My sister was recently diagnosed with lupus

General
1

Hi everyone! First of all thank you Ben for creating this site. It’s very nice to have somewhere to go to discuss this.
My sister was recently diagnosed with lupus and is struggling with getting a grip on what this means for her. I was hoping to get some in-site from people who may understand what she is going through. I want to understand and be there for her in every way I can.
What would you like from a family member?
My sister and I are very close. We lost our parents at a young age and then lost our only big brother to Addison’s disease when he was only 28. This has been a hard hit and I think I might just need to hear, she’s going to be ok!
I greatly appreciate any in-site that anyone can give. I pray for everyone with this painful disease. Thank you so much for your time.

Sincerely,

“Big-sis”

2

It’s awesome that you are taking an active roll into understand this complex disease on behalf of your sister. Having a support system is the most important with a Lupus diagnosis. Welcome!

3

Wow!! Your sister is so lucky to have you. I have SLE - systemic lupus erythematosus- my family is very kind and concerned but I dont think any of them have tried to learn about the challanges I face day to day. Your sisters lupus is a very personal disease. Lupus varies greatly from person to person. Try to find a brief article called "The Spoon Theory" it will help you to understand her daily fatigue. Talk to your sister about her pain levels. Try to be patient regarding her ability to plan things. Her pain and fatigue may vary from day to day. You may plan to go shopping and she cancels at the last minute, or needs to go home after an hour. Most of all just love her and encourage her to ask you for what she needs. Do not expect her to "feel better" I must say that is a frustrating thing for me, people asking if I feel better, like the lupus is going to go away. Also people offering medical advice. Believe me, I have tried sooo many meds looking for the ones that will provide quality of life. I know they mean well, but I would like to talk about something other than my lupus :) Prayers are going up for your sister, blessings will come down...... take care of eachother!

4

I hope you read the basics about lupus. Generally speaking, it is chronic disease so we are expected to live about a normal life. We just are going to have some bumps along the way. So, just read only recent like in the last 10 years worth of articles on lupus and you should get a very clear, honest picture about it.

Right now, she is going through, what i call the grieving stage. As you know, due to your life's experiences, you must grieve to keep moving on when bad things happen. This is going to be large upset and worry for her until she can understand how the lupus is going to affect her life.

That is 2nd emotions she will be having along with grieving. Worrying about every thing that now occurs is it the 'lupus' or not. You can really help her in this area as much as with the grieving by helping her to try and realize exactly what is the lupus and what is just getting sick same as normal person would. There is always the 3rd option, that something else is going on as well. So it gets very confusing for us and takes on average a good year or two to figure this out.

Mainly, if she is feeling very tired where she starting to feel sick, she needs to start resting. If she can learn to try and listen to her body and rest this will help her greatly. But most of us, will push it just because it can feel like we need to rest for months. Or once a flare pops up which is what we call when we get sick...if you keep pushing it too hard, it will just keep lasting all that much longer. So resting is very important...even more so than getting scared and running to doctor every time you flare.

She should ask her doctor about what warning signs she should look for...and it help if you know them as well. This way if she is not well, you can help her determine if it time to go see a doctor or not. Her doctor should be able to help her know when it is time to worry and see them and when give it time and rest. A good part of this is just her getting to know her limits as well.

But here is the very good news, they are making big strides in lupus and all autoimmune diseases. I have read repeatedly that they expect to either have cure or much better life for us for those as young adults now. So she should have good life and hopefully find a cure in her lifetime!

I will add, that i totally can understand how close and worried you both must be. I was very close to my older brother. He was 22 months older than I and always had been sick all his life. This was in 60's on, he was born in 1952. They never knew what was wrong with him and he was put through a lot of horrible tests and tortures as child and young adult. I was sick, i realize now more than my friends but i did not think of myself as sick compared to my brother. I found out i had lupus in my twenties so was early 80's. He died when he was 34. They now are using drugs commonly that i tried to get his doctors to try on him, but they were in experimental stages and i think my brother just was in too much pain and tired from it all. He found love and had children. Something he thought he never would have before he died. He really pushed himself to make sure they had nice life though his daughters were only 3 and 5 when he passed. I am positive that he died partially from pushing his body so hard. I am now closer to his level of illness and i really wonder how he managed to work full time feeling so poorly. So you might hear of some people passing from lupus, these are rare cases, most of us do live long lives...maybe hurt and feel tired but should be fairly happy lives.

