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View Full Version : "The Chronic Illness Experience" BOOK CHAT



hatlady
03-28-2009, 10:47 AM
Hi all!

Re the book also ran's doc suggested - all I can say, AR, is that you have a rockin' doc who UNDERSTANDS. I found a cc on Amazon, used, for about $15, and later saw one for (sigh) about $2 at Goodwill. If you've got a store near you, check it out. Ours is GREAT for books!

I've always been a bit leery of "self help" books. Often too "preach-y perfect." But I started reading this one yesterday and have barely been able to put it down. In fact, woke up at 3 a.m. and ended up reading for another hour. Its good. Really good. THe author has an "invisible illness" and she quotes many others - several with lupus - throughout the book. It is written from the heart and the head.

I know we all don't have it yet, so I'm going to post a couple quotes that stuck out in the introduction. A discussion starting point, perhaps?

*****
From page xvi of the introduction:
"Most of us prefer to pass as healthy, living as normally and fully as we can under the circumstances. We hesitate to inflict our private anxieties on a health-conscious world that sees illness as a temporary abnormality and has little understanding of chronicity."

And a couple pages later - I thought of Ron, Lars and the other men on the forum:
page xxi:
"Passing as healthy is apparently a more urgent matter for men than for women."
*****

Do you try to "pass?" Does that increase or decrease frustration and/or stress for you? What happens to you when you're "outed" as having a chronic condition?

Oluwa
03-28-2009, 02:57 PM
I try to pass..and times I wonder, where is my Oscar.....

Sharing is caring....thank you for sharing...

Love, hugs and all that good stuff...
Oluwa

Pretti in Pink
03-28-2009, 04:05 PM
Nice discussion, like Oluwa, thanks for sharing.

I don't believe that I have ever been "outed" due to my illness. I generally just do what is within my limits and that which I can't do, I just let it be known that I can't do. I try not to make is seem as if I am "using" my illness (although there are times when it is warrented) and some don't even know. So, if that is considered trying to pass, then I guess I do but I just try to keep things as "normal" for me as possible.

Danica01
03-29-2009, 12:16 AM
Wonderful idea!!!!!!!!!!!!!!!! Thank you so much for sharing those parts!!!!!! It has put a fire in me that will only be out out after I get that book!!!!!!!

As for the question......................I have to admit, I do try to pass off as being healthy. I don't believe this is a good thing, at least for me it isn't. By trying to pass as a healthy person I tend to push myself in order to keep up with others. This hurts my body and causes a lot of flares for me. Because this was affecting me so negatively I decided that I would speak openly about it and try not to hide my Lupus. All of my friends know about shot night and I get calls and text messages from them just checking on me and making sure that I am ok! I had so many doubts about people understanding and I have been pleasantly surprised!!!!

Working environment is a bit different. My two bosses knew and they ended up telling all of their family members, who just happen to work for the same company as me. It was a nightmare and so much drama was created from so many little things! I was sent home if I looked tired. I needed the money; therefore, I felt like I needed to hide it from them a lot of the time. They wouldn't give me new assignments due to added stress and wouldn't let me go out to clients because they worried about me getting sick. I know they meant well, but I just felt held back due to my Lupus! It was frustrating and I really hope I have some privacy when it comes to me Lupus where ever I end up next!

hatlady
03-29-2009, 05:42 AM
I often (usually) try to "gut it out" and pass as well. I think just about everyone knows I'm sun sensitive - if nothing else, the collection of wide brimmed hats gives me away there! But I try so hard not to let the fatigue and the pain show.

A few in the office know - when the hear the advil/excedrin/tylenol/ibuprofen bottle rattle as I take a dose, as I thank my assistant for fielding whatever person with a problem happened to come to the counter... they do what they can to "protect" me. That has its downside - sometimes they cover for me too much.

Since I "look" healthy and I do go to the gym most mornings, I often get pressure to join in things like local chairity runs (this body DON'T run - never did, even "before lupus"). THose I can bow out of pretty easily.

It is the night events on campus - the play, the concert, the political discussion - that I have trouble with. We're expected to "be present" - but I'm honestly not safe on the road after about 7:30 p.m. - - fatigue is every bit as dangerous as alcohol. I feel like I get the "Oh THAT excuse again" look from my superiors if I say I can't attend because I don't have the stamina. So sometimes I DO go, and oh lordy, we all know what that means for the next day....If it is a Saturday, I can sleep in, otherwise it is toughing it out yet again at the office...

