I’m a sister of a lupus patient. I’m starting to see her personality go from being happy and up beat to giving up and feeling alone. What do I do as a sister to get her back were she ounces was?
she is sooo lucky to have a sister who cares!! Bless you!
Hi there Lovingkita, Yes i agree she is so lucky to have a sister like you. Its hard for you both isnt it? I dont think there is alot you can do except be there for her, and let her talk when she needs to. I expect she is feeling all sorts of things. The trouble with having Lupus, no one day is the same, so when someone has Lupus, they just cant plan anything, which is so frustrating. I expect your sister feels down from time to time due to her situation, its what is known as Reactive Depressions, basically when you are reacting to something, not to be mistaken for a chemical imbalance type of depression. Thats another reason why its so wonderful she has you there for her. Alot of people who have Lupus just feel so alone, as they feel that no-one really understands what they are going through. Have you ever been to a Rheumatologists appointment with her, if she would let you, it might give you abit more insight as to whats going on with her condition and what she might need some support with. We all tend to not talk to family as we worry about worrying them. But, if you tell her that you are there for her no matter how tough things get, then she might open up, and also this might be a huge relief to her as well. Ask her what she needs from you, as like i said no two days are the same with Lupus, plus no two people are the same, they might have very similar symptoms, but everyone is different in the way that things affect them. How old is your sister? if you dont mind me asking? And how long has she been diagnosed with the Lupus? There are all sorts of factors to consider when someone has Lupus. I know when i was first diagnosed and realised that i could no longer do the things i used to be able to do, i did feel very low at times. As i said though we are all different. Anyway i hope this has helped a little, if you would like to talk more, feel free to send me a post or a message, and if you would like me or any of the others to answer anything else that might be worrying you, please feel free to come and have a chat, thinking of you. Take care, bye for now, love and hugs Astrid40xoxo
Hi Lovingkita!!! First of all I would like to say that your sister is very lucky to have a sister like you, which cares and want to help her :). I have lupus...and the same that is happening to your sister is happening to me...I wish I would know the answer for your question, but I don t... But even feeling lonely I wish I would have someone to talk about things and I guess your sister feel the same, despite the moments when I really need to be alone, because people around me started to annoy me. Wish u the best and to ur sister xxx
Hi Patricia Ann Simmons, Yes you are so right, thats really good advice. I am so sorry that your brothers no longer call you since you told them you have Lupus. I, myself dont have any brothers or sisters. I have lost friends through having Lupus though. I will never forget when a very good friend of mine alot of years back now had Lymphoma, and i was going to see her as we were always together when we were younger. Anyway i will never forget another good friend saying to me not to go and see her if it upset me. I thought what sort of friend would that make me, and of course it saddened me it was only natural, it didnt mean i didnt want to see my friend anymore. I did know though as soon as i got sick that the friend who had said all the things about my other friendwho did not going to see the friend with Lymphoma, would definately not be of any support to me, and not just her, but another friend as well just disappeared off the scene within a week of me being diagnosed. I think basically they just couldnt handle what was happening to me. I had gone from being really fit and energetic to being in a wheelchair at the time. I used to teach dance, and take part in triathlons. I suppose it must of all been too much for them to handle. I suppose i can just about get it when friends do that, but not family, I understand people have to protect themselves at times, but i would of thought if someone cares about us that much, then they would push aside the illness and still be there for us no matter what. Its not like its the only topic of conversation that we have is it? Anyway when my friend passed away through having the Lymphoma, i was so pleased i was able to have spent the special times with her. I went and stayed with her and her partner for a weekend. And then at christmas i was very privaledged to be asked to go and stay with the family and have dinnner with them. It meant alot to me to be able to that. I know it must be hard for people when they find out someone close to them is so unwell, but at the same time, i understand that it must be hard for them to see us change and go through all sorts, but at the end of the day we are still the same person deep down inside as a person. My family havent been very supportive, as my parents are no longer around, and my grandmother who was my main source of support before now sadly has alzeihmers. My Aunty who is my mothers sister, doesnt think she should have to help in any way, and she has literally said that, even though i have never asked for anything from her. People can be very strange at times, cant they? Anyway sorry i have waffled on abit, i would just like you say Patricia Ann, you are not alone on this one. Take care, bye for now, love and hugs Astrid40xoxo
I think that everyone deals differently and that being depressed is part of this whole thing. I’m glad you are so supportive and help and I’m really sorry for those who do not have supportive people. I do have supportive people around me and I still feel alone and that no one really understands what’s going on with me. To be honest I don’t always know what’s going on with me. I have joined this group and one one Facebook called benlysta buddies and it has really helped to talk to people who really not only know how u feel but have really great relevant advice, nothing is worse then people telling you to get some sun or work out and you’ll feel better.i think at some point I’ll figure out how to deal.
