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Thread: "The Chronic Illness Experience" BOOK CHAT

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    Post "The Chronic Illness Experience" BOOK CHAT

    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?
    ~"I find hope in the darkest of days, and focus in the brightest. I do not judge the universe." (Dalai Lama)

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    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
    I have Lupus. So *^#@! what.

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    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.

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    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!
    As I grow to understand life less and less,
    I learn to love it more and more.

    Age 29, Lupus for last 7 years

    Medications: Methotrexate, Lyrica, Celebrex, Flexeril, Theophylline, Bactrim, Xopenex, Lisinopril, Ultram

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    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...
    ~"I find hope in the darkest of days, and focus in the brightest. I do not judge the universe." (Dalai Lama)

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    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.
    Phyllis

    share a smile today

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    Quote Originally Posted by hatlady View Post
    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
    I intend to live forever, so far so good

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    Morpheous..it is called The Chronic Illness Experience and how are you doing these days...

    Hugs.
    Love,
    Oluwa
    I have Lupus. So *^#@! what.

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    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
    I intend to live forever, so far so good

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    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

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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