Those without a family member or CLOSE friend with a chronic condition don't understand. But even those with someone close who has issues may not 'get it' - - since we're all so different. Danged if you do speak out, danged if you dont...sigh...

mountaindreamer
03-29-2009, 08:41 AM
I often try to outlast feeling bad. i want so badly to go hiking, skating with grandkids, dancing, etc. Lots of times i will go ahead and participate knowing that i will pay later. Went out last night for my "guy's" birthday, we were at a great club, having a good time just sitting at the table enjoying the band. several people came up to me and tried to pressure me into dancing....i had to smile and decline. Thank goodness Jim understood and was happy that i did not overdo the evening. We love to hike, now there are times that i have to send him down the trails, while i wait in the car....i cherish the days that i do feel like a hike.

I find that with my kids (who are all grown), i have to really advocate my own independence. I try to pass off as feeling ok, but they can tell by my voice and my eyes if i am being truthful. they are trying to help, but are (in my opinion) getting too involved. they want to go to drs. with me, make sure i eat, drive me around, etc. this is all so wonderful, but i am very independent, and don't want to rely on others...

my daughter, lisa, almost did not take this job in Australia because of my illness. I had to really get forceful with her, and i told her that we have encountered so many obstacles in our lives, and this one will not take us out. we may get knocked down by it, but we will get back up. I told her that me and the lupus would still be here when she gets home. My conscience would haunt me if i let one of my children change their lives because of an illness that i have.

so yes, i hide a lot...i guess this is pure stubborness, but i just don't want to give up yet.

p.s. my book is ordered, hopefully it will be here soon.

mountaindreamer
04-01-2009, 01:41 PM
what is the latest on getting the book? hope everyone that wants to participate in a book club can find a copy. My copy came in yesterday, i have started reading it, and can tell that it is definitely a thought-provoking book.

mountaindreamer
04-01-2009, 07:49 PM
don't know what happened. i submitted this post this afternoon, but it was not highlighted...so i will try again.

Rastagirl
04-01-2009, 10:16 PM
Just ordered my copy from Amazon....couldn't find it at the Library or Goodwill.

Should be here in a few days.

Lori :cool2:

mountaindreamer
04-02-2009, 04:12 PM
hi lori,

i have started reading the book, and i think we will all take some valuable knowledge away with us, especially about the foundation we will use to live with chronic illnesses.

hope you enjoy the reading...

Rastagirl
04-02-2009, 05:28 PM
Thanks Phyllis.... :veryhappy: I'm looking forward to my book arriving soon.

So....I guess I'll take a stab at the question Hatlady has circulated.....

In the beginning, when I was first diagnosed with Lupus, I was 18 and wanted only to 'fit in' and be able to do all the things everyone else did. I didn't want anyone to know I was sick..because that meant explaining...and Lupus was pretty tough to explain 27 years ago...still is today, for that matter. I also didn't want to be 'outed', because I discovered that once people knew, they treated me differently. First, people close to me tried to convince me that I wasn't being treated differently...that it was all in my head. But my perception was that whenever I told anyone, I began to feel like they felt sorry for me, that they stopped calling me to do things, that they didn't come around anymore because they didn't want to hear any bad news. I also got tired of the ignorant people that, once you told them, they asked stupid questions or had to be told every time you saw them, that, "yes, I still have Lupus. No, there's not a cure. No, this rash is not contagious...." I came to hate those conversations.

So, for a very long time, I became real quiet about my disease. Because I was in remission and had no outward signs, it was easy to 'not' tell anyone. After awhile, I began to pick and choose who I would tell. I would wait when I first met somebody new, to get to know them and kind of get a feel for their character. If they passed my test and I felt they were a kind, compassionate, understanding person, then I would tell them my story if it happened to come up in conversation, or they asked me a question directly related to my health. I have found that this method still works for me.