Hi Caryn, Yes you are so right, depression is part of having Lupus sadly. And everyone does manage it differently. We all have different ways of coping. It is hard not having supportive people around when you need them. Thats why i am so pleased i found LWL as there are so many lovely people who do understand and who are supportive when you need them to be. Its true, it doesnt matter how many people you have around you who are trying to support you, it doesnt mean you cant still feel alone. I always think now, how on earth can anyone possibly understand what this is like? As they cant really, as they cant feel what the pain is like, or how it affects us. I also think though if someone is trying at least to be there for you, then at least they are trying.. There have been times when i have felt totally alone, and that i dont fit in anywhere, as everyone is busy doing whatever, and i cant even plan to go anywhere. We cant say yes to anything for definate as we never know exactly how we will be feeling on whatever day it is we are being asked to go wherever. I have been asked to go to so many different places lately, and sadly had to cancel which is very upsetting, and i know the people who i have had to cancel on wont really understand. At the end of the day though we know who we are and what we need and whats best for us, so what right do these people have to tell us what their opionion of whats best for us, when they dont even have a clue about what the illness is or how it affects us. I get alot of what you were saying about eg, get some sun, get some fresh air etc, or if you only did a little bit, say a couple of hours, then you would feel better. I find i can never get across the exhaustion that comes with Lupus. Now if someone asks me how i am feeling, i dont say anything much i just say either so-so or fine as its alot easier, and that way they dont get the chance to tell me whats best for me. It cuts that conversation almost dead really. There are alot of ignorant people out there sadly, and as we will never change that, we have to cope with it in a way thats best for us. The other thing that annoys me is if they see us out and about, and with the malar rash, alot of people assume that means we are really healthy that day. Like i said though, i have given up explaining its the Lupus rash, and that usually means i am having a huge flare. As its almost like these people have selective deafness. I now try and treat myself with kindness and find things that i enjoy, whether its something really simple like laying down watching a favourite televison program, or reading a book, or on a better day going in the garden if its cool and watching the birds fly about, thats enough for me for now. And as i have said i have met so many lovely friends on LWL, who understand what its like to be me. Anyway i wont go on anymore, take care, bye for now, love and hugs Astrid40xoxo
Thanks astrid40 my sister just turn 30 she was diagnosis at age 23 after giving birth to my nephew. I go with her to all of her doctors appointments. I even moved from Georgia back to Virginia to be at her ever called. My sister and I are best friends. We use to talk about ever and any thing. Now she shutting down because the doctors said that there no more that they can do for her. I know she’s scared but im more afraid of losing her she’s my heart.
