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A disease with two faces? Re-naming ME/CFS
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Looking Bad

Discussion in 'General Symptoms' started by u&iraok, Oct 18, 2011.

  1. u&iraok

    u&iraok Senior Member

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    I know this is the you-dont-look-like-you're-sick illness, but I look bad. Strangers stare at me and if I happen to go to a hospital to visit someone the nurses stare and stare without looking away. It took me a bit to get used to, especially when friends give me a look and look away, I think, are they mad at me?

    Today I was friendly with the cashier until he looked at me when he handed me my receipt and he gave me this look like he was disgusted with me and I realized, oh, yeah, it's only because of how I look.

    And I like it. I mean, I have some pride but this illness takes you to other levels of existence and importance. What's important is that I have validation for how I feel with healthy people who don't understand that the 'guts' of a person are on the inside, only the skin is on the outside and this ain't no skin disease.

    Once a friend overheard me asking my husband how I look and when he said, 'BAD!' they scolded him. He had to tell them I'm not upset by it. And I had to tell them I want to hear the truth but what I really meant is, I like to hear it so people know I'm really sick.

    My only thing is, I'm not as sick as some others (yet) and maybe they need to look bad more than I do. But at least I can tell people I have ME/CFIDs/CFS so they can see me and see sickness.

    Anyone else look sick?
     
  2. kat0465

    kat0465 Senior Member

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    I didn't the first few years.that's why my family and friend didnt think I was sick.
    However it's been over 20 years for me now, and its really aged me beyond my 46 years :( friend my age look great.

    I guess if I could exercise, and didn't feel like I was dying every day I'd look pretty good.lol

    All I know is I'm tired of being sick!!


    Kat
     
  3. redo

    redo Senior Member

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    Me too! Sick and tired. Lost almost a decade. Lost my education. Lost most of my outlooks of a normal life after the illness. Don't get me wrong Kat, but it feels good to see others being in the same boat.

    I need to get out of this, and I need it soon. This is not how my life was supposed to be.
     
  4. jimells

    jimells Senior Member

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    My former partner used to tell me, "you look pale". I would usually answer, "I feel pale". And I did. When I was still able to work part time, some co-workers could tell when I had a migraine. They said my eyes looked glazed over, probably because I was mostly in a daze. Usually I have dark circles under my eyes, but that is hard to see because of my glasses.

    I've never been aware of people staring at me. That would probably freak me out. I'd have to ask them what it was about me that looked bad.
     
  5. u&iraok

    u&iraok Senior Member

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    I'm greyish-pale but I go in the sun to help that. I wear glasses, too. At first it hid how my eyes looked but now I have squarish glasses with thick rims where the dark circles are and they still stare so what does that say about how I look! It was really weird at first because people are taught not to stare at a handicap, etc. yet these are all out stares, some shocked and disgusted, only a few are compassionate stares. Maybe they're afraid they'll catch something. But I'm used to it now.

    I can tell when my husband has a migraine, he looks really sick. He tries to hide it but can't. Also, if you feel his temple when he has a migraine you can feel the vein pulsing.
     
  6. Sasha

    Sasha Fine, thank you

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    Apparently I look great! And I feel like s**t!

    I'm sorry to hear how unwell some people are looking - it must be very dispiriting. I have a friend who I always thought beautiful, who developed in her thirties a non-ME, seriously painful and debilitating condition. I saw her at her worst with her condition and she looked awful - she looked to have aged about 10 years and really looked ill. Her medical condition has nearly resolved now, some years later, and she is back to her beautiful self. Just shows how much of this stuff can be reversible. I hope this works out well for everyone in the end!
     
  7. CAcfs

    CAcfs Senior Member

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    I look really sick too. To original poster, so it's basically just that your face looks washed out and the bad dark rings around the eyes? That is basically what I have, and also the whites of my eyes aren't very white, eyes are kind of squinty. And also, my face looks a little puffy/boated, though I'm normal weight/thin-ish.

    I can tell that people are a little alarmed by how I look. I think they mainly assume either I'm someone who takes really bad care of themselves, like never sleeps and works 3 jobs and lives under a bridge and eats french fries and canned green beans only, or they might think I am on drugs, like in a sad way (painkillers, heroin, etc). I actually do think people think that when they see me, even though I am dressed not too badly. It's like once they make eye contact, they look away quickly.

    I am actually curious what percentage of us look sick vs. don't. I almost think that the subset of us that look sick must have the same thing wrong, or a similar thing wrong. I am thinking maybe it's a vitamin or amino deficinecy, or some kind of gut infection or problem? I would LOVE to know! If you look sick too, what do you think the cause is?