OH...one thing i have noticed is your self out look on it. If you feel you are going to continue to have happy life, yes you are going to have off days and not feel well but those people tend to do better. They handle pain much better in all studies and even the fatigue. So make sure she does things she enjoys!! I even noticed i can be in great pain but if it something i love, pain is worth it...where if at work...i get exhausted from it. Hope that makes sense.

But i wish you both the best...you both have been through enough.

5

Hi

Thank you for researching Lupus and trying to help your sister, and yourself. When I was first diagnosed(1 1/2 years).one of the first things the Rheumy told me was that I probably would not die from Lupus,(I'm 72). I had a pity party for about 2 days and then decided that wouldn't help me so I try to remain positive, What helped me a lot was this site, and all the support you get from people that know what you are going through. Every one of us is different and what med works for one does not work for another.

Stay positive.

Cindy

6

Your sister is a very lucky person to have you.

You have to hold on.

7

Wow! She is so lucky to have a brother like you!! My brother hasn’t talked with me very much since I’ve been diagnosed and has started treating me poorly. I don’t know if it’s him not understanding lupus or just not wanting to admit his little sister is sick. The thing I want most from people is understanding what I’m going through and that is not all in my head. Being on here has helped me so much to know more about this disease that has changed my life forever. I’m also able to come on here and vent to people who truly understand what I’m going through. I have learned it is OK to cry and have our moments, but then I have to pick myself back up and do the best I can. As some one told me, we have to grieve our old selves and accept or new self. I have only been diagnosed for 9 months and am still in the process of trying to get my med under control. Lupus has changed my life and the way I do things, but I’m doing the best to not let it stop me from living life to the best I can. Hope all goes well for you and your sister as you go through this journey together! I know how hard it is for the people around us that takes care of us. My mom is my main caregiver and its just as hard for her some days as it is for me. Your sister is so very lucky to have you! Someone who is willing to go the extra mile to know more about what she has to go through. Praying for you both! :slight_smile:

8

The fact that you are concerned and empathetic enough to come here and find out more about how Lupus affects others, is already a HUGE support. My family and I aren't close - my family members don't show their emotions and keep to themselves - just being company for her will help (as well as leaving her alone when she is not feeling well). Be there if your sister wants to talk about it - she may not want to - depends on what kind of person she is. Best advise I can give is to not let her feel as if she's isolated/alone. I am in my 30's and have young children - helping her with the physical things like helping her with errands is a big plus. Pain and exhaustion are probably the biggest "inconveniences", and it's mentally very hard when you want to do things, try to do them, and can't or it leaves you wiped out. If you do things, leave at least a day or two to "recover" - for instance, do something with her on a Friday or Saturday. It would be wonderful to go with her to doctor appts and take notes for her while the doctor talks to her b/c when you get news, a lot goes through your head and you tend to forget things (there is a brain fog too - mood swings). You can learn a lot by reading about it. Be there for her when she loses friends who can't handle it or don't want to be bothered. Be there for each other - sounds like you would feel better with the company too - it's good the two of you have each other - some of us have family members as close - your sister is very lucky:) Best wishes!

9

I agree…being there for her and letting her know she’s not alone would be wonderful. Also, letting her know she’s not a burden, especially on those days she’s less ’ effective ’ and just trying to cope with pain and exhaustion…she is lucky to have you. : )

10

Your sister is very lucky to have you. Just being there and listening is helpful. She will have days where she will half to let it all out and will need to lean on you.

11

6 plus years into sle many meds and trips to hospital,lost all my friends my husband still has problems I have Addison’s to so I had to give up work I do bits at a time I love to garden which is a be no no but I I in joy it and put up with the pain

12

Hi Big Sis,

Its wonderful that you are so supportive of your sister. Have you recommended our community to her? After my diagnosis, joining LWL was the best thing I did for myself. I have tried to get my family to come here and learn a little about Lupus, but they aren't interested. They are supportive, so that's ok too.

