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A Hidden Life

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 9, 2014.

  1. Firestormm

    Firestormm Guest

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    Cornwall England
    Well done. I think I would have to be having a pretty good - or pretty bad - day to confront someone like that. Though I have had my moments. Good for you :thumbsup::balloons:

    N.B. Is 'stink eye' a phrase that I should be familiar with? Is it something that old ladies do often? :lol:
     
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  2. Valentijn

    Valentijn Activity Level: 3

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    It's giving someone a dirty look. Google images has some good results (and some unrelated medical problems mixed in).
     
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  3. Hope123

    Hope123 Senior Member

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    Yeah, Valentjin explains the "stink eye" correctly!

    I usually prefer non-confrontation/ diplomacy myself but don't push me around because I will bite back if you push too far or try to threaten/ harm someone in my family or my friends. There are two types of reactions to a threat - fight of flight -- I'm a fighter for good or bad. When I was a young girl, this one boy on the bus kept teasing me and my friends; he was bigger than I was but he annoyed me enough that I caught him off guard one day, kicked him down, and punched him until he told me to stop. He never bothered us again. I was fortunate I didn't get in trouble for doing that and I never got into another fight in school as I learned other ways to deal with people.

    I have to say though that just as we don't want people to assume all people with ME/CFS are lazy, malingerers who want to stay home all day, we can't assume all the public hold negative perceptions/ misconceptions also. So I try to keep an open mind from that angle. As I said it's and individual decision who, when, how much to disclose but I did read a recent UK study about medical students where those who had known someone with ME/CFS outside of their training (e.g. friend, relative, social acquaintance, etc.) were more likely to have less biased views of the illness.
     
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  4. rosie26

    rosie26 Senior Member

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    It is kind of weird when you are talking with people who don't know just how sick you really are. There are some people in my acquaintance who I don't let on too about how sick I am - for my own personal reasons. I sometimes feel I am acting and I guess I am. So I am an actress lol ! It is weird.

    But mostly, most know I have been very sick and I have been very fortunate that they have treated me quite well really.
    But I must admit that I am very expressive in describing how ill I have been and I talk in a firm serious manner to get it across better. My onset was so frighteningly dramatic and it went on for years and years and years - so I get very serious when I talk about it.

    It is a huge illness, it feels bad, very bad. It is unbelievable what we have all gone through on our own. I find it so hard reading those who are now in the throes of the onset years. How did we all survive those severe years I do not know.
     
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  5. TheChronicSituation

    TheChronicSituation

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    Thanks for your comment, I can identify with the bus experience, I'm sure a lot of us who appear healthy probably can, being taken for a healthy person when we are in fact really struggling. It's not easy.

    You sound like you have good friends, Samuela, who at least make an attempt to understand. That's something. And yes, we can all probably identify with the experience of fighting, battling every second just to live some kind of life.

    Good luck.
     
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  6. TheChronicSituation

    TheChronicSituation

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    First of all, I never said that Irish society is not open minded. ME is misunderstood by most people in Ireland, but that is not a specifically Irish problem, it is worldwide.

    To be honest I don't recognize the picture of the country that you paint. You may have had some bad experiences that have led you to a particular perspective, but it is not my perspective and is not one that I communicated in my article. I don't talk about my condition for my own reasons, which I have outlined above, but it is certainly not because I have been victimized or attacked. I think that I experience the usual mixture of kindness, incomprehension, misunderstanding, indifference and genuine concern, that ME sufferers anywhere experience.

    Finally, this statement that you made, "There is an appaling education system in Ireland, most people don't learn science and basic manners and civility in schools and homes", is, quite frankly, nonsense. I'm sorry that you have such a jaundiced view of the country that we share, but you should realize that ME sufferers everywhere experience great difficulties, and that this is not a specifically Irish problem.

    I think you read my article and decided to interpret it according to your own agenda, rather than actually reading what I said.
     
