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Posted 7/2/2007 4:19 PM (GMT 0)
I was wondering if anyone has persons or people in their life who challenge the reality of their illness and or attack you verbally when you are unable to function to the "expected" level.  I really can not keep functioning positively listening to tirades, criticzing my lack of a true medical issue.  The biggest criticism and demeaning remarks are centered around that I take too much medication.  It became such a burden that I stopped taking some of them months back and wound up very ill.  I am very tired and the stress of this verbal scabbles are draining me.  Do any other persons have to justify their medical treatment and if so , have any suggestions on how to stop family members manipulating you into doing too much because they don't see your illness as a real illness?  Best to every one

God  Bless

Julia

Posted 7/2/2007 4:32 PM (GMT 0)
Hi Julia,

Is this someone really close to you doing this? If its someone that you live with or see on a very regular basis and you are close enough, I would suggest having this person go to your appointments with you (given that you are comfortable with that) and maybe counseling. My hubby and I threw the idea around this weekend about going to see a counselor on ways he and I can cope emotionally with my illness. I am really warming up to the idea because coping seems to be hard.

If this person is not as close as say a husband, child, or parent... I would seriously look closely at this relationship and if its worth the effort trying to prove yourself to them. Even though I don't talk about my illness, I had to cut back on a lot of the fun things I did with my friends when I started really getting ill. One of my "friends" would say very hurtful remarks (manipulating is a good word!!) that I just said to myself that this "friendship" was causing more harm than good... and I dropped her as a friend. It was hard at first but when I realized that she wasn't truly my friend, it was a relief to know that I was able to recognize it.

I'm sorry that you are having to deal with this. I hope things get better for you and don't waste your time on the people that don't care, educate the people that do :-)

Take Care
Posted 7/2/2007 4:46 PM (GMT 0)
Julia,

The manipulation and insensitivity of a lot of the people in our lives is something that we all have to learn to deal with. When I first read your post I felt angry at the people in your life, but then I read Des's response and calmed down. Des, you gave Julia a very thoughtful and provocative answer.

I am fortunate to have married a man who meant his vows when he said "for better or for worse." But many friends are just fair weather friends, and as sad as that is, we can learn from that and try to be better friends ourselves. I have friends with whom I don't discuss my illness at all. One thing that I've learned to do with family and friends that matter is that I don't complain about feeling bad, but when I'm having a good day I'll tell them that I'm really feeling better today. They seem to appreciate that and it helps them understand that I feel bad much of the time but don't unload on them all the time. I guess the more positive I am the more support I seem to get.

I'm sad that this is going on in your life and agree with Des that some of these people aren't the kind of friends you need in your life and those that are important will want to understand what you're going through. At least you know that we understand, so I hope you'll come here when you need to vent or when you need sympathy. I know that I need to talk about how I feel so I do it here. And it helps.

Love,

Pat
Posted 7/2/2007 5:10 PM (GMT 0)
Thank you Des and Pat. These aren't friends. My one sister stoped speaking to me about a year ago, my illness was too "negative" for her. And now my only other sister says my problem is that I am on too much meds, and gets very angry with me when I have Neurological malfunctions. I sometimes forget or repeat the same things. I do have seizures so that plays into it. But when either of them need something I'm big sister again. It is very hurtful for me. I was hoping it was a stage, but it seems they just don't want to be bothered with me, and it is rubbing off on my daughter. I don't unload on any of them with my illness, but when it happens to be that I'm having a flare, seizure or complications I just have to deal with that. It means I have to say no to them sometimes. My daughter actually said you need to tell dad to quit his job to stay home to take care of you, I have a life and stuff to do. My daughter takes me to the doctor maybe once every couple of months. Lives here for free, goes to school and works. She's 20. I really have done everything I could for my family and have no idea when I became the family door mat.
Posted 7/4/2007 4:47 AM (GMT 0)