One thing I did discover during my years of working full time (I'm on SS Disability now) was that I would get a job and go in and prove myself first...I would make sure my employer could find no fault with my work, do an excellent job and sometimes make myself as valuable as 2 employees, to assure my value at the company. Then, if I felt like my boss was going to be understanding, I would choose to share my health information. I also discovered that sometimes when you tell people at work, they change their attitude toward you for the worse...and sometimes for the better. One day, I discovered that in sharing I had arthritis, I accidentally met another woman with Lupus as well. I was sitting at my desk after typing a bunch of forms and had joint pains in my fingers and wrists (it was a cold, grey winter day) and I was absentmindedly rubbing my joints. She walked by my desk and asked if my hands were okay. When I told her I had arthritis, she said she also had it and asked me what caused it. I told her I had Lupus....imagine my surprise when she said she had Lupus too. She asked me to go on break with her, and we became very good friends for the next 3 years, until she moved to San Diego and we lost touch. She was the nicest thing that ever happened to me during my working years. She was the neatest lady and I remember she tried to stay active by doing Karate. And she had her blackbelt. Pretty impressive!

So I guess my answer is that sometimes being 'outed' causes much more misery and stress than it's worth....and sometimes it can bring you a kind, understanding new friend.

And sometimes being 'outed' means a chance to educate someone that asks a simple question like..."Why do you have so many stretch marks on your arms?....or "What's Lupus, my cousin has it and I don't really know that much about it?" Whenever I'm having a medical test done, or an x-ray, or something, I always seem to get a technician that asks something like..."So, why have you had your hips replaced, you're so young?" So now I make sure to 'educate' them the best I can about Lupus and answer all their questions, as long as they're asked in a polite way. And if they happen to know someone who has Lupus, I always tell them to make an extra effort to do something kind for that person, or give them a call and see if there's anything they can do for them. I explain that Lupus is a very frustrating, lonely disease that attacks really great people that don't deserve it.

Now that I have written a chapter in a book....I guess I better thank anyone that actually reads this thru to the end.... :thanks:

Just call me Chatty.... :chatty: Right about now, you guys are probably thinkin'...."why did we let HER join this book discussion....?" :laugh2:

Hugs....Lori

mountaindreamer
04-02-2009, 05:43 PM
are you kidding lori? i read every word...what a wonderful story of your different experiences with people's reactions to lupus.

i too find (paricularly from technicians in the medical world) that they ask questions obviously for the purpose of learning....not judging. what great advice you give people to contact people with lupus and to spend time with them...this is such a good idea. i will definitely start incorporating my discussion about lupus.

Rastagirl
04-02-2009, 06:00 PM
Thanks, Phyllis. You made me feel better about my lengthy post.

If my husband, or teenage son, happen to walk by while I'm writing a really long post, they always go, "OMG, Lori (mom), seriously, you're not gonna post that...nobody wants to read that much in one sitting".

They give me such grief. :4:

I always tell them people on my forum are much smarter than theirs...they can handle big words and long posts and everything.

:)

Lori :cool2:

mountaindreamer
04-03-2009, 04:07 AM
hooray lori,

it is only 7 in the morning, and you have already made me laugh out loud. good job.....but, sometimes even the smallest words avoid my mind.

Rastagirl
04-04-2009, 06:21 PM
Yay....my book arrived in the mail today!

I just finished reading the Introduction and I am thoroughly impressed. This is going to be a really good read. I'm so glad it was brought to our attention...I feel like it's going to have some very valuable information.

I am so torn though....I'm ready to dig in, but the sunshine appeared in Portland today and it's supposed to stick around for a few days...so I need to be out working in the yard and walking my dog. In Oregon, when the sun arrives for a few days, you put the books and movies away and totally take advantage of it.

I sure hope many others here are able to pick up a copy of the book...I think this will make for some excellent discussions for us.

So, I'm heading out to plant a few flowers, walk the dog, say hi to the neighbors....

Tonight, I know what book I'll be reading..............

Enjoy your weekend!

Lori :cool2:

hatlady
04-05-2009, 07:41 AM
Lori, thanks for your post - I've yet to meet someone "IRL" (in real live - - vs electronically...) with lupus. I expect that will be an intreesting conversation. We have several people at work with RA, fibro, MS...but as far as I know, I'm the only lupie.

So glad more of us now have the book - how about someone who's started reading it pick the next piece of our discussion?

sick n tired
04-05-2009, 08:09 AM
Hey all,

I haven't gotten the book, yet...with the upcoming wedding at my house and the impending move, I am a bit frazzled.

