Guest guest Posted October 8, 2002 Report Share Posted October 8, 2002 Hi Shanna, My heart goes out to you with your mom's denial. My mother in law is a bit like that. If it is something unpleasant, or something she doesn't understand, she doesn't want to deal with it. I think with IgAN it is complicated by the fact that unless we are currently in a flare up or ill, we look fine on the outside. With a broken leg or something, it is obvious, but with us, we look fine on the outside. I almost think it is a protection mechanism that if your Mom stays in denial, she won't have to look at what IgAN is/can do to her precious daughter. I have two daughters, one about your age, and from a moms perspective, I know I would rather have anything happen to me that to my daughters. It is very hard to see your daughter going through a hard time, so from a Mom's perspective, I can understand why this is so hard on your Mom. Unfortunately, that leaves you without support from her, which I am sure you would love to have. Shanna, I hope you will find the support and understanding you need here in this group, and remember that IgAN is NOT nothing, and really it is your mother's problem that she doesn't want to deal with it. Do not let her attitude cause you to feel like you are overreacting or making a big deal out of nothing. IgAN is a real disease, with real complications that does have an impact on your life regardless of whether your mother wants to admit it or not. We are all here to give you all the support you need! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2002 Report Share Posted October 8, 2002 Dear Shanna I think to some degree we can all relate to your problem here. My mother was exactly the same, you see here is the deal, we look fine (normally), so other people cant equate sickness with people who for the most part look ok. IGAN is of course the hidden disease, i.e. internal, if you had a broken leg you would probably get more understanding. In my mother's case it was her denial that something was actually wrong with me, for ages she would not heed my request to stay away when sick, and it took my husband's intervention in the end to put her right, nicely of course. I actually directed her to some written work on IGAN, which she read, and I think now has a better understanding. I don't think people mean to be unkind or thoughtless, and it may well be that you will just have to beetle along in your own sweet way. We understand, you know what is happening, what does it matter really if others choose to believe or disbelieve. Hope this helps. UK Moderator How do I handle this? Ok, this might not be anything but it has really gotten to me. As most of you know I am 22, have known I have had IgAN for about 6 months. I am doing good right now. Constantly in doctors offices, etc. though. I have a wide variety of family, friends, church people etc. that I deal with on a normal basis, but like all people there are some you dont run into but just a couple times a year. OK getting to the problem. I dont talk much about this disease, but when someone ask I try to do my best to explain it to them. For about a month now, my mom has been really riding me about everything.. we can be walking through a store, dr. office, anything and if I see something on Kidneys I stop, pick it up read it, etc.. She got mad the other day and was like this is so dumb.. the more you think about this the more you are going to act like something is wrong with you. Then last night I had a uncle come into town and stayed with us. Everyone knew that for the past couple of years I have been really sick and when he was here last I was in the hospital. He asked me about it and I told him some things.. my mother, interrupted me and told him that it was nothing, that I have joined this " chat " room and I keep getting these ideas that one day something will happen. (I do not think it will, and I do not lead people on to believe it, I tell them the truth, that some people after a long term do have to make some choices) She proceeds to tell him that it is really nothing to it, and I am just making things up. Not ONCE has my mother looked on the internet about this, Not ONCE has she read anything about it, and yet she says these things. She gets really nervous when I get sick, she see's me when I cant hardly get out of bed. But she still thinks it is nothing and I am paranoid. I am sorry I have rambled like this. Perhaps I should not worry about what she thinks. I will not give up this group. You guys have been the best to me, with personal questions (Connie) to great friends(Marty, Pierre and ) Everyone is aweseome. Does anyone have any advice for me. Shanna Baton Rouge, LA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 Well I guess know how to spell denial now. Keep one thing in mind, denial is one of the stages of grieving and maybe, just maybe, she's grieving for you. I gotta tell ya', I expect something good to happen too. How do I handle this? Ok, this might not be anything but it has really gotten to me. As most of you know I am 22, have known I have had IgAN for about 6 months. I am doing good right now. Constantly in doctors offices, etc. though. I have a wide variety of family, friends, church people etc. that I deal with on a normal basis, but like all people there are some you dont run into but just a couple times a year. OK getting to the problem. I dont talk much about this disease, but when someone ask I try to do my best to explain it to them. For about a month now, my mom has been really