Hi Julia, Yes there have been some very painful moments in my life with people who "love me". It wasn't until last year that the doctors started talking lupus but it was about 8 years ago when I started having problems. My was was disabled and I did everything. Than I got sick one day and slept in the guest bedroom. My husband flipped out. we had a motor home and he came in the bedroom and said let's load up and go. I ouldn't even get out of bed let alone pack up the motor home! So he grabed a few things took off in the motor home alone. He would come back everyday for a few minutes just to see me still in bed. Always the same thing. Telling me I wasn't that sick and if I didn't go with him he'd get somone that would. After the third day he finally took me to the doctor. They sent me straight from there to the hospital. I spent the next 10 days with tubes everywhere. He came into my room in the hospital and said wow I thought you were just being lazy! This from a person that saw me wait on him hand and foot and do everything???? Frankly I think he was afraid I wouldn't be able to take care of him anymore and the thought horrified him. Of course I got better. He died a couple of years later. Than another time I went to my parents house because whenever I got to sick to cook for myself or take care of myself they helped me out. My sister flew in from florida to visit my folks once when I was there. She said she would only stay in the house as long asshe could put up with my being sick! If she couldn't handle it she would go stay in a motel. She barely even saw me. I spent most of my time in bed and I never cried to anyone about how I felt. I mean when you get so sick all you want to do it be alone and sleep and run into people when you eat drink or go to the bathroom. Than I have a brother who is a minister. He said I really needed to lay off the pain killers. So I didn't get my script renewed. within 3 weeks he had to drive me to the ER because I couldn't take the pain anymore. He never said anything again. So yes it seems like an on going battle. So I come here to talk to people about how I'm feeling. I try very hard to keep the rest of it to myself. Ihope you can get some support here. The people that are giving you trouble are the ones that have to deal with their own issues.

Huge hugs

carol

Posted 7/4/2007 9:02 AM (GMT 0)
Julia, I am going to say something that may sound harsh but you need to understand that I am dealing with similar stuff from my whole family except my grandmother, daughters (who are too young), and husband. I would ask your sister if she would like to discuss her concerns over the number of medications you take with your doctors on your next few visits. Tell her you would appreciate having her there since it would help your doctors understand the situation. Make sure your doctors tell her why each medication is given and what is wrong and exactly how bad it could get without the meds and also how you could die untreated. Also have them tell her your condition and how things are going to be. If she refuses to go tell her that she forfits the right to comment on your medications by not going to see your doctors with you. Tell your doctors that you give them permission to explain your condition and how it could go without treatment, with treatment, and basically what to expect to your sisters and daughter and husband too. This way you can tell them to call and consult your doctors if they get on your nerves too baddly. For the other sister if she does not wish to be around for you then you need to make it clear that it is a two way street and you will not be the one to do all the stuff. You need to step away from doing things when she needs help and make her deal with stuff herself since she clearly will not help you. Your daughter needs to have a stern talking to by your husband and also your doctors. Then if her attitude prevails she needs to pay rent or move out. Simply put she is living with you for free causing you stress and added burden, not contributing, unwilling to help by taking you to the doctor every few months, and has a bad attitude. She may be your daughter and you can still love her dearly but such an attitude is dangerous to your health. She is being a selfish, spoiled, obnoxious brat. She is old enough to know better. Maybe it is time to have it spelled out for her that you could die. Also maybe it needs to be spelled out that quiting is not something your husband can do. So she needs to change her attitude real fast or face the loss of her free ride. She is working which means she has income. Therefore she should be taking care of herself not living at home for free and treating her mother like garbage. It is totally unacceptable. If she gets mad send her here and have her talk to me. I am more than willing to give her a stern 'talking' to. Your husband really needs to be made aware of how your family is treating you, especially your daughter. If he already knows and is doing nothing then he needs his butt kicked. I will loan you the frozen boot my great-grandpa used to kick sense into those who were being idiots in our family when he was alive if you want it. Your whole family really needs a good education about your diseases. If they think your illnesses are not real then they need a good talking to by your doctors who will likely be more than happy to set them straight if it means keeping you on your medications and reducing your stress levels. Please understand I am not trying to offend or be mean, I just think you need to get this under control if these people are going to be part of your life immediately because otherwise your health will suffer constantly. When my family refused to listen or learn I walked away and limit contact to 2-3 times a year. Good luck. Stand up for yourself now before it is too late because if you don't they will abuse you until you are so ill you cannot continue. And what your sisters and daughter are doing IS A FORM OF ABUSE. Please do not allow them to get away with it, seek help if you need to but find a way to either give them a wake up call or cut off contact. Stop doing things for your sisters because they do not deserve it and are taking advantage. Besides which your health cannot handle it. Simply put, make them handle their own problems. They don't want to be there for you then they can be there for themselves- alone. It may be mean, it may be hard, but it is also self preservation. Family can be more harmful than friends in many cases. I hope you find a way to get through to them. Perhaps a gift of a book about your disease, or even something from your doctors explaining your conditions and medications. Sometimes information works. Othertimes cutting them off for being jerks wakes them up. Heck you never know maybe your husband would give them all a good talking to and shame them into behaving like family should and also make it clear just how serious your conditions are.
Posted 7/6/2007 3:00 AM (GMT 0)
I really agree... as harsh as it sounds the only thing you can do is provide your family with the information about your illness and treatment and let them form whatever thoughts or ideas they want to. You probably wont change their mind. The only control you really have is how you react to their bad and thoughtless behavior. I am constantly amazed at how many people are surrounded by such ignorant people. My family has been wonderful and I know each day how fortunate I am. I would kindly tell your sister that helping her only when she needs you is as negative as you telling her about the illness. Let her stew on that for a while. As for your daughter... if she is living at home for free she should be pitching in. Be it with errands, household chores or whatever else all adults at 20 usually do.

