system so perhaps we can implement them also. If they have any great ideas, I would love to hear them. I am open to all suggestions in trying to be proactive and change the way of thinking of the medical establishment.

Hugs.

Karen

hi Karen - i have an idea. after my husband and i publish our paper (see my post on page 11), we will have opened up interest in the academic community. maybe we can also for those willing to share their experieces for public view develop an ethnographic peice which consists of people sharing their experiences and their analysis of their experiences. stuff like this can eventually be made into books - like books that anyone can get - this will raise awareness and have some validity. rpossbly the focus of the work could be the need for compassion training for doctors or somthing to that affect. emembers that academics/ universities support the grants for new research and as well as are teachers to the upcoming medical profession (obviously this would be a long-term change sort of plan). not sure how interested anyone would be, but it is an idea that i had..any takers, any ideas?

-michelle

[Canadian Karen]

I think it is a wonderful idea! I think a lot of exposure for celiac disease would result! I am off to Care Bears, but will post later......

Hugs.

Karen

[Guest mvaught]

I think it is a wonderful idea! I think a lot of exposure for celiac disease would result! I am off to Care Bears, but will post later......

Hugs.

Karen

great - i am really excited about this. i was talking to my husband about it and we agree that with our current academic connections we could very likely get something published in the format of everone that participates write an article that would include personal experience and then analysis of that experience - then we compile these articles (so that everyone's article is put as is - well minor editing, approved by the author, of course - and from their pov) as a book the my husband and i are editors of - we can prepare intro/conclusion, etc. and with our weight/credentials in the academic community, the whole piece would be taken seriously. we have a very very good connection at the university of illinois who literally wrote the book on ethnographic research. plus there is a conference that he already wants us to present at next year where we can first present the book. anyway, it really could be something big. i'd like to see some responses on here and then maybe start a new thread to get it going. we would need several participants. with individual articles - there could be a broader focus. please everyone consider it.

hope you are all having a great weekend!

michelle

[jerseyangel]

Michelle--Thank you so much, and your husband, too for this unique opportunity to be heard. Please count me in--anything I can do, add--you name it. I'll be happy to tell my story--all the gory details of the last 20 years!

[Guest mvaught]

Michelle--Thank you so much, and your husband, too for this unique opportunity to be heard. Please count me in--anything I can do, add--you name it. I'll be happy to tell my story--all the gory details of the last 20 years!

excellent - we are going to get in touch with our contact at uniersity of illinois this weekend. we know him well and are very sure that he will be excited about this project. we plan on asking him to write a forward about the importance of informants speaking for themselves (he has alredy done research in this respect - this is as opposed to some ethnographic research in which informants are questioned and the writer compliles and comments on what they say) which is what we all would be doing.

i hope others will want to join in. we will also ask him about how many articles we should have and what their length should be so when we figure that out - i will let you know. but in the meantime - you can get started on doing some writing. i suggest pick one celiac topic that you would like to focus on in order to raise awareness: for ex: the difficulty of eating out/grocery shopping, doctors, insurance, etc. also, although celiac awareness is the main goal - it is probably beneficial to us to include some other diseases - so if you have celiac and something else, you can consider writing about that as well (for example - other food allergies - dairy, soy, etc can still be an effective forum in speaking about difficulties grocery shopping), i also have endometriosis and interstitial cystitis, so i am planning to write about identity and being dis/abled. there are ways to incorporate your experience with celiac into broader health forums - like the problem some of us have experienced with doctors and HMO, etc. our goal is to raise awareness - but remember for it to be effective, it needs to also be done in a way that many people can relate (which is difficult to do sometimes) while yet still effectively telling our personal, individual stories.

please anyone who would be interested - continue to let me know and begin just sort of journal/memoir writing about what you feel passionate about and your personal experience. after we speak to our connection and continue to get feedback here- i will start a new thread for discussion of this project with more info on what to do and how to do it effectively - a sort of call for papers if you will. ok. i am really excited!

-michelle