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Thread: you don't look sick

  1. #81
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    Alysia- Looking sick is superficial, you can dress up a corpse and put on just the right makeup for it to not LOOK sick. Doctors ... jeesh. What is important is your labs.

  2. #82
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    Alysia,

    I think you have it the perfect name for this weggie mess "the invisible illness". People always say "you look great!" I have to agree that I don't look sick. I may not like the weight gain, but keep trying to fix it. I just wish we could figure out some way that people could really understand what is happening to us. Sometimes I am not sure what is happening to me as I look so "normal".

    I stated before my wonderful husband of 48 years sometimes has a hard time remembering how bad this is. He does know of course and lets me know he had a moment of forgetting as I don't look sick on a daily basis.

    We have had a great cold/flu season with a few little changes. We keep antibacterial wipes in the car and both of us them when we are done in a public place/wash our hands good when we get home. I take a mask if we are in really congested places, don't use unless really feel I need to. We like to go on casino trips so mask/wipes seem to have worked good we haven't had anything in over a year. I did this when I still worked and everyone knew no using my phone. My co-workers were good about not trying to kill me off.

    Mary

  3. #83
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    Invisible illness is a real thing in organizational psychology, occupational health, and social psychology literature. It is known as “invisible” chronic illness (ICI). There is a lot of research on hidden identities, disclosure, and stigma related to chronic illness in the workplace and the intersection between work and home life. In workplace literature, a large focus lies on the laws that protect employees with health conditions under ADA. It's a bit ironic that ADA can leave people with invisible chronic illnesses without protection.

  4. #84
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    Very interesting information.

  5. #85
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    I got that answer just today..."you don't look sick"

    I told the person... I (feel sick) I didn't say (I look sick) in the mirror. When you start to live in my body I will listen to you, until that day, take my word for it!

  6. #86
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    I must be uglier than I thought. I don't get the "you don't look sick" much, if ever. I do try and hide it on a day to day basis, and it probably only really shows to my immediate family.
    I have noticed though that a lot of the time my wife is shocked when she comes in the room and I'm staring at the floor or looking like I Will doze off any second. Even though she knows what's up, it's easy to forget.
    It happens to me too. I think "I can do this or that" and find out half way through the project that I need a long break. It is humiliating not to be able to do things that even 1 year ago I could do.


    Sent from my iPhone while driving on the freeway.

  7. #87
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    Too funny maybe some of it is the people we are around. I know what you mean about not doing what you could it is tough.
    I am just now into my 9th year since they named this beast and even though I think I am doing pretty good not next to my friends.

    We are in a retirement park in the winter with lots of the other women running marathons (so to speak). I am riding bike some most days, but feel like I am a do nothing next to most of them. I know it is hard not to feel humiliated by it at time and have. I am trying hard not to compare myself to others around me here the same age. I think sometimes it is worry that this is disappointing to our spouses? My husband came in at lunch today excited that some of the gang want us to do a cruise with next winter, which I know will be fun. I of course now will have to hope I can keep up so know what you mean.

    Mary

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    Sure can relate to that Greenjeep.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

  9. #89
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    Quote Originally Posted by greenjeep View Post
    It happens to me too. I think "I can do this or that" and find out half way through the project that I need a long break. It is humiliating not to be able to do things that even 1 year ago I could do.
    And I thought I was the only one! Wow! Stop looking over my shoulder greenjeep!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


  10. #90
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    I so enjoyed reading all of your posts In response to Alysa's post. It is an extremely frustrating (putting it lightly) thing to deal with. The only people who truly understand me is my family. I am fortunate to have them keep me from over-doing it. I work part time with my sister. She is constantly making sure if I am hiding my lethargy, she can see that "look in my eyes", and makes me go home and take a nap. My Mother drives me places if I am too tired from meds. But so many do not have this support system, and it has to be such a terrible feeling to get your family saying "oh yea, she/he is not really THAT sick." Just a little arthritis and sinus problems, etc".....And when you fall asleep during a family "get togather", everyone thinks your just lazy. I don't spend the the night with friends who live too far for me to drive home after a visit. And the reason is, I STAY constipated, and do not want to get in an embarrassing situation if things "move" while im there. Its a very personal thing, but I need a plundger close by, and so I don't want to tell that to anyone but people who understand. Like Yall. Last nite I was so tired I went to bed at 8pm. No big deal, just needed extra sleep. But I woke up, and I was so tired and slept so hard, that I tinkled in my bed. Did not even wake up. This has happened before occasionally, so I have a pad under my sheets, but I still cried and cried because I felt so embarrassed. Even thought I was by myself. My ex-husband grossed out so bad when this happened for the first time, right before our divorce, that I guess I feel ashamed when it happens. But for me, its part of what wegeners has done to me after 23 yrs. I hope I am not being too open or personal, but today, when I go to work, all day I will be feeling upset that it happened. No one will know, but it still makes me upset. We deal with things like that, and I go to work, and people say, "you look great! I can tell you've lost 10 pounds!" But they don't know what happens to me sometimes, how im feeling inside. I know how you feel Alysa. I look strong on the outside, but im not on the inside sometimes. Today will be a day that I will be glad when it is over. :-(
    Life is a Gift~ Lilly

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