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  7. TheChronicSituation

    TheChronicSituation

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    Yes, I do that too, tailor the explanation according to the person and the situation. I have found that if you don't enter into a huge long epic listing of symptoms and treatments, then most people are fairly understanding or neutral. As I have said before, it's not because I have been attacked that I don't talk about it, it is simply because sometimes it is too much trouble, and opens me up to being misunderstood.
     
  8. TheChronicSituation

    TheChronicSituation

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    Yes, exactly, I do feel that a lot of the time I am "acting" too. Though, in truth, that is probably true of a lot of people, healthy and well. We all have stuff going on under the surface that no-one else sees, though this is more true of us who have a chronic illness.
     
  9. TheChronicSituation

    TheChronicSituation

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    There is a great Seinfeld episode where Kramer is given "the stink eye" by the Van Buren boys.



    (I think it also happens with FDR (Franklin Delano Romanowski :)) in another episode, while he's blowing out his birthday candles)
     
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  10. TheChronicSituation

    TheChronicSituation

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    Actually, FDR doesn't give Kramer the "stink eye", it is something else entirely! Just found it.

     
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  11. meandthecat

    meandthecat

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    TheChronicSituation I loved your piece and the quiet measure of it. Isn't amazing how much we understand of each others suffering and of how difficult it is for those who have not been here, to comprehend even the smallest part.

    We tolerate the intolerable and we are not alone in that, but ours is a disease that has been denied so loudly that few can challenge that message without good reason. I was open about it at work and got a mixed reaction. On reflection if I could have hidden it I would have.

    I have found people to be generally shallow, they respond to what they see; status, strength and utility which is why the rest of the world spends so much time and effort faking it. Their response to weakness is generally to avoid it or exploit it. This view probably does not paint me in a good light....

    8 weeks ago I was diagnosed with cancer, I have been open about that too, and that also got a mixed reaction. Those that have a problem around illness were at least shamed into silence. Now I have a 'real illness' I can say M.E in the presence of doctors and the don't look as if they have bitten into a lemon and they include it in factors to be considered.

    The irony is that M.E has been and is worse than anything else I could experience but in the world of top trumps, Cancer is the head honcho.
     
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  12. TheChronicSituation

    TheChronicSituation

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    Thanks for your comment. Very sorry to hear about your cancer diagnosis, that´s a hard thing to have to deal with, on top of ME. It's sad that you have had to contract cancer for someone to take your medical situation seriously.
     
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  13. Patriciann

    Patriciann

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    I was diagnosed in 1998 and after falling so often I use a rolling seated walker with hand brakes to allow me to function away from my home. I use a cane on my better days and this combined with a shopping cart allows me to do shopping about four to six times a year -- yes, I drove about 25 miles total last year symptoms were so complex. I also ride a mobility scooter out in my gardens. Since the death of my husband I broke all the bones in my left ankle this required emergency surgery with a metal plate and screws to set m right again -- once of that was enough of the broken bones business and the walker, cane and mobility scooter are allowing me to endure this with some grace, and absence of any further broken bones thus far:) Loved the article and comments and coping with this on my own without good support makes this shared support invaluable. Thanks for sharing this!
     
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  14. Misfit Toy

    Misfit Toy Senior Member

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    I can relate to this. However, if you get close to someone, you have to tell them what's going on. For years I went to college part time, worked part time and had a social life, but like you, I would rest all day to have one.

    Finally, I got sick of the lie, the charade. It was too much work to not say anything.

    Like Tania said, if you are too sick to tell the lie or seem okay or not talk about why you can't do that walk or hike, that is exhausting, too. I can't lie anymore. I don't.

    I used to live behind a front to protect myself, but I realized, it was more about protecting THEM.

    I don't care if people can't handle it, or I should say I just let them know now. I don't tell complete strangers. But, I feel like I have to tell the truth because many people reach out via email and I can't say when they ask, "Hi, where have you been, I have not heard from you?" Oh, I was just in Spain traveling my ass off.

    So, why lie is where I am at now. Plus, I am just too exhausted to be anything than my true authentic self. I am tired of hiding out behind the curtain that never protected me much anyway.
     
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