riding me about everything.. we can be walking through a store, dr. office, anything and if I see something on Kidneys I stop, pick it up read it, etc.. She got mad the other day and was like this is so dumb.. the more you think about this the more you are going to act like something is wrong with you. Then last night I had a uncle come into town and stayed with us. Everyone knew that for the past couple of years I have been really sick and when he was here last I was in the hospital. He asked me about it and I told him some things.. my mother, interrupted me and told him that it was nothing, that I have joined this " chat " room and I keep getting these ideas that one day something will happen. (I do not think it will, and I do not lead people on to believe it, I tell them the truth, that some people after a long term do have to make some choices) She proceeds to tell him that it is really nothing to it, and I am just making things up. Not ONCE has my mother looked on the internet about this, Not ONCE has she read anything about it, and yet she says these things. She gets really nervous when I get sick, she see's me when I cant hardly get out of bed. But she still thinks it is nothing and I am paranoid. I am sorry I have rambled like this. Perhaps I should not worry about what she thinks. I will not give up this group. You guys have been the best to me, with personal questions (Connie) to great friends(Marty, Pierre and ) Everyone is aweseome. Does anyone have any advice for me. Shanna Baton Rouge, LA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 Hi Shanna Though I'm new to the group, I may be able to help on this one, I get it too! I'm 28, and from the UK, and have always been very activem fit and healthy, until a few Months ago. I was diagnosed with Iga and also have nephrotic syndrome, a very heavy protien leak, as much as 31 grams a day, but down a bit at the moment. The first few weeks were fine, but as time wears on, and I try to go back to normal, I'm being accused of not really being ill, and exagerating symptoms...see a pattern forming. I think the reasoning is that if you can't see it, there can't be much wrong. You're young too, so it's sometimes harder, i think for young people to be 'ill' without an obvious, visual cause. Whenever I've broken things from playing rugby(and i've done that plenty of times!) I get much more support, but I expect it's because there a large plaster cast attched to me and one can see it! I also think that some people deal with the prospect of disease and illness by almost denying it, and though it hurts you, it may just be her way of coping with it. My own Mother is always cheerfully looking at 'the bright side' and saying that of course i'll be ok it can get too much sometimes. I don't say anything, but feel like saying more, but I think they only care and deal with it how they wish too. If I was a parent, I think i might not want to accept these things happen to my baby! Hope this helps a little And note to Pierre, if you're reading, glad to here it went well the other day, hope you're feeling better soon. all the best, > Ok, this might not be anything but it has really gotten to me. As > most of you know I am 22, have known I have had IgAN for about 6 > months. I am doing good right now. Constantly in doctors offices, > etc. though. > I have a wide variety of family, friends, church people etc. that I > deal with on a normal basis, but like all people there are some you > dont run into but just a couple times a year. OK getting to the > problem. I dont talk much about this disease, but when someone ask I > try to do my best to explain it to them. For about a month now, my > mom has been really riding me about everything.. we can be walking > through a store, dr. office, anything and if I see something on > Kidneys I stop, pick it up read it, etc.. She got mad the other day > and was like this is so dumb.. the more you think about this the more > you are going to act like something is wrong with you. Then last > night I had a uncle come into town and stayed with us. Everyone knew > that for the past couple of years I have been really sick and when > he was here last I was in the hospital. He asked me about it and I > told him some things.. my mother, interrupted me and told him that it > was nothing, that I have joined this " chat " room and I keep getting > these ideas that one day something will happen. (I do not think it > will, and I do not lead people on to believe it, I tell them the > truth, that some people after a long term do have to make some > choices) > She proceeds to tell him that it is really nothing to it, and I am > just making things up. Not ONCE has my mother looked on the internet > about this, Not ONCE has she read anything about it, and yet she says > these things. She gets really nervous when I get sick, she see's me > when I cant hardly get out of bed. But she still thinks it is nothing > and I am paranoid. I am sorry I have rambled like this. Perhaps I > should not worry about what she thinks. I will not give up this > group. You guys have been the best to me, with personal questions > (Connie) to great friends(Marty, Pierre and ) Everyone is > aweseome. > Does anyone have any advice for me. > > Shanna > Baton Rouge, LA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 I agree with a lot of what's said here. The problem too, is what we have takes a little bit of understanding from us, let alone someone who has no idea of it. Peoples reactions to stressful situations can be surprising and