Come talk with us... we are supportive and understand.
Posted 7/6/2007 4:16 PM (GMT 0)
Julia: Don't have time to read all remarks. But yes they will test you, argue with you and insult you. My theory is either they are selfish and/or they are in denial not wanting to believe your ill and have limitations. Out of all the nightmares I have had in my life, this was the worst part to adjust to. Sometimes still is. I truly think they love us but just cant' get a grip on what we go through (like it is a big joke). I still have this problem with all my relationships even when things get serious. Then they yell at me that I am pushing too hard. Pretty crazy stuff if you ask me.

These are what they call toxic relationships and toxic people. Basically, I am flat out with it now. I am sick, this is my limitation, this is what I can or cannot do, period. End of story. They can boo hoo, gripe and get angry. I don't care. Love them, yes, but I don't care that they don't give a darn about me and are being selfish. (I actually tell them that) If they get nasty, I walk away from them until they get the picture. I won't tolerate someone's bad treatment. It is UNACCEPTABLE and it is that person's problem at that point, not mine. I always try my best to help others but everyone has a limit to what they can do. Chances are these people CAN handle their own issues, maybe just as well as you can.

The trouble I have is adjusting to this ' all of a sudden new person' that I thought I knew to be my loved one, family or friend come out and either start attacking me or accusing me. Like I was the one that changed. I am still me, just sick. It really hurts and angers me that they treat me different and/or take advantage of my illness. I am not lazy, on drugs, etc, don't care about my kids, just trying to get out of doing things, faking sick to get attention, and on and on... I am still the same hard working, goody too shoes, loving person that I always was. I get plenty of attention, perhaps too much some days. Where on earth do they get these ideas??? I have fought against all odds for 20+ years. Why would I pick now to change? These people should KNOW me. I was crushed when I found out they did not. Most of the time, I found out they were unable to handle their OWN issues and mine just brought theirs to light, or they were afraid it may be an extra burden for them if Cinderella retired. They were angry at that, not me, but I guess I was just easy to pick on me at the time, so what the heck.

Truth is, in my world, most are like this but some people are not. It has taught me to make better choices in my relationships and really value the good ones I have. Okay the family I can't choose who they are, but I can choose how to react and there is nothing written down that says I have to deal with their bad manners. Honestly, I think I'm much happier now and my relationships are two dimentional now instead of one. They have a choice and so do I.