astrid40 said:
Hi there Lovingkita, Yes i agree she is so lucky to have a sister like you. Its hard for you both isnt it? I dont think there is alot you can do except be there for her, and let her talk when she needs to. I expect she is feeling all sorts of things. The trouble with having Lupus, no one day is the same, so when someone has Lupus, they just cant plan anything, which is so frustrating. I expect your sister feels down from time to time due to her situation, its what is known as Reactive Depressions, basically when you are reacting to something, not to be mistaken for a chemical imbalance type of depression. Thats another reason why its so wonderful she has you there for her. Alot of people who have Lupus just feel so alone, as they feel that no-one really understands what they are going through. Have you ever been to a Rheumatologists appointment with her, if she would let you, it might give you abit more insight as to whats going on with her condition and what she might need some support with. We all tend to not talk to family as we worry about worrying them. But, if you tell her that you are there for her no matter how tough things get, then she might open up, and also this might be a huge relief to her as well. Ask her what she needs from you, as like i said no two days are the same with Lupus, plus no two people are the same, they might have very similar symptoms, but everyone is different in the way that things affect them. How old is your sister? if you dont mind me asking? And how long has she been diagnosed with the Lupus? There are all sorts of factors to consider when someone has Lupus. I know when i was first diagnosed and realised that i could no longer do the things i used to be able to do, i did feel very low at times. As i said though we are all different. Anyway i hope this has helped a little, if you would like to talk more, feel free to send me a post or a message, and if you would like me or any of the others to answer anything else that might be worrying you, please feel free to come and have a chat, thinking of you. Take care, bye for now, love and hugs Astrid40xoxo
Thanks you so much.
anita said:
Hi Lovingkita!!! First of all I would like to say that your sister is very lucky to have a sister like you, which cares and want to help her :). I have lupus…and the same that is happening to your sister is happening to me…I wish I would know the answer for your question, but I don t… But even feeling lonely I wish I would have someone to talk about things and I guess your sister feel the same, despite the moments when I really need to be alone, because people around me started to annoy me. Wish u the best and to ur sister xxx
Wow your son is a blessing:) I tell her I love her just about every hour lol and at night we pray
Patricia Ann Simmons said:
Just let her know that you love her and you are there for her. That is what my sons do. And believe me… It helps a lot.
Hi Patricia Ann Simmons, Thats terrible that you have lost some friends as well. I am so shocked that one friend said not to go near him. He has definately got a problem then. Its this ignorance thing again. You are better off without friends like that. It hurts though. There is this book i found once which made me laugh, its written by a comedienne, its called "How Can You Not Laugh At A Time Like This!" by Carla Ulbrich, she is also the blonde actress who plays in Ugly Betty as her close friend i think. Anyway this book goes on about illness of course, then she lists the ten most stupidet and ignorant things that people might say to us when we are ill, and what your friend said is basically the sort of thing she has listed. If you ever see a copy pick it up and have a laugh, you will read it and just be thinking, oh yes i know that one. Anyway, yes you are right, you have your sons and you have other friends, and now you are going to be making even more good friends who will understand you and how you feel at times. Anyway take care, bye for now, love and hugs Astrid40xoxo
Patricia Ann Simmons said:
I have also lost some friends when I told them I had lupus. One told me not to go near him. I told him that one can not catch it. That is alright though. Like I said I have my sons and my real friends.