the very people you think that you can rely on, can sometimes be the very people who have the greatest difficulty dealing with the problem. An example in my family was when my mother had cancer and we all rallied round and supported my parents, the only person who didn't and just couldn't handle it was my brother.........in all other areas of life he would be the person that you would think could handle any problem...........it shocked us a bit but everyone has to be permitted to deal with stress in their own way........there isn't a right or wrong way, even if it is disappointing way sometimes. On the other hand there are people who just don't want to know about problems, the 'Ostrich Syndrome' and they probably aren't a part of this group and then there are others like ourselves who feel being informed is better........its certainly helped my well being to know exactly what's wrong and removed any doubts about my sanity when on some occasions in the pre diagnosis past, Consultants suggested all my problems were in the mind! Bye for now, Sally. Re: How do I handle this? Hi Shanna Though I'm new to the group, I may be able to help on this one, I get it too! I'm 28, and from the UK, and have always been very activem fit and healthy, until a few Months ago. I was diagnosed with Iga and also have nephrotic syndrome, a very heavy protien leak, as much as 31 grams a day, but down a bit at the moment. The first few weeks were fine, but as time wears on, and I try to go back to normal, I'm being accused of not really being ill, and exagerating symptoms...see a pattern forming. I think the reasoning is that if you can't see it, there can't be much wrong. You're young too, so it's sometimes harder, i think for young people to be 'ill' without an obvious, visual cause. Whenever I've broken things from playing rugby(and i've done that plenty of times!) I get much more support, but I expect it's because there a large plaster cast attched to me and one can see it! I also think that some people deal with the prospect of disease and illness by almost denying it, and though it hurts you, it may just be her way of coping with it. My own Mother is always cheerfully looking at 'the bright side' and saying that of course i'll be ok it can get too much sometimes. I don't say anything, but feel like saying more, but I think they only care and deal with it how they wish too. If I was a parent, I think i might not want to accept these things happen to my baby! Hope this helps a little And note to Pierre, if you're reading, glad to here it went well the other day, hope you're feeling better soon. all the best, > Ok, this might not be anything but it has really gotten to me. As > most of you know I am 22, have known I have had IgAN for about 6 > months. I am doing good right now. Constantly in doctors offices, > etc. though. > I have a wide variety of family, friends, church people etc. that I > deal with on a normal basis, but like all people there are some you > dont run into but just a couple times a year. OK getting to the > problem. I dont talk much about this disease, but when someone ask I > try to do my best to explain it to them. For about a month now, my > mom has been really riding me about everything.. we can be walking > through a store, dr. office, anything and if I see something on > Kidneys I stop, pick it up read it, etc.. She got mad the other day > and was like this is so dumb.. the more you think about this the more > you are going to act like something is wrong with you. Then last > night I had a uncle come into town and stayed with us. Everyone knew > that for the past couple of years I have been really sick and when > he was here last I was in the hospital. He asked me about it and I > told him some things.. my mother, interrupted me and told him that it > was nothing, that I have joined this " chat " room and I keep getting > these ideas that one day something will happen. (I do not think it > will, and I do not lead people on to believe it, I tell them the > truth, that some people after a long term do have to make some > choices) > She proceeds to tell him that it is really nothing to it, and I am > just making things up. Not ONCE has my mother looked on the internet > about this, Not ONCE has she read anything about it, and yet she says > these things. She gets really nervous when I get sick, she see's me > when I cant hardly get out of bed. But she still thinks it is nothing > and I am paranoid. I am sorry I have rambled like this. Perhaps I > should not worry about what she thinks. I will not give up this > group. You guys have been the best to me, with personal questions > (Connie) to great friends(Marty, Pierre and ) Everyone is > aweseome. > Does anyone have any advice for me. > > Shanna > Baton Rouge, LA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 Shanna, I can empathize. I also think it is true about " looking " ok on the outside as everyone else has mentioned....it is so hard for others to relate when you look fine....sometimes I wish I could wear my scared kidneys on the outside just so they could see. Your situation is the very reason why this group is so very important to me. I know I can come here and these guys know exactly what I am going through and can help me with whatever at the time...whereas people I work with or friends/family just do not know how to relate and even say...well...you look great! My father is the type of person that if you act like nothing is wrong...then...you guessed it ...nothing is wrong. I have to admit he did come see