It is a tough thing to stand up for yourself when you aren't well, but it gets easier. They eventually, hopefully, will adjust. Good luck - Kristin
Posted 7/6/2007 5:01 PM (GMT 0)
Julia--
My sister is the same way, and remember that what people feel about others is only true about themselves. We all see others through the lens of our own personhood and perhaps these issues she has with you are really issues she has with herself. I'm not meaning to get complex or play games, it's just a fact. I can only "know" you by making a lot of assumptions (conscious or unconscious) about you based on my own experiences and personality, unless you tell me otherwise. The issue of not listening to you and them not wanting to really know you for you is the real issue, and the issue that you can effectively confront. In my sister's case, she can't accept my illness, she was aloof and snobby and hateful to me for so long--which I didn't return, and now she can't accept this because it adds to her guilt. My children and I had serious friction, so bad I nearly had to call police, and they said the same things and I know they love me and it was physically and mentally very hurtful to me, but finally they exploded out with "but you're always sick" and I said, "yes, I am, and that is something you have to learn to accept." They got quiet and things changed. I expect the same sort of thing will crop up again as they constantly "forget" I'm ill, but now I know the magic words. The real issue is that people are afraid to get to know sick people because :
--they are afraid they will somehow get sick themselves, even just through "karma"
--they are afraid to love and care for someone that tears at their heartstrings, they are afraid of being hurt if the person gets sick or dies
--they are to selfish to care about anyone but themselves and must always be the greatest victim, in which case, they need to seek counselling

I have problems with short-term memory and my family has no patience with me at times, I can't imagine what it would be like for other people. I used to just get treated like I was crazy or had dementia and put in the mental hospital. I actually learned some coping things there so it wasn't a waste. I think confronting them on what their problems are is the best way to keep your sanity, for it is their problem. If it wasn't your illness they weren't accepting, it would be something else. They just aren't listening to you.

On that negative crap, I get that from my ex-husband and sister and father and mother and when I need them most, am most down, they won't speak to me, and for a while they would cart me to the mental hosptial. They didn't believe there was anything wrong with me because it would make them look like scumbags, which they were. Now, since diagnosis and treatment, they see me getting better.

I'm sure your sister, deep down, is so afraid and doesn't know what to say. She probably doesn't like to hear about you being sick because it makes her sad--which means she cares, so she acts like a b****. I was told I had a year to live, had a 4 year old boy living with me to support and went through interferon therapy without my family paying me one visit. It was too negative a situation, I was too depressed, not myself. I have a hard time forgiving them for that, I have to make a real effort and I confronted them angrily about it and some of my family apologized, and the part that didn't, I don't care.

My son has epilepsy in the parietal lobe and it makes his thought processes and decision making crazy sometimes and moods and the medicines don't help. I feel so much for you because I see what my son goes through on the medication. It is so hard, and now the side effects are so bad that he may have to change meds and then the doc wants to take away his license during that time for at least six months, so my son doesn't want to switch. It's just terrible and unfair, in a way, the way the whole thing is handled. And getting him social security is nearly impossible.

I hope this helps some and remember it is THEIR problem, and the problem is not that you are sick, but that they are not listening to you and are afraid to care about you. You might ask if you being sick scares your sister. Help her to realize. Let her know you being sick isn't negative, isn't positive, it just is what it is and she just has to accept it, you have. If you talk about it, its like talking abuot the sky is blue or its raining. It shouldn't make her feel guilty or bad. Perhaps she can't visit, reassure her that that's not a problem. Be reassuring so it feels safe for her to care. And don't put too much on her at once. And if that doesn't get through, then you can only speak to her about trivial things, and if that's not enough, then not at all. You pick your friends, not your family. Just know people here do care and do listen, they are so great, really great.

The worst part of being sick is taking care of the well people.
Posted 7/7/2007 3:21 AM (GMT 0)
Just keep in mind, when someone suffers, their loved one suffer with them. As frustrated as you are about your issues, is as frustrated as they are.
In your case, it sounds like your sister is taking it to the extreme and actually being cruel. By you being there for her when she needs you after she treats you like that, is something you need to take ownership of. We can only be walked on if allowed.

