Illness Awareness Project - Speak Your Mind

[Guest mvaught]

Hi everyone, some of you know from this thread (discussion of project begins on p 14 - please see):

Open Original Shared Link

that I proposed the idea of compiling articles comcerning our experiences with our illness(es). This is the thread for those interested in participating in this project. I will be sending an email tonight to a connection that my husband and I have at the Univ of Illinios whom we feel will be particularly interested in this projects and (if he is) can help us get it published. My husband and I would act as editors (and contribute an essay as well) but the point would be for everyone to contribute their own essay that is about their personal experience. Please also consider that loved ones may co-write with you (or alone - in order to express their experience with you) and I would like to see both essays from mothers of kids with celiac (oterh illnesses as well) and even essays from the children themselves (drawn pictures by kids too - though it may be a little harder because of the cost to get pictures published - but the book will need a cover). I am putting together a list of possible topics and will post them later tonight. In order for this to be successful, we will need a great range and diversity in the topics that are presented. In other words - they can't all be about doctors or grocer shopping or what have you - we will need variety (hence the list of suggestions I am putting together...maybe after I make the list we can sort of "mark off"topics that are being covered already to ensure diversity). Okay - more later!

[Guest mvaught]

Hi everyone - as promised,

Here are some topic ideas to consider. Please begin brainstorming about them, but hold off on really writing your essay until we have heard back from our U of I connection to see what he is looking for. Like I said, if he is on board - it will be a sure publish, so we will have to get feedback from him before we can really take off.

Topic Ideas:

-Frustrations with doctors

-Frustrations with insurance

-Frustrations with grocery shopping

-Having a hard time finding information about celiac, gluten-free dieting, or other health problems.

-Frustrations/anxiety/fear of eating our or going to other people's houses for meals and holidays

-Breaking the news about you illness(es) to you family and their respons(es)

-Money - issues (it is expensive to eat gluten-free - go to doctors, etc.)

-General responses to your illness(es) from others (people at work, people at restaurants, etc)

-Dealing with a physical or emotional disability due to your illness

-Having to self-educate

-Involvement the board/community and what it has done for you

-Body image issues relating to your illness (have you lost weight?...are you bloated all the time? and how does this make you feel about your body?)

-How you illness has affected dating/marriage/intimacy

-Time management issues (having not enough hours in the day to cook from scratch, do to doctors, self-educate AND try to live a "normal" life)

-Having to give up the foods you love but seeing them everywhere (like on TV commercials) and resisting the emptation to eat them

-Being a sick person, but having to live around healthy people (ex: trying to act normal for your spouse - feelings of guilt/fear surrounding this aspect)

-How being sick has affected you job/career/school

-Rasing children as a sick person

-Rasing children who are sick

-Difficulty getting a diagnosis

-Pregnancy: your body vs your baby's

-Being sick but looking healthy (anyone ever say to you "Well, you LOOK great" ?)

-Identity issues: Who are you, now that you are sick? (what are the implications of this?)...do you feel like the same person you used to be?

-Any race/age/class/gender issues (Do you feel like less of a man/woman because of your illness?...have you felt discriminated against in regards to your illness because of any of these reasons?

-Feeling like you have to "wear a mask" (act like everything is fine and you are all peachy keen) in front of others (shopping, at work, etc)

-Having a positive experience with self-discovery due to your illness (ex: do you feel like a more compassionate person to others? do you no longer take things for granted? do you feel like a stronger person for surviving what you have been through?)

-Being a child/teenager with an illness (how do you feel compared to your friends. etc)

These are just some suggestions. I am sure that you can think of others as well.

After we get feedback form our connection, we will post it...as you are thinking about these topics now, you will want to be aware that the structure will go something like this...

-When you are writing you'll need to decide on a very specific and limited topic such as one I have come up with and keep your focus narrow in this sense. Also, there is no need to really explain the illness per se (no need to define it - we can put and appendix for that) - just stick to the topic and your experience and feelings. You will want to have a natural flow. Don't limit yourself to celiac necessarily (other illnesses can seep in). Also, make the tone of your essay to be from the point of view of a sick person in general...so that many people can relate (almost like you secifi illness is a side note - though not so harshly as that sounds - but that you are a sick person and there are many sick people in the world, it is just that your illness is celiac - or whatever it is you are concentrating on - and has xyz consequences).