    I kinda feel for me, one of my main problems is some kind of seratonin and tryptophan deficiency, gut issues, and B deficiecies. Not that I know the reasons for any of those things, because I take supps, eat right, etc. I'm wondering if I'm reacting to something I"m eating. Need to do an elimination diet (just too tired to start). I think if I could just get my body to absorb/use the aminos, the vitamins, something would magically click and my face would look healthy again. When I am able to get good sleep at a regular time (not keeping weird hours), and simultaneously get lots of exercise, it tends to help my face look a little better, for like a day, till it goes back to normal.

    What do you all think is causing your sick looks?

    Also, what is your primarily type of fatigue? For me, it is drowsiness, like where your eyes feel like they are going to loose focus at any moment due to tiredness in the brain (interestingly, the few others I've talked to where that is their main issue, seem to look like me). I feel like those of us that look sick must all have something in common unique to us.

    I am thinking those that look kinda healthy may have something different going on than me, and those people that look healthy do seem to be the majority. Those are the ones that I feel often have the exaggerated post exertional malaise.....whereas for me, if i'm sick, i'm sick....and often the "starting" is the hardest part, not the "after." Sometimes I really feel like I don't fit in with most people with CFS.

    I do feel like we need to band together to figure this out. It's pretty alarming, and there MUST be a cause to it.
     
  8. springblossom

    springblossom

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    I get a divided opinion. My mother in law the other day said I looked better, but I felt worse. When I was working, people regularly told me I looked terrible - pale, eye twitching, dark rings. I felt terrible too!

    When I am feeling particularly low, I find it very hard to open my eyes properly - the brightness of the day hurts them too much and when I take off my sunglasses this is obvious. Alongside that, I don't dress "up" anymore, which I think may put people who knew me when I was better at a slight disadvantage because they were used to seeing me with make up/hair done.
     
  9. sickness

    sickness

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    When I was still able to work, I would get people telling me I looked awful. But only if I hadn't put make-up on! On the days when I was wearing make-up, no comments. It used to make me laugh, because basically it meant that the 'real' me looked terrible.

    take care, ness
     
  10. Sasha

    Sasha Fine, thank you

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    I have dark circles under my eyes (which people mostly don't see because I wear specs) and I think that is supposed to be caused by dehydration, and so for many of us may be to do with low blood volume due to dysautonomia. I hope that the dark circles would resolve if the underlying problem got fixed.
     
  11. u&iraok

    u&iraok Senior Member

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    I'm curious too about what causes the looks and why some look bad and some don't. I see some of the other posters said it was when they were working that they looked bad. I work 4 full days a week and noticed that when I had a week off work and went on a staycation and completely rested I looked better. But I needed more than a week off to catch up on rest. I am tapped out with working and can't do anything but lay down when I'm not working. I have to be so careful with 'spending' a half hour or hour or sometimes 2 hours doing something or other that I need to do. I have to take a nap every day or I'm more messed up (lay down on a couch in an empty office). One of the problems with working besides the obvious and including my commute is having to get up at 6:30 because I can't fall asleep earlier than 11:00 or 11:30. If I could just get a few more hours of that good morning sleep...

    I do look pale and tired with dark circles but it's more of a bad look to the eyes. There used to be a forum for people with pituitary problems and my eyes looked like the guy who ran the forum. My tests did show an anterior pituitary problem but I looked fine when the test was done, before I got ME. Maybe it caught up with my as I get older. Test done at age 36, now I'm 47. Curse my defective memory, I can't remember the forum but it was under a hypothyroid forum and had an explanation point in it. And when my thyroid was really messed up is when my eyes looked the worst.

    About 5 years before I got ME/CFS I got systemic candida and had hormone problems, adrenal problems and nutritional deficiencies but I looked really good! It's almost like my immune system was working so hard I glowed! Candida was cured though my gut doesn't work optimally, I have to baby it as much as possible. If I get overtired, it acts up with IBS.

    So I don't know what causes the bad looks. French fries and canned green beans, lol. I eat really well and take all my vitamins and get a lot of protein since I have a problem with that, and fats, antioxidants, a lot of B12, other Bs, etc., but while that would help a healthy person, for us, it's bare minimum.

    Heroin, ah, maybe that's why I get the bad looks! You know, it does look similar to a heroin addict.

    I have all the fatigues. I get the one you describe, drowsiness, and feeling spaced out and like I can't focus with my eyes, but also wired and tired, molasses fatigue, flu-like fatigue, brain-tired, did I leave any out? I don't have the problem starting thing but definitely have PEM pretty badly.
     
  12. u&iraok

    u&iraok Senior Member

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    I'm always thirsty. My doctor said an average healthy person should take in 1/2 cup of water every half hour, so I use that advice to take in a little water all day rather than a big glass here and there. I sip water all day and I make it salted water to help with the problems we have. This works well for me.
     

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