My family had hurt along with me, my sisters get very frustrated me with and my older sister talks to me like garbage. She also has a disabled dying child (my niece), so I hurt with her. Everyone faces their own demons and maybe your sister has some issues she chooses not to share with you b/c she doesn't want to budren you.
I know in my case, I am very selfish with my illness. It's always about me me me and I never really focus on my loved ones cause I am at times, so overwhelmed with my own illness. Maybe ask your sister if she is ok!

stay strong.

Jen
Posted 7/7/2007 6:04 PM (GMT 0)
Hi Julia,

   You have gotten some great advice on this issue. This happens to alot of people with these diseases. Some people just don't understand and never will unless they get educated on the diseases and the medicines.

  I hope your sisters will get educated on your diseases and the medicines you have to take to control your symptoms.  I'm so sorry you are going through this.

  I have found that sometimes we have to love certain members of our family from a distance. If someone is trying to bring me down with negative talk, I would rather them keep their distance. 

  I hope things turn around for you soon. Hang in there and take care. You will be in my thoughts and prayers.

                                                               Babs

Posted 7/7/2007 6:44 PM (GMT 0)

I can't begin to express how much all your postings helped and opened my eyes to different coping skills.  I want to thank you all so very much.  So many of you are in such difficult painful situations, thank you for sharing such personal stories, they really have made a difference.  I realize I have to be strong not only for others but for myself, to be blunt, I have to get a back bone.    Thank you all again and God bless everyone.

Julia

Posted 7/8/2007 2:36 AM (GMT 0)
I am new to all of this, I just joined. I read the reply posts to Julia20 and I have similar situations to everyone. I really feel for all of you. Now I think that I have somewhere that I can express my really feelings about my(possibly, not diagnosed yet) disease and my daughters diease(6 years old, dr thinks she has dle lupus). I also think that I will get the support I should have instead of what I am getting. I will explain my situation later when I have more time by myself. I don't feel all alone. Prayers for everyone.

Stacey
Posted 7/8/2007 3:57 AM (GMT 0)
Hi Stacey,

   Welcome to the forum. I'm glad you found us. You will find an amazing about of support and kindness here. This is an awsome group of people.

   I'm sorry to hear that you may possibly have lupus and your daughter may have DLE. I look forward to your next post and learn more about your situation and experiences.

   I hope you and your daughter get more definate answers soon and on the right treatment plan to feel better. Please post again soon and ask all the questions you want. We will help you in any way possible.

   Take care and you will be in my thoughts and prayers.

                                                               Babs

Posted 7/8/2007 4:43 AM (GMT 0)
Stacey, I also want to welcome you to the forum. Babs is right -- there are some wonderful people here who will want to get to know you and who will be very supportive and helpful. We understand what you're going through as much as anyone can. This forum has become a lifeline for me and I have made so many wonderful friends who really help me get through the tough times. I'm so glad you are here and look forward to getting to know you. When you are in a more comfortable place to post you might want to start your own thread and introduce yourself and tell us a little more about yourself. And venting is encouraged. This is a safe place where you can get things off your chest.

Hope to hear from you again soon.

Love,

Pat
Posted 7/9/2007 12:57 AM (GMT 0)
This is such an important topic and an issue that I'm guessing most of us have experienced at some time during our illness. One of the great blessings of this forum is finding out that we are not alone in this and that we have each other to help us work through these things. Stacey, I'm so glad you found us and I know that you will get a lot of support from everyone here. I'm also sorry to hear about your daughter. My 9 yr old son has had a lot of health problems including arthritis, so I'm here if you ever want to talk about your daughter - I know how terribly hard it is to watch your child suffer. Take care of yourself and I look forward to hearing more from you.
Posted 7/10/2007 7:53 PM (GMT 0)
Stacey, I'm so sorry to hear about your child's and your illness.  I hope to hear from you on this board, with all the wonderful people here, there are so many who can relate to what others are going through.  I hope all is well with you both and Gods speed to both of you.
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