Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

912 Members

7,373 Posts

0 Online

beautiijunkii 12/10/2009

Hi All,

It's been a while since I've been on the forum. I am in a bad living situation that requires immediate rectification. I live with my brother, sister in law and 2 nephews, and my mom lives there too. It's a spacious arrangement but not comfortable. Reason being is that my brother and sister in law know nothing about lupus. Nothing. My brother has told me that he doesn't want to know anything about it either. He seems to think that there is nothing really wrong with me, I just don't do anything, I'm lazy, blah, blah, blah... My sister in law seems to think that all lupus patients are created equally so therefore since she has a friend that has lupus and that same friend has 7 kids, I should be able to do everything no problem. I don't know about you all, but I have a lot of cognitive dysfunction (brain fog) with my disease; I'm quite forgetful to say the least. My mind just wonders and I'm always tired. I'm sure you all can relate to some degree, I'm also sure you can relate to the chronic fatigue that I feel day in day out. My brother doesn't think I have these issues because I seem fine to him. Sometimes he comes to me needing help wording things in an email so if I can do that better than he can, then I must be fine. Because my brother is not interested in looking into the disease at all, he knows nothing about it, but he feels that I am capable of doing more than what I'm doing. He has an answer for everything. He thinks that because I'm not discussing my plans to move out with him, that I must not be thinking about moving out so now he's ushering me to the door.

I'm sorry if I'm rambling, I honestly don't know where to start. There's so much I want to say but I get confused when I start writing and I jump all over the place. Please, everyone, I need your help, encouragement, prayers.

Allisonc79 12/10/2009

You need to sit down with your brother and tell him how debilitating Lupus can be. Hand him some literature on it or perhaps take him to the doctor with you. Does your mother offer you any kind of support? Maybe she can talk to your brother for you. Maybe give him and his wife something about the spoon theory. I would also let your sister in law know that lupus symptoms vary from person to person. It is the disease of many faces. If they keep on persisting like that even while you have offered that information, just keep your boundaries with them. Tell them you don't want to hear anything from them about your illness or the way you live your life and that you won't stand for any criticism anymore.

dadsgirl1 12/10/2009

It is hard when your family doesn't understand. My family understands that I have illnesses, but they aren't the ones living through it so they can't understand what "brain fog" is. I'm sorry your brother is giving you such a hard time. He probably has his own problems and things he is dealing with. Maybe you would get along better with your family if you did move out if you are able to do that. Best of luck whatever you decide.

I would like to say something though... My father and my brother died recently, along with other close relatives, and I'd give anything to have a few more days with my brother. I hope things improve with your family.

Best of luck.

Mel1967 12/10/2009

Family support is sometimes hard to get, it seems many men just don't care to educate themselves about our illness. Sad but true. You didn't mention how your Mother handles your illness/situation. Is she at all supportive of you? Perhaps she could try to discuss the situation with your brother if she hasn't already.

I agree with Allison, try to give your family a copy of the "spoon theory". I have a couple of brothers and family members that are not interested in educating themselves about lupus, I'm sure living with someone you love who does not understand must be even tougher.

You are in my thoughts and prayers.
Mel

deleted_user 12/10/2009

iff i was you i would print some info off the Lupus boards and leave it hanging around..it worked with my FM....try it..huggs to you....

mar1976 12/10/2009

So sorry you are going through all of this. I guess it is hard to understand how sick we are because you can't see it. It's not like we have a huge sign on our forehead that says I AM SICK!!! We all understand here, so vent all you want. I wish you the best of luck with your situation, it must be really hard to live with people who don't understand or care to. My thoughts and prayers will be with you. I hope your brother shows more interest in your disease. Best wishes. HUGS!!

beautiijunkii 12/10/2009

Thank you for your supportive words everyone. My brother is of a rare breed. He is as non-compassionate/empathetic as anyone you'll ever meet. He is very stubborn and one-track minded so when he decides something, he sticks with it no matter what. I just need to get my own place so I can be out of that stressful environment and free to be sick in peace. When I'm not feeling well, he just looks at me like I have a third eye. You know, "you don't look sick". That bullshit.

deleted_user 12/10/2009

It is so hard dealing with people who are suppose to be your crutch when your having a difficult time. ESPECIALLY FAMILY. That hurts more then anything. Though i dont live with my family, they dont get it either. Dont care to. I have sent them info on lupus and they ask, "why did you send that to me?" Um...because I want you to know why I cant do the things you make me feel guilty about not doing....Some people sadly just dont care what others are going thru as hard as you try to get it across to them. I feel your pain...Its so hard when we look ok on the outside but are broken on the inside....I can totally relate to the cognitive issue you have. I have that too. My husband gets irritated and mad at me when I tell him I dont understand what he is explaining to me. He says its because Im not paying attention to him and that I I need to listen better. NO...I am listening, I just dont understand most of the time.

You should not need to explain your issues to your family of all people. Maybe you could have your brother and family read some literature about lupus or even go with you to the dr.s. Do they see the medication you take? Your not lazy and you are the only one who can take care of yourself to the best of your ability. Maybe your mom could speak with him? I wish I could give you better advice. Your not in a position to move if you dont feel well. Im so saddened that so many people lack compassion these days. Your brother/family prob. wouldnt last one week in your shoes and you have to live a lifetime in them. Your not rambling, beauti. Please let us know if we can help you in any way. You will be in my thoughts and prayers and I pray that you will not have the roof taken off from over your head.
hugs

beautiijunkii 12/12/2009

Oh, thank you everyone, for your encouraging words and advice. I believe in God and I know he will make a way. He has brought me through so much over the past year and a 1/2 so I know he won't leave me. I feel like we are given these crosses because we are the only ones that could bear them. Someone has to, right? After each trial and challenge in my life, whenever I look back, I'm always much better for having going through it. Peace and blessings to everyone.

mar1976 12/12/2009

beauti,

How beautifully written. I love how positive and encouraging it is. Best wishes!

deleted_user 12/13/2009

I second what Mar said. You write beautifully. I also believe we were given certain problems/issues to learn something from them. I guess life lessons for people who choose to see it this way. This is the way I am able to cope. To learn something about a situation or myself from my experiences. You are a very strong women and do not let others beat you down. You will always have us as a crutch.
Please keep us updated on how things are going and know we are always here for you. Venting, being sad, whatever your heart desires.
xoxo

Join the Conversation