In answer to Hatlady's question....at first I told my brother, hubby and friend...it grew in time to my whole family. I am now sorry that any of my family(mom, brother's, sisters...) know...It would be easier if they didn't know anything so I would not be so hurt when they don't care or make fun of my cognative problems. My mom made light of me and even said that I should just hang around her 75 year old husband as he has some of the same problems...when I said mom he is 75 years old she said I can tell he always had this problem just like you...I was totally hurt and still am as this happened yesterday.
The thing about my mom is she is like an ostrich...she really doesn't want to know she likes to pretend all is well... I still stupidly try to go to her for support, even though I know she doesn't want to hear it.

I am trying to be much more quiet in that respect...It has helped at the kids school sort of because if I am unable to make it to a function, but I don't get calls for help, because they think I am too frail.

All that said...if I had it to do over again, I would have told nobody except my husband.

I hope this post wasn't too personal...or venty.

mountaindreamer
04-05-2009, 09:55 AM
hi sickntired,

i understand about your mom. Yesterday my mom called me "stupid" when i told her about absentmindly using cleaning solution on the carpet that bleached it out.....i quickly but politely ended the phone call, and felt very sad all by myself.

i don't honestly and openly discuss feelings with my mom.

mountaindreamer
04-05-2009, 04:26 PM
i have a question for us to ponder and discuss. On page 16, cheri writes about a sense of "euphoria" when diagnosed, and she expands by talking about how this confuses friends and family. She explains that our euphoria (though always temporary) is difficult for those who care about us because they are grieving, and we are relieved for the moment. she goes on to say that usually by the time we are diagnosed, most of us have an idea of what is wrong. plus, when diagnosed, we have a moment of believing that we can feel better, and possibly get well.

then, on the other side of the spectrum, is sorrow, shock and fear: this can affect the person to the point where they are in a type of denial....they talk to others about the symptoms, diagnosis, but without really feeling like it includes them. one person described it as "it was as if there was a part of me experiencing it, and another part sitting on the outside watching what was going on with me."

Cheri continues by saying "the reality of chronic illness, with all its inherent fears, eventually does catch you unawares."

my question is: do you remember how you felt when diagnosed. were you relieved and euphoric, or were you sorrowful and possibly in shock about the diagnosis?

i had really strong suspicions that my diagnosis would be lupus because i had tested positive and had suffered from some symptoms for a long time. when diagnosed, i remember feeling relieved because (even though i new there was no cure) i believed that i could at least get some relief from the symptoms. Also, i was relieved because now i received more respect from medical field when i needed attention. it was like all of sudden, no one thought this was in my head any more.

i don't remember being euphoric, but i was relieved and very frightened. i hid my fears from those who care about me, and kept them to myself.

share your story.

sick n tired
04-06-2009, 12:55 PM
Oh yes I do remember...I was totally euphoric, you could almost say excited...the reason was because I finally could say to my family...see, I told you I was ill, this is contrary to what you are supposed to feel and the relief is almost overwhelming to find a name and be told you are not a crazy hypochondriac.....and then, the next day, the reality set in and I was horified, frightened, and even angry. The anger was that I wasn't believed by hubby or family. I never suspected lupus in fact, I knew Lupus existed, but not anything about it except people die from it...

I went back to the doctor who for years had told me it was all depression one more time, just to rub his nose in it...it was worth the bill...he,he,he

Oluwa
04-06-2009, 02:10 PM
Hey....I ordered the book last week, said delivery will be between the 10 - 27th of April...humm, are they delivering it by mule, literally pony express.. From a seller at Amazon...

Loves,
Oluwa

sick n tired
04-06-2009, 05:34 PM
Hey Oluwa,

Maybe they still have to chop the tree town to make the paper to then be able to print the book and then bind it...all that done before they get on their Bike to hand deliver it to you....now that 's service, huh?:cute:

mountaindreamer
04-06-2009, 06:23 PM
ok guys, i will wait for everyone to get their copy of the book....however, i think the questions that we discuss can include everyone on the forum....they are real life questions that are addressed in the book, and it would be nice to include those not reading the book. this is a way to share what we learn with other forum members.

think about it, and all are invited to participate.