-Auto-ethnographic work is most sucessful when you pick a very specific story to tell that relates to your topic. So in this sense, instead of saying "it is always hard to go to the grocery store because of this that and the other" you would tell a your story about one time when you when to the grocery store "this" happened. you can blend even a couple of experiences into a story (but not have a very harsh linear progression to it - we can help with this in editing if it is hard for you to do). anyway the specific story would be to get the larger point across - which would be in some sense your job just by writing your experiece but more our jobs (me and brian) as editors when we write the intro and conclusion of the book.

...again, once we get feedback from our connection, we can tell you with more certainty what needs to be done and how (as well as length, etc).

Okay more as soon as we hear from our guy!

Again, thank you everyone for your interest!

-michelle

[Guest mvaught]

Hi again - i had a question concerning time frame - there is none, yet so take your time and do some good brainstorming/reflective thinking and when we have an idea of a time frame (again after talking to our guy) i will be sure to let everyone know...also if there are any general questions - put them up on this thread, so that everyone can see them and i can respond for everyone

and please please use this thread to brainstorm - "pre-write" about your experience!

[Guest mvaught]

Great news, everyone - our connection is excited about this project. Here is our email exchange:

Dear Dr. Denzin,

As you know we have been working on a project regarding Michelle's

illness and our experience of it. Well, Michelle is very active in

an online Message Board group regarding one of her illnesses.

Through this participation, we have discovered that there are many

people that also wish to tell their stories in auto-ethnographic

pieces. This gave us the following idea that we hope you will be

excited about. We propose putting together a book that includes

essays from a variety of people dealing with a variety of topics

concerning illness. We will include our essay in this collection.

We would like to serve as editors to this collection--writing an

introduction and conclusion.

As you know, it is important for informants to speak for themselves

as opposed to traditional ethnographies in which the researcher

analyses (and even "speaks for") the informant. We not only believe

that such a book would be beneficial as a means of public awareness

regarding health care in America/Canada, but it also offers a

different perspective from typical academic books. We would very

much appreciate your help and feedback in whatever extent you would

like to participate (co-editor/ write a foreward, etc as

possibilities). Additionally we would like to present the book as a

whole at the conference next year. Thank you so much for you

attention to what we feel could be a revolutionary and important

piece.

(list of topics - same as I previously posted)

his response was:

this is very very exciting--it would make a wonderful presence at the

2007 conference--let me know how i can help,

best, nkd

We will be asking him about length of articles and if he would like to co-edit with us (he is very prolific - his vita can be found by googling him - his name is Norman Denzin - he is the kind of guy that can get anything with his name on it published, so that is what we are hoping for). Please begin to post your thoughts about the topic you would like to do on this thread - so that everyone can get an idea of who is doing what (to ensure diversity).

After speaking with Dr. Denzin some more - Brian and I will decide on a deadline.

okay - looking forward to seeing some posts/ideas about your topics!

-michelle

[jerseyangel]

Michelle--How exciting that Dr. Denzin is on board and the project can move forward! I have been thinking about what I could contribute, and I think that I would like to write about the 20 or so years leading up to my diagnosis last year. I was mis-diagnosed many times and had to endure years of unnecessary medications, teasting, and procedures. It was during the last 2 years, when my symptoms became severe, that I had to become proactive. I sought out alternatives, and through one, I was able to begin to do research on my own to figure out the cause of my varied health problems. Armed with some knowledge, and a bit of luck, I was finally able to persuade my Dr. to run the appropriate testing. What do you think?

[Guest mvaught]

Michelle--How exciting that Dr. Denzin is on board and the project can move forward! I have been thinking about what I could contribute, and I think that I would like to write about the 20 or so years leading up to my diagnosis last year. I was mis-diagnosed many times and had to endure years of unnecessary medications, teasting, and procedures. It was during the last 2 years, when my symptoms became severe, that I had to become proactive. I sought out alternatives, and through one, I was able to begin to do research on my own to figure out the cause of my varied health problems. Armed with some knowledge, and a bit of luck, I was finally able to persuade my Dr. to run the appropriate testing. What do you think?

I think that sounds great. So as I said, it is best to have is as sort of "one time" story - but I think that for you maybe you can discuss the day that you went into the doctor to persuade him to run the appropriate testing and how maybe you felt before you entered his office...the things that you were thinking about concerning the past 20 years of you trying to figure out what happened and the two years of it getting worse as well as getting misdiagnosed.