Hi Lovingkita, Thankyou for your reply. Aww, bless your sister, she must be so scared as well. It is hard when the doctors basically say, well i have done everything i can now. But at the same time, this doesnt mean the end. I have had loads of scares where i nearly died, sorry perhaps this isnt helping, but what i am trying to say is, with the way medical science is, and what they can do now if something does crop up, i am sure she will be with you alot longer than she thinks she is going to be. I think when we dont feel well it always feels very bleak., and to whoever it feels as though "thats it now, i am not going to be here much longer!". It does seem very real, and of course really really frightening. I had pneumonia before christmas, pneumonia after christmas, with the added delight or rather not, of picking up a superbug from the hospital called MRSA, which can be deadly, I was given three weeks of antibiotics at first, i felt wretched. I could hardly do a thing, Anyway i had another three weeks of antibiotics, the MRSA was on my lungs so it was quite frightening, i am still here to tell the tale though. And before that last Summer i lost 7 pints of blood through having acute anaemia, which is also a Lupus thing for me. Anyway i was rushed into hospital and got some transfusions, and i know i have been lucky and blessed that i am still here. I am in no way belittling how she feels or in any way saying that she isnt that unwell, because i know that she is. But at the same time, they wont just leave her as such. The doctors will try and keep your sister on a maintenance dosage of drugs to try and keep the Lupus at a place where it can be managed, even if its not at its best levels at the moment., And i am sure also that your sister will be having to have regular blood checks as everyone has these to check inflammation levels, bloood levels, and all sorts of other things, so she will be being kept an eye on. Sometimes when things arent working out with Lupus patients, in that the patient doesnt appear to be getting any better, and there is nothing new they can try, the doctor can sometimes say, there is not much else i can do for you now i am afraid. And this can sound a lot worse than it actually is, and very scary too of course. Please feel reassured that the doctors wont just leave her to get on with it. They will be keeping an eye on her bloods which give indication of how active the disease is etc, and how she is progressing. There is something else you could ask for when you go to the Rhuematologist with her again, the Rheumatologist can give you a graph of say her progress for last year to this year or even before then up to now, and this can sometimes put things into perspective abit not just for you, but for her too. It is really hard coping with Lupus, and i am not surprised she is feeling like she is really. You are doing a wonderful job of being there for her. I wish i had a sister like you, hehe. Honestly, you are doing everything and more that you can for her, and i am sure she appreciates it. Lupus can actually cause us to be depressed as well, as it does attack the brain in some ways. Do you think your sister is just down because of whats happening with the Lupus, or do you think she is really depressed as there is abit of a difference. Depression is when someone doesnt want to face anything and is ignoring anything thats of importance, Being down is just like being really upset and low for a period of time due to a situation say. I wouldnt push her too hard at the moment, just do what you are doing, and see what she comes forward with, then if you need to be more proactive about things. Ask her when her next blood test is due? As they should be at least once a month if not more depending on what meds she is on. Anyway i hope i have been of some help, if you would like to ask me anything else, please feel free to do so. I am here for you whenever you need me, thinking of you, take care, love and hugs Astrid40xoxo
Lovingkita said:
Thanks astrid40 my sister just turn 30 she was diagnosis at age 23 after giving birth to my nephew. I go with her to all of her doctors appointments. I even moved from Georgia back to Virginia to be at her ever called. My sister and I are best friends. We use to talk about ever and any thing. Now she shutting down because the doctors said that there no more that they can do for her. I know she's scared but im more afraid of losing her she's my heart.
astrid40 said:Hi there Lovingkita, Yes i agree she is so lucky to have a sister like you. Its hard for you both isnt it? I dont think there is alot you can do except be there for her, and let her talk when she needs to. I expect she is feeling all sorts of things. The trouble with having Lupus, no one day is the same, so when someone has Lupus, they just cant plan anything, which is so frustrating. I expect your sister feels down from time to time due to her situation, its what is known as Reactive Depressions, basically when you are reacting to something, not to be mistaken for a chemical imbalance type of depression. Thats another reason why its so wonderful she has you there for her. Alot of people who have Lupus just feel so alone, as they feel that no-one really understands what they are going through. Have you ever been to a Rheumatologists appointment with her, if she would let you, it might give you abit more insight as to whats going on with her condition and what she might need some support with. We all tend to not talk to family as we worry about worrying them. But, if you tell her that you are there for her no matter how tough things get, then she might open up, and also this might be a huge relief to her as well. Ask her what she needs from you, as like i said no two days are the same with Lupus, plus no two people are the same, they might have very similar symptoms, but everyone is different in the way that things affect them. How old is your sister? if you dont mind me asking? And how long has she been diagnosed with the Lupus? There are all sorts of factors to consider when someone has Lupus. I know when i was first diagnosed and realised that i could no longer do the things i used to be able to do, i did feel very low at times. As i said though we are all different. Anyway i hope this has helped a little, if you would like to talk more, feel free to send me a post or a message, and if you would like me or any of the others to answer anything else that might be worrying you, please feel free to come and have a chat, thinking of you. Take care, bye for now, love and hugs Astrid40xoxo
hey, it is so hard to see one you love getting depressed. sometimes just being there helps even whebn you dont know what to say. But I know for certain that this--what you are doing right now by reaching out to us for her---is probably the very best medicibne she will ever get---that is love, to say, "I don't know what to do, but it hurts to see you hurt, and I love you so much and I will be here no matter what." ---that is what your actions are saying far better than the words...you love and your love lead you to seek help...that is powerful medicine.