My husband recently read something about lupus, and now he is asking me about my symptoms and trying to help me take better care of myself. He doesn't like me working, and is very watchful that I get my rest, and is asking me if I'm taking my meds everyday now. It was kind of funny at first, but at least I know he's trying to learn and he's sensitive to my needs.

13

Wow! big sis, KEEP BEING YOURSELF !!!! am the baby girl of a family of 6 kids (same father but different mothers) and my sister which is the oldest of us , was really Stupid to what she could / would do with me and we are VERY CLOSE , the rest of the siblings are boys (which is something totally different ) . My sister avoid me for months , really , she would not visit , call , or anything , she even picked up overtime hours so that she wouldn't answer my phone calls - which she told me me this afterwards , smile. We did everything together (everything ! I lost my best family member & friend) , but after everyone came to visit and i kelpt calling , she finialy came to visit me ! That was the best day of the life of LUPUS for me , visit to hear her voice , i jumped out the bed (was in great PAIN) , ran -( shuffled) to the den where i jumped on her lap , which she pushed me to the side and said , " No let me sit on your LAP " , i did let her sit on my lap , but she weighs more than me so that didn"t last for long , smile . We hugged for a long time and she told me you better do what you suppose to and that she was right there for me at ANYTIME , just don't leave her ( die) , i didn't know that she knew someone who had Lupus and they died , until that visit from her . So just be yourself and visit her as much as possible , and if your anything like my sister your sister really need you right now , cause i dint know which of my male siblings could replace her !!!! All of them are clowns ( in a funny way - they are Never serious with me and my sister , unless it is about a guy-smile) So stay there for her, this is probably the most worst moment of time for her . Yes ! she will make you want to stop at times but don't , it's not her that is saying or doing crazy things , It's the LUPUS, bare with her . Hope that this helps and hang in there the road just begun ..... Beverly L.

14

Welcome, you’ve come to the right place to address your fear, because we’re all okay, one way or another, living with lupus. And when we’re not, we have each other in this wise and supportive community when we’re lacking it in our real-world lives that don’t really make room to understand. It is WONderful to see you here as such an invested family member; just being that will go such a long way for her. On this site you could dig through countless stories of us feeling abandoned or even outright criticized by family members who would rather blame us for how the illness affects all of our lives (of course the impact on family is huge too!) instead of supporting us to be as well as we can so we can have the best chance to contribute to our families and relationships as much as we all wish we could.

To be perfectly honest, which we all are on this site, lupus can be really, really hard. The Lupus Foundation of America (LFA) has named their awareness campaign “help solve the cruel mystery!” Cruel and mysterious are great words to describe it. In coping with things we never thought we could or would have to face at a much earlier age than we expected to be sick, we learn so much about how to value life, to celebrate it as well as be careful with it! Many of us are at least as happy as we were before the illness (though in retrospect, many of us had symptoms for many years and were inconsiderately told by doctors and family alike that it was all in our heads…) That’s not to say it’s a hard-fought battle to find and hold onto the positive outlook…

Prepare for difficulty, but not utter devastation. Acknowledge that your fear is very appropriate, but also know that you will find great courage confronting this illness! Like I said, she is SO fortunate to have you by her side, one of those powerful weapons many of us are lacking. Wishing you and your sister calm as you learn how lupus will be affecting you over the first few years (it’s impossible to get a “prognosis” aside from watching its behavior and response to treatment… You’ll know a lot more a year from now, and I’m sorry to say the uncertainty and patience just comes with the territory!)

15

That is such a beautiful message !! And well said! Couldn’t have said this no better…Beverly L.



Faladora said:

Welcome, you’ve come to the right place to address your fear, because we’re all okay, one way or another, living with lupus. And when we’re not, we have each other in this wise and supportive community when we’re lacking it in our real-world lives that don’t really make room to understand. It is WONderful to see you here as such an invested family member; just being that will go such a long way for her. On this site you could dig through countless stories of us feeling abandoned or even outright criticized by family members who would rather blame us for how the illness affects all of our lives (of course the impact on family is huge too!) instead of supporting us to be as well as we can so we can have the best chance to contribute to our families and relationships as much as we all wish we could.