So in otherwords your story can start something like ..."As I drove to Dr X (oh yeah -remember names of drs must not be mentioned but you can rename him or her or just say Dr X or M or whatever) I was thinking about the last twenty years of my life that brought me to this point...then xyz of that" "then as I pulled into the parking lot i wondered how this appontment was going to go because ...yz about misdiagnosis" then, as you were sitting in the office you think of the xyz alternatives you tried..."

anyway, not trying to put words into your mouth, but just to give you an idea of a format. Make it a "one time" story but with reflections about the entirety of your experience - but also be sure to emphasize the feelings you had during that "one time" - of course, those being influenced by the 20 years, etc. In other words something like "I felt anxious as I signed my name to the schedule pad because I have done it so many times before and left the office with no clear diagnosis of what was wrong with me" Sort of bringing in all 20 yrs of your experience with diagnosis through the telling of one specific experience.

Does this make sense?

Anyway, I am really excited - and it is super great that Denzin is on board and excited as well! I really appreciate your participation in this project! Can't wait to see your essay!

-michelle

[jerseyangel]

Michelle--I like the ideas you had for putting my experiences into a story coming full circle. I will proceed with that concept in mind. I love the 'many voices coming together to tell a story about Celiac" feel. I could see it as being a poignant collection of essays about different people, from different places, with different circumstances, but all sharing the same disease. Human as well as informative. I would like to hear your thoughts on the 'feeling' you would like the book to have. I know I'm babbling on here--just throwing ideas out. Any thoughts yet on length?

[mouse]

Michelle

I would like to cover how our marriage surrvied the 30+ years of being treated like a hypochondriac. How I always feared that my husband would believe the doctors and not me. His feedback would be the truth as he saw it at the time of each illness - whether I was really sick or it was just in my head. I have never asked him and now I will. Our marriage is strong enough to survive this type of disclosure.

Armetta

[Guest mvaught]

Michelle

I would like to cover how our marriage surrvied the 30+ years of being treated like a hypochondriac. How I always feared that my husband would believe the doctors and not me. His feedback would be the truth as he saw it at the time of each illness - whether I was really sick or it was just in my head. I have never asked him and now I will. Our marriage is strong enough to survive this type of disclosure.

Armetta

Ok - for your paper..(and this is really popular in academic circles right now - called "performance dialogue") my suggestion is that you write it as a conversation between yourself and your husband about this topic (which I think is excellent by the way). So your format would be written as "you said" then "he replied." Of course you two would want to set it up (I am sure htat your granddaughter can also help with this) something like "we were sitting down for dinner one night. (describe the night..describe the meal, etc). Again like a story - then relay your conversation of you and he discussing the hypochondria issue and if he DID believe the doctors - of course you will also be including both your feelings and his. Anyway - I hope you see what I mean - just make it like a natural dialogue "set" in a specific circumstance.

And any of you that are using exchanges between people - like I said, "performance dialogue" is the big thing - very popular now in academia, so the dialogue usage will be a very sucessful means of etting hte point across for essays similar to armetta's essay.

sounds great - can't wait to see it.

-michelle

[Guest mvaught]

Michelle--I like the ideas you had for putting my experiences into a story coming full circle. I will proceed with that concept in mind. I love the 'many voices coming together to tell a story about Celiac" feel. I could see it as being a poignant collection of essays about different people, from different places, with different circumstances, but all sharing the same disease. Human as well as informative. I would like to hear your thoughts on the 'feeling' you would like the book to have. I know I'm babbling on here--just throwing ideas out. Any thoughts yet on length?

Hi again, as far as length is concerned - just write it out and see what it is...I am sure that a variety of lengths is ok (and if anything needs to be extended or cut - we can always work on that together during the editing process).

As far as the tone of the book, we want it to be very accessible to everyone. I may be repeating myself- but we don't want only people with celiac (or people who already know what it is) reading the book - the goal will be for it to be a sort of book that anyone will want to pick up. So probably what we need to focus on as far as a general tone is for it not to be celiac limited so that it is presented more as "illness in america/canada." (and your essay is a perfect example of this - it took you forever to get diagnosed with celiac just like many others experience misdiagnosis of other diseases..I read a statistic for endometriosis which I also have that stated that world wide it takes 20 years for most women to get a diagnosis for it). Of course, since so many celiacs will be participating - celiac will be such a massive focus of the book, thereby raising awareness as a disease so many people are in the dark about (but it will be so prevalent as far as the book is concerned). i think that it will be wise to also include other diseases as well (i think denzin would agree), so again it will be more accessible to others that know nothing about celiac and even to those that know nothing about dealing with chronic illness in general. This tone will be most beneficial because again if it is celiac limited- people who already know about it will read the book and no awareness will be raised - if it is expansive as far as illness is concerned, it will be most effective in raising awareness about celiac because again, more people will be interested (not to be tricky - but it is kind of playing a trick on the reader who purchases the book -this book is about many illnesses - which will be true, we do want to have other illnesses represented, but then hmmm a great many of the essays are about celiac. so if someone, for example, buys it because they see that there is an essay about endometriosis, as an example, and then reads the whole book and (like what happened to me with my endo experience) - wait a minute, maybe I have this celiac things too - maybe that is the cause of all of my GI problems - i should find out more...this would be the goal). marketing is a tricky thing and we are dealing with a marketing issue in this sense (which of course is determined by people's interests).