Rastagirl
04-06-2009, 07:57 PM
I agree, Phyllis. These are questions that everybody on the forum can ponder and respond to, the more input the better.

I'd hate to think that someone might be left out because they can't get a copy of the book.

I've read a little of the first chapter and I'm REALLY enjoying it. It gives you plenty to think about. I'm certain there will some great conversation generated by the topic.

Lori :cool2:

Oluwa
04-06-2009, 10:07 PM
Oh, no, don't wait for me.... go ahead with the questions..I will chime in when mine arrives and in the interim I will ponder and maybe post with my wonder-ment...revelations...

Loves,
Oluwa

Oluwa
04-09-2009, 11:09 AM
Hey....Mine book arrived...started to read the first few pages and the first page I felt the words..

Introduction...

Had we been born a few decades earlier, many of us who are chronically ill would not be alive at thirty, or forty or fifty.....No longer illnesses to die of, but still not thoroughly curable, they have become illnesses to live with....

Those sentences....my eyes filled with tears...I was grateful.


I can't wait to dig into it more. I'll have to get a pearl chain to dangle my reading glasses from....

Love,
O.

Rastagirl
04-09-2009, 05:34 PM
Oluwa....

I teared up too when I read that passage...it really struck a chord with me.

There is always something to be grateful for....I used to think it sucked to be born in the '60's, but now I'm happy it wasn't the '30's or '40's.

I know how much we hate Prednisone, but if I'd been born before that was discovered, I'm pretty sure I wouldn't be sitting here right now typing these words.

I am truly grateful that having this illness doesn't have to mean your life will be cut short....and very, very grateful for the achievements that have been made in the field of medicine that benefit all of us all today.

God bless all the people that choose to go into medical research and work tirelessly to benefit those that are sick. I am grateful for each of them, as well.

Lori :heart:

p.s. Glad your book arrived!

brandichi
04-09-2009, 09:04 PM
My book just arrived as well! I've only read the first few pages so far, but I had the same reaction about if we'd lived in an earlier generation, we may not be alive right now. Wow. That made me stop and just think for a minute about the gratitude I feel. It's easy to complain about how awful lupus makes me feel, and how it's limited my life. But when I stop and think about just how different my life could have been, well, somehow it put it all in perspective for me. At least I'm HERE today! And when I was first diagnosed, the doctor wasn't so sure I'd make it then, it had affected my lungs so badly. Prednisone saved me too, along with the nebulizer treatments I needed 4 times a day.

I have lots more thoughts about the other questions in this discussion, but I'll come back to this tomorrow, after I've (hopefully!) had a good night's sleep.

mountaindreamer
04-10-2009, 07:52 AM
hello fellow book club pals,

just wait,.,. this book is full of "aha" moments. i have gained so much from the reading. However, this book creates so many moments where i stop and ponder my situation that it is very slow reading....but i am gaing so much about the emotional aspects of living with a chronic disease.

Oluwa
05-12-2009, 08:41 AM
Ugh..I haven't made it pass the Intro. Not that it isn't interesting, it is...just my mind hasn't been in the mood to read. I've been more in the mechanical mood, physical rather than the mental and emotional state....Not deep.

But when I pick it up again, I will share...

How's abouts you's guys...as we say in The UP..Yous guys.

Hope it is a lovely day in your neck of the woods...

L.
O.

Rastagirl
05-12-2009, 10:11 AM
I'm the same Oluwa...I did make it past the Intro but it's slow going cuz there's so much to ponder. It gives you plenty of things to think about.

I too have been much more into the physical, rather than intellectual..emotional. I think maybe it's Spring that's got me feeling that way. I can't seem to sit still long enough to get thru more than a few pages at a time. I'll get there though. It is sposed to rain thru Friday here, so I may curl up with a blanket one afternoon and tackle a few more pages.

News says we can expect Sunny and 85 degrees this Sunday and Monday. That sounds heavenly...I like having that to look forward to. Mmmmm....think I'll plan a trip to the nursery later this week and find my fav plants in anticipation of the sun to come. :veryhappy:

Take care....