me a lot when I was on the meds because with the meds I was on ...it was pretty obvious something was wrong but since the side effects have gone...well...I must be ok now. He even tells people she is fine now. My mother is a little different. When I was diagnosed she was scheduling an appt with her doctor to get typed for kidney transplant. For a while I think she was even planning for a funeral. When I finally convinced her that I was not near that point then it went to the other extreme. She is always asking me why I cannot have children. She really does not understand. If she knew how badly I did want children and realized how hurtful that question was I know she would never ask again.... Also....remember those closest to you can say the most hurtful things and never even realize it. I would guess your mom just doesn't want to believe you have a disease that can be fatal. I don't think it is because she really thinks you are wanting sympathy but she does not want to believe that her little girl (no matter how old you are) has a disease classified as a " silent killer. " And she probably deals with it in a denial type state. It is too bad for you.....but as you can see from all of our postings...people without our disease really cannot relate and it's easier for them (not realizing how hurtful it is for us) to act like nothing is wrong. I feel like I have been rambling...I just wanted to let you know that I deal with the same issues with my Dad and some friends...it has been a little over 2 years now and it still hasn't changed...for me, just knowing everyone here exists gives me a great sense of knowing people out there do know and do care. Janie How do I handle this? Ok, this might not be anything but it has really gotten to me. As most of you know I am 22, have known I have had IgAN for about 6 months. I am doing good right now. Constantly in doctors offices, etc. though. I have a wide variety of family, friends, church people etc. that I deal with on a normal basis, but like all people there are some you dont run into but just a couple times a year. OK getting to the problem. I dont talk much about this disease, but when someone ask I try to do my best to explain it to them. For about a month now, my mom has been really riding me about everything.. we can be walking through a store, dr. office, anything and if I see something on Kidneys I stop, pick it up read it, etc.. She got mad the other day and was like this is so dumb.. the more you think about this the more you are going to act like something is wrong with you. Then last night I had a uncle come into town and stayed with us. Everyone knew that for the past couple of years I have been really sick and when he was here last I was in the hospital. He asked me about it and I told him some things.. my mother, interrupted me and told him that it was nothing, that I have joined this " chat " room and I keep getting these ideas that one day something will happen. (I do not think it will, and I do not lead people on to believe it, I tell them the truth, that some people after a long term do have to make some choices) She proceeds to tell him that it is really nothing to it, and I am just making things up. Not ONCE has my mother looked on the internet about this, Not ONCE has she read anything about it, and yet she says these things. She gets really nervous when I get sick, she see's me when I cant hardly get out of bed. But she still thinks it is nothing and I am paranoid. I am sorry I have rambled like this. Perhaps I should not worry about what she thinks. I will not give up this group. You guys have been the best to me, with personal questions (Connie) to great friends(Marty, Pierre and ) Everyone is aweseome. Does anyone have any advice for me. Shanna Baton Rouge, LA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 Hi Shanna, My mother likes to be the centre of attention, and expects to be sicker than the rest of us due to her extremely " advanced " age of 75. I don't look sick, and I am younger than her, therefore I can't possibly be sick. After 3 years I have just can't be bothered anymore, so I generally ignore her which is fairly easy seeing as she is on the other side of the country in a different time zone! I don't mention IgAn unless someone asks, and then I give them a copy of a brochure I downloaded from the Australian kidney foundation which I thought was very good, (if you like I can forward it to you as an acrobat file). Reply-To: iga-nephropathy To: iga-nephropathy Subject: How do I handle this? Date: Wed, 09 Oct 2002 01:15:37 -0000 Ok, this might not be anything but it has really gotten to me. As most of you know I am 22, have known I have had IgAN for about 6 months. I am doing good right now. Constantly in doctors offices, etc. though. I have a wide variety of family, friends, church people etc. that I deal with on a normal basis, but like all people there are some you dont run into but just a couple times a year. OK getting to the problem. I dont talk much about this disease, but when someone ask I try to do my best to explain it to them. For about a month now, my mom has been really riding me about everything.. we can be walking through a store, dr. office, anything and if I see something on Kidneys I stop, pick it up read it, etc.. She got mad the other day and was like this is so dumb.. the more you think about this the more you are going to act like something is wrong with you. Then last night I had a uncle come into town and stayed with us. Everyone knew that for the past couple of