In the intro/conclusion we will discuss the importance of recognizing cronic illness and the importance of listening to the often "silenced" voices of those with such illnesses..then get into more specifics (something along the lines of for "example, those with celiac experience xyz which are represented in this book.." then relate it to other diseases which many with celiac also have - the recognition of us as chronically ill people like so many others, etc). Of course, we will have to wait to write the intro and concl after everyone has submitted their essays.

-michelle

ps - my essay, i think, is going to be sort of "a day in the life" of being a chronically ill person (sort of giving a story=style run down of my day)...therefore, i will discuss celiac (in the sense of the anxiety i feel everytime i eat - as i still get accidently glutened) and my interstitial cystitis that makes me pee several times, etc. AND my endo with makes it difficult and painful to have sex a lot of times....sort of all encompassing for mine. all essays will be different of couse, so i'm glad that essays like yours will be more disease-specific.

pps - oh also remember that any of you can submit your essay as anonymous if that is more preferable to you.

[Guest BERNESES]

This is great! I'm in! Still thinking of my story but I'll make it a specific narrative.

[Guest mvaught]

This is great! I'm in! Still thinking of my story but I'll make it a specific narrative.

excellent Bernses!! i am really excited! i think it is going to be so important in raising awareness about both celiac and well being sick in general - i mean who understands us better than us!! glad to have you participate!!

-michelle

[Guest BERNESES]

I'm really excited too. Thanks for putting this together! Beverly

[Guest mvaught]

I'm really excited too. Thanks for putting this together! Beverly

yep - its gonna be great

[Guest mvaught]

if you would like to post the story ideas (as some already have - that would be great)...i am sure that for many of you the actual story/essay is going to be too long to post on here (again, though loved to have some samples for others to see) please email them to me to the following addresses (please email to one and cc to the other to make sure that i got it ok - oh and let me know on this thread that you sent it so that i can be sure to check on it) and it is best to put it in Word if you can...otherwise, also just paste it into the email so that i for sure have it: okay emails: michelle@severinestudios.com and msharke1@fau.edu

in the mean time - i posted this little story on a blog (and it is on another thread too) - i may or may not use it for part of my essay. we'll see....i want for you all to write yours first so that i can be sure mine is something different (i can blab about just about anything). anyway, here is my story of the day, I call it...

"SPARKY SAYS NO (GLUTEN)":

It is a warm sunny day here in the South Florida winter. People are walking around outside in tanks and shorts. I went to the doctor today to get a prescription that apparently already got called in, what a waste - except not...

So after messing around with my diet for months, I finally got the validation that I needed. Here is the rundown.....Before Brian and I got married, I went gluten free and it helped me immensely (notice that I fit into my dress instead of being hugely bloated). Then, I cheated on the Honeymoon (due to this cheating, one night of the HM, I fell alseep, or more like passed out, at 8pm and didn't get up until noonish the next day - during this time Brian made our myspace accounts - so we can all thank gluten for that) and for about a week or so after (which was crazy time because we had missed school for the honeymoon) in which we ordered out or went out every day. Then I committed myself to going off of it for real - which I did and again it helped. Then I found out that you have to be on gluten for it to show up in bloodwork - so I did that, but could NOT stand it (it made me feel like death). Apparently, you have to be on it for 8 months in order for it to show up on bloodwork and it can even take as long as 5 years in some people (to that i say WHAT?!?!). So after being on gluten for only two weeks, my brilliant GI tested my blood anyway (can't people read some research - even I knew it was a waste), which came back negative...duhhhh. And after saying F**@ YOU to him (well, not really, but totally in my mind, I did) as he was scoffing at me, decided that staying on gluten for eight months would practically kill me, so no thank you.