To be perfectly honest, which we all are on this site, lupus can be really, really hard. The Lupus Foundation of America (LFA) has named their awareness campaign “help solve the cruel mystery!” Cruel and mysterious are great words to describe it. In coping with things we never thought we could or would have to face at a much earlier age than we expected to be sick, we learn so much about how to value life, to celebrate it as well as be careful with it! Many of us are at least as happy as we were before the illness (though in retrospect, many of us had symptoms for many years and were inconsiderately told by doctors and family alike that it was all in our heads…) That’s not to say it’s a hard-fought battle to find and hold onto the positive outlook…



Prepare for difficulty, but not utter devastation. Acknowledge that your fear is very appropriate, but also know that you will find great courage confronting this illness! Like I said, she is SO fortunate to have you by her side, one of those powerful weapons many of us are lacking. Wishing you and your sister calm as you learn how lupus will be affecting you over the first few years (it’s impossible to get a “prognosis” aside from watching its behavior and response to treatment… You’ll know a lot more a year from now, and I’m sorry to say the uncertainty and patience just comes with the territory!)

16

Hello Big Sis!

You're the best! Love you!

Lil Sis ;)

17

I'm so glad to see this sort of support between siblings! Kudos to both of you. My strongest supporter is my husband. Let me share a few things he does that I find most important to me.

1. He listens. I believe that those with Lupus all need at least one person they can tell their woes to. Sometimes I just need to whine about how bad I feel, and it helps to have him listen WITHOUT offering solutions, advice, or vague empty platitudes. Sometimes I just need to cry. I don't want to have to explain WHY I feel the need to cry, I just need to let out my emotions. He lets me do all this without judgment or jumping to conclusions, understanding that I need to vent.

2. He helps. I have had to relinquish a lot of household responsibilities, but I do have certain ones I do my best to keep doing. Even so, I often need help and he is always there to assist me, regardless of what he is doing at the time. Sometimes I feel guilty about pulling him away from whatever, but he assures me that he is there to help me, no matter what. Having that assurance is such a relief. I can ask him to make son's lunch in the morning when my hands are hurting, and he won't gripe or sigh or ask me if I'm really feeling THAT badly. I can ask him to haul laundry up or down the stairs, and he gladly does it, out of love. I guess it isn't so much that he does these things, but it's his attitude as he does them. It isn't easy giving that much of yourself to someone, but doing so is such a help and a reassurance to someone who can't help being sick.

3. He pays attention. He often is as aware of my condition at any given moment as I am. Granted, that is likely due to nearly eighteen years of marriage. However, this is also due to him listening to what I have to say about my varying pain and other troubles, listening to the doctor's information, and keeping an eye on me on a daily basis. So when I snap at him, then apologize for being so grumpy due to my pain, he is kind and understands and does not hold it against me. Usually by the time I ask him to help me with something, he's already expecting that I'll need his help, because he noticed how I was feeling beforehand. He is quick to offer leaving early from some public gathering when he knows I'm feeling tired or painful. His focus is on me, rather than on what he'd rather be doing or thinking about. It's reassuring to know I'm not the only one having to watch and be careful about my condition. I am not alone.

I'm not sure how applicable these can be between Big and Lil sis, but surely there is some help to be gleaned from it. Talk together about what Lil sis wants/needs from Big sis. Communication ALWAYS is useful. It's wonderful that y'all are starting out on the right foot here. My own brother is also very supportive of me, and does his best to be helpful and understanding whenever he can. Good luck to the both of you!

18

Hi

jUST BE ThERE FOR HER. uNDERSTAND WHEN SHE hAS TO BOW OUT OF A SOCIAL EVENT when she doesn't feel well enough to go.Help he even when she says she can do it. It's hard for some of us to ask for help when we can't do the things we use to do.

Cindy

19

I agree with Cindy. Don’t ask her is she needs anything. Just do it. Little things such as folding laundry would mean a lot.