years I have been really sick and when he was here last I was in the hospital. He asked me about it and I told him some things.. my mother, interrupted me and told him that it was nothing, that I have joined this " chat " room and I keep getting these ideas that one day something will happen. (I do not think it will, and I do not lead people on to believe it, I tell them the truth, that some people after a long term do have to make some choices) She proceeds to tell him that it is really nothing to it, and I am just making things up. Not ONCE has my mother looked on the internet about this, Not ONCE has she read anything about it, and yet she says these things. She gets really nervous when I get sick, she see's me when I cant hardly get out of bed. But she still thinks it is nothing and I am paranoid. I am sorry I have rambled like this. Perhaps I should not worry about what she thinks. I will not give up this group. You guys have been the best to me, with personal questions (Connie) to great friends(Marty, Pierre and ) Everyone is aweseome. Does anyone have any advice for me. Shanna Baton Rouge, LA. _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 Wow the responses were great everything from the ostrich syndrome to grieving! I read this yesterday and had to leave for a Doctors Appointment, so I didn't get to respond, however I thought about you all the way home and while I was sitting in the waiting room. I only have a little to add...Denial...of course there is denial, grieving I'm sure of it, guilt probably. For as up front and honest as I am about my own condition, many times through the years I've been very surprised at new developments. Like when I was working late one night and my Neph called me at work to say my last results were not good and he wanted me to have a biopsy. No one was more shocked than me! I was working late for goodness sake, gosh, if I've have known that I was that sick, I would have taken a day off! (just kidding) I'm the patient and it's hard to believe that at some of my appointments that we're talking about me and what could happen down the road. So of course it has to be hard for others. Since for the most part IgAN patients LOOK healthy, act normal, and function like everyone else in society, it's very hard for people to understand that you are really and truly ill. Try to educate her, maybe by some gentle prodding at first. Sometimes when as a parent I get out of line, my daughter brings me back to reality by saying something to the effect of " Mom, I really need to talk openly and honest to you, because I really want you to help me work through this. I think that the key words are " need and want " it is really hard to turn your back on someone when they say that they need you or your support and that they want your help. Keep a positive attitude about this situation, work on her gently and she will come around. Good luck kido, you how to reach me if you want to talk. Connie, USA How do I handle this? Ok, this might not be anything but it has really gotten to me. As most of you know I am 22, have known I have had IgAN for about 6 months. I am doing good right now. Constantly in doctors offices, etc. though. I have a wide variety of family, friends, church people etc. that I deal with on a normal basis, but like all people there are some you dont run into but just a couple times a year. OK getting to the problem. I dont talk much about this disease, but when someone ask I try to do my best to explain it to them. For about a month now, my mom has been really riding me about everything.. we can be walking through a store, dr. office, anything and if I see something on Kidneys I stop, pick it up read it, etc.. She got mad the other day and was like this is so dumb.. the more you think about this the more you are going to act like something is wrong with you. Then last night I had a uncle come into town and stayed with us. Everyone knew that for the past couple of years I have been really sick and when he was here last I was in the hospital. He asked me about it and I told him some things.. my mother, interrupted me and told him that it was nothing, that I have joined this " chat " room and I keep getting these ideas that one day something will happen. (I do not think it will, and I do not lead people on to believe it, I tell them the truth, that some people after a long term do have to make some choices) She proceeds to tell him that it is really nothing to it, and I am just making things up. Not ONCE has my mother looked on the internet about this, Not ONCE has she read anything about it, and yet she says these things. She gets really nervous when I get sick, she see's me when I cant hardly get out of bed. But she still thinks it is nothing and I am paranoid. I am sorry I have rambled like this. Perhaps I should not worry about what she thinks. I will not give up this group. You guys have been the best to me, with personal questions (Connie) to great friends(Marty, Pierre and ) Everyone is aweseome. Does anyone have any advice for me. Shanna Baton Rouge, LA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2002 Report Share Posted October 11, 2002 One comment I have about this thread is that, people have various ways of reacting to disease in others, especially relatives. You can't really judge a book by its cover. Some people who may appear not to pay much attention or care much, may actually care a lot. Pierre Quote Link to comment Share on other sites More sharing options...
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