Anyhow, back to today...I relayed this complete story to my regular doctor up at school (who knew part of the story, but not other stuff - the last time I saw her was before going on gluten for the last time) and she said, "So, you were right about celiac" (GO ME, by the way for figuring it out) "Well, if you went back on it and felt bad again and being off it makes you feel better, then we have our comfirmaiton right there. No need to make yourself sick for eight months." Thanks Dr. Shapiro, you are a freaking genius (well, not really, just are able to rely on common sense than charts - which, well, sort of is ingenius).

In celebration of what I consider to be an official diagnosis (though not sure that she wrote anything on my little chart - but I will be sure to ask her to next time), I bought a bunch of stuff from the celiac website. I already have a restaurant guide and dining cards, but I got a cookbook and some other guide thingies. Validation is sweet.

You know, I say that I needed validation, but last night as I ordered a new medical ID bracelet (since the cute hemp one that I made broke as hemp inevitably always does AND since important information like NO MRI because it will fry or kill me due to the bladder implant thing I have, whom I call Sparky - was on the back of the ID and wearing off since it was just cheap stainless steel) I made sure that NO GLUTEN was engraved on it (right after the NO MRI, of course..I wonder if I can put NO MRI THANKS TO SPARKY the next time I get one...hmmmm), so I suppose that i didn't really need the validation after all - but it sure was nice.

The moral to this story is that a doctor can take your pulse, but only you can listen to your heart.

[Guest mvaught]

Just wondering if anyone has done any writing - had any ideas, etc. Just keep me posted (not to be pun -ny)

[Guest BERNESES]

Ugh! I haven't yet- getting ready for my comprehensive exam but... i'm going to. Thank you for reminding me. Beverly

[Guest BERNESES]

I think I'm going to write about waking up from my biopsy. at this point i had been gluten-free for two months so pre-biopsy I meet with the GI and he says, "We'll do a biopsy but at this point it's academic because you've been gluten-free for two months." he then tells me that if the biopsy comes back negative, which it probably will, we'll just call it gluten intolerance.

I wake up from the anesthestia, completely looped and upset (I don't do drugs well) and sick as a dog (I had been doing the "gluten challenge" for 14 days. He tells me there is no damage and that i don't have celiac's. So iI ask him if he's going to diagnose me with gluten intolerance. he says no. i ask him why, then, have i been so sick for the last 14 days while eating gluten and he sys, "Mind over matter." Turns on his heels and walks out. it was horrible and definitely the defining moment in this experience where i realized i was going to have to take charge.

[Lisa]

I'll try to send you something. Thought I would start with the onset of Celiac and my distress with the personal humiliation of that, and regress how it came to kick in. How's that?

Lisa B

[Guest mvaught]

Hey everyone - thanks for the response!!

Beverly - I'm studying for my comps too . Your story sounds great. Doctors are soooo frustrating. Mine was like that too (I mean, don't they know that being gluten free screws up their already imperfect tests?) Mind over matter - ummm, whatever. Why can't they just listen to us when we say, when i eat gluten I am sick - when i don't i am better (fortunaltey my crappy student health center doctor actually followed that rule - she doesn't do the right thing in a lot of other respects...took her forever to send me to someone to diagnose my IC, but with the gluten, she actually used some common sense). Anyway enough about me - your story sound great!

Hi Lisa - your idea is great as well. I definately like that you are dealing with the emotional side - humiliation, etc. that will be really good.

okay - just keep me informed with progress, don't feel bad if it takes a little while - i think that as long as things are sort of put together by september that we will have enough time to edit and do the intro, etc as well as get it prepared to present at the conference. so don't fret.

-michelle

[jerseyangel]

Michelle--mine is coming, really. I didn't think I'd have as much trouble putting it all into words. Good to know I have some time

[Guest mvaught]

Michelle--mine is coming, really. I didn't think I'd have as much trouble putting it all into words. Good to know I have some time

Hey Patti - great! Yeah, believe me - sometimes writing under the pressure of a bunch of people yo udon't know will be reading this one day is stressful - if you have trouble, you can try writing it as if it is a letter to a friend of yours - using very natural speech. in fact the letter format is even an acceptable format for this sort of thing. journal format too. i personally find for this sort of thing that handwriting it first helps. anyway, let me know how it goes - glad you are still excited about the project.

-michelle

[i canary]

Has anyone heard from Michelle lately? Is this book project still happening? She hasn't responded to my PM or my email.

[Guest mvaught]

Hi everyone, sorry I have been MIA...just moved and am finially settling down. project is still on....icanary, please resend your manuscript to bamvaught@hotmail.com. hope everyone is doing well. i have been doing good. my body is starting to straighten up it seems. okay, pm me or email me y'all.

love,

-mv