What is Lupus
Systemic lupus erythematosus (SLE or lupus) is a chronic, potentially debilitating or fatal autoimmune disease in which the immune system attacks the body's cells and tissue, resul...
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non-supportive family
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i live alone with my non-supportive husband and have 3 grown children. 2 daughters who live far away and my son (who is in the area) just got married. i had family come in from all over for the wedding, some by plains some drove for days to get here.
my son and my new daughter are the only ones who 'get it' the rest think all that is going on with me (got a list) is all in my head. i had to 'live' with these people for a week and a half and wasn't about to call the only ones who do know that my illnesses and injuries are real. my son and new daughter were busy planning their wedding. i couldn't even get online to my DS family to get the support i needed during this time so i am at a very low point right now and need you all in the worst kind of way! it is hard enough being sick and having other injuries that cause major pain but to have the disbelief and disrespect of family is like adding salt to open wounds! it hurts beyond belief. Please my fellow suffers of this dreaded disease, i need some moral support and comfort for the horrendous week and a half i have had at their hands. fortunately they are all gone and my husband is quiet with his disbelief so it isn't as bad. I NEED YOU ALL PLEASE!!!! Posted on 06/30/09, 06:06 pm |
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grammydeb, I am so sorry to hear you had to deal with this with a non supportive family. I know exactly how you feel, my family is so fake, when I see them they ask how I am but that's about all they want to hear. I just choose to ignor them and stay away.
I know that being with this group has taken most of my loneliness away. It is always nice to come on here and know that you will be loved and supported. I am here for you and sending you tons on hugs your way. I hope your days begin to be less stressful. hugs, paige 
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Grammydeb I too am sorry you had to go through this. It is so hard when family don't get. I know from my own personal experiances. I am so glad your son and new daughter are supportive of you. We are here for you. I hope you can relax now that they have left. Sending big gentle hugs. marilyn
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Grammydeb ... My heart goes out to you because I can relate to how you feel. Although I only recently was diagnosed with SLE, I have several family members who have reacted in the same way as yours. On Father's Day, my dad's wife asked me how I was (my sister had already told them because I wasn't even going to), and when I started talking to her, I could tell she wasn't even listening. I just walked off but I don't think she noticed.
We cannot choose our family, but thank goodness we can choose are friends. I choose people who help lift me up and want my highest good. Hope you feel better soon. I'm thinking of you!
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Grammy Deb,
What a wonderful strength & spirit you have deep inside yourself to get through all of that! And guess what???? You are still sane! Woohoo for you dear lupie sister of ours!!!!! The negative way that others deal with us & our disease never stops amazing me. And I am beginning to beleive it never will. Even after I lost my sister to her lupus complications. Friends that came to her funeral, have "blackballed" me ever since my dx. Of course it hurts, we wouldn't be human if it didn't. And at times, when I am not looking, it all saddens me as well. But then..... I look up at the sky, I look at my little niece Mea who just turned 3 and lives with me at this time, I look at my mother who is now 77 & we live together as well. And I thank my Lord above for all that I can see that I am blessed. My strongest, deepest hugs, snuggles & prayers to you sweets!!!!! Rachelle
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I am definitely not making excuses for any of the behavior that some of you expressed about your families. It's really unforgiveable. But some of it may be that they just don't know how to deal with the illness. I've been sick for so long and sometimes so seriously that I think my family feels helpless which makes them detach themselves in a way.
I know my son who was 2 when I got sick, shows no emotion about my illness, even when I've been very ill in the hospital. My husband also shows very little emotion "forgets" very often that maybe I'm not feeling so great even though I did dialysis that very day! My siblings don't know what to do and neither do my friends. They try but they definitely don't get it. I don't think there's anything we can do to help the "healthy" people help us. That's why it's so nice to have this group who actually understand how it feels to have a really bad lupus day! Thank goodness we have each other. And Grammydeb - thank goodness for your wonderful son and daughter-in-law. They'll be a wonderful support for you after the honeymoon! Goog luck and try not to let your husband make you crazy! Dale
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Grammydeb,
I know you went through so much that week and know that it was a relief when it was all over. You have helped me through so much even when you were down. I just hope I can be there for you when you need me. I understand what its like as I am sure many others here do, when family doesnt understand or respect the illness or diseases we go through and/or even our homes or just us as people, but I have gotten to know you through the last several months, and I think you are such a great and wonderful person, the mother I wish I had growing up, and proud that you allow me to call you mom. You are so selfless...I am glad you have such a great new daughter in your family and a wonderful son who looks after you. You deserve the world. Just know We are all here for you and we all love you so much, and you can vent cry scream yell any time you need to...you are always here to give us so much I am glad we can finally be there for you. Your friend and daughter, Sherry
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