:cool2: Lori

mountaindreamer
05-12-2009, 10:14 AM
well, i am afraid that i must rescind my last post praising the book. Yes, it is full of information, mostly validating what we already experience. It does offer the different ways that people respond to and face chronic illness. It also offers some insight into the various actions that others have to our illness.

However, i am afraid that, even though she has tried, the author really does not understand the magnitude of chronic illness. The book is long, the sentences are long, and each paragraph is loaded with thought provoking words. But, i can't keep my mind sharp enough for long enough to truly gain anything from all of the reading. I have underlined some "aha" thoughts, but I certainly don't remember them now.

I am so frustrated over the length of the book itself, it seems like a never-ending project. I guess i need a shortened version.

I certainly do not want to discourage anyone from reading the book, the author did a great job of addressing our situation, but I am just struggling with the memory part of it.

Anyone else experiencing this?

Rastagirl
05-12-2009, 10:48 AM
Yes, that's the problem for me too, Phyllis. If my memory isn't sharp...I'm having to read and reread passages and then by the time I think about them...a day or two goes by and 'poof' all the info is out of my head. :irked:

I'm so glad you said something, cuz I was thinking "how the heck am I going to get anywhere with this and be able to retain enough info to actually discuss it on here?"

I actually stopped and chuckled to myself the other day while reading it, and thought, maybe a better idea would be to assign 1 or 2 pages at a time to read....then stop and discuss...before we try to put more information into our befuddled brains. Maybe it should be a

V.. E.. R.. Y..

S.. L.. O.. W..

B.. O.. O.. K..

C.. L.. U.. B..

C.. H.. A.. T..

with a specially designed curriculum that takes into account Lupus Brain Fog... :wacko:

:cool2: Lori

Oluwa
05-12-2009, 12:19 PM
You do have to be in the right mental frame to take on such a book, eh...and I don't have mine framed up, right now it has been mush.

It sounds like an exhausting book..a brain workout than falls flat.

I will attempt to read it at some point...along with my 400 page classic novels like To Kill a Mockingbird or East of Eden....one day or they may end up at a yard sale...

Toodles.
Love,
Oluwa

Morpheus
05-13-2009, 05:02 AM
Hi all!

Re the book also ran's doc suggested - all I can say, AR, is that you have a rockin' doc who UNDERSTANDS. I found a cc on Amazon, used, for about $15, and later saw one for (sigh) about $2 at Goodwill. If you've got a store near you, check it out. Ours is GREAT for books!

I've always been a bit leery of "self help" books. Often too "preach-y perfect." But I started reading this one yesterday and have barely been able to put it down. In fact, woke up at 3 a.m. and ended up reading for another hour. Its good. Really good. THe author has an "invisible illness" and she quotes many others - several with lupus - throughout the book. It is written from the heart and the head.

I know we all don't have it yet, so I'm going to post a couple quotes that stuck out in the introduction. A discussion starting point, perhaps?

*****
From page xvi of the introduction:
"Most of us prefer to pass as healthy, living as normally and fully as we can under the circumstances. We hesitate to inflict our private anxieties on a health-conscious world that sees illness as a temporary abnormality and has little understanding of chronicity."

And a couple pages later - I thought of Ron, Lars and the other men on the forum:
page xxi:
"Passing as healthy is apparently a more urgent matter for men than for women."
*****

Do you try to "pass?" Does that increase or decrease frustration and/or stress for you? What happens to you when you're "outed" as having a chronic condition?
Hi Hatlady,
Im afraid i wasnt following this thread from the start,
Could you please supply me with the title of the book?
Thanks :)

Oluwa
05-13-2009, 05:25 AM
Morpheous..it is called The Chronic Illness Experience and how are you doing these days...

Hugs.
Love,
Oluwa

Morpheus
05-18-2009, 01:58 AM
Thanks Oluwa
Im doing quite well thanks, havent had a relapse in a while, and everything just seems to be looking bright :)
How have you been, been a while :)

Saysusie
05-18-2009, 08:34 AM
He Morpheus;
I'm glad to hear that you are doing well. It has been a while since we've heard from you. So good to see your post:laugh:

Peace and Blessings
Namaste
Saysusie

mountaindreamer
05-18-2009, 05:59 PM
hi morpheus,

oluwa was correct about the name of the book. The author's name is Sheri Register, the book is out of print, so has to be ordered online through a book store or amazon.com