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Thread: "The Chronic Illness Experience" BOOK CHAT

  1. #11
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    Thanks Phyllis.... 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....

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

    Hugs....Lori

  2. #12
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    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.
    Phyllis

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  3. #13
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    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.

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



    Lori

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    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.
    Phyllis

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    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

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

  7. #17
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    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.
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

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    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.
    Phyllis

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    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.
    Last edited by mountaindreamer; 04-05-2009 at 04:38 PM.
    Phyllis

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  10. #20
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    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
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

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