Gos bless you,...keep on keepin' on--we are here for your sister and for you. 
Not much you to do but be there, it’s an endless cycle we luppies go through. I know thuder storms are always follow by a rainbow,asia64
I am very sorry to hear that. You are a wonderful sister for trying to get her some help. The depression is a real tough one. Its so hard not to get down when u are in pain and on all those meds. plus all the selfimage issues that come with it. One thing that has helped me to get out of that "screw this, I am going to die" feeling is a good Dr. that u like. Its hard to find, and I got VERY lucky to find one as quick as I have. Try to get her to do more things with you. Dont always ask her "are u ok?" that just reminds her of her being sick and you worring... I know its all meant in good thought, but its real irritating.
Okay thanks for the advise.
sunshinespraypaint said:
I am very sorry to hear that. You are a wonderful sister for trying to get her some help. The depression is a real tough one. Its so hard not to get down when u are in pain and on all those meds. plus all the selfimage issues that come with it. One thing that has helped me to get out of that “screw this, I am going to die” feeling is a good Dr. that u like. Its hard to find, and I got VERY lucky to find one as quick as I have. Try to get her to do more things with you. Dont always ask her “are u ok?” that just reminds her of her being sick and you worring… I know its all meant in good thought, but its real irritating.
So true asia64, we have to take the ups with the downs and the rough with the smooth in this life with Lupus, love and hugs Astrid400xoxo
aisa64 said:
Not much you to do but be there, it's an endless cycle we luppies go through. I know thuder storms are always follow by a rainbow,asia64
Hi Janice, aww what a beautiful picture, yet again you have put up another wonderful picture to help cheer someone, love and hugs Astrid40xoxo
janice said:
hey, it is so hard to see one you love getting depressed. sometimes just being there helps even whebn you dont know what to say. But I know for certain that this--what you are doing right now by reaching out to us for her---is probably the very best medicibne she will ever get---that is love, to say, "I don't know what to do, but it hurts to see you hurt, and I love you so much and I will be here no matter what." ---that is what your actions are saying far better than the words...you love and your love lead you to seek help...that is powerful medicine.
Gos bless you,...keep on keepin' on--we are here for your sister and for you.
Well, as a sister and patient of lupus - my sister now realize that am with her as much as possible and that my sickness is mine, which she just go with the flow of things (health wise ) . Yes it was hard for her to do this from the beginning , (Feb.7, 2011) , cause neither one of us know about LUPUS and the effects of it . So we got together and started finding out information about it and boy !!!! it really helped the both of us - that we have as much time to do all the things we want to as long as I make the right choices about my sickness and do what i suppose to about it . So to sum this up, "Just be there for her as much as POSSIBLE - even when the moments get HARD for the BOTH of YOU " .... take care and best wishes for you and yours .... Beverly L.
Hi Patricia,
Sorry you had that experience, but, I don't understand what is the negative stereotype associated with Lupus. This disorder is genetic, so why would people treat you like they can get it? Truthfully, if they are related by blood then they can develop Lupus, if it is already in their DNA genetic code.
Patricia Ann Simmons said:
I have also lost some friends when I told them I had lupus. One told me not to go near him. I told him that one can not catch it. That is alright though. Like I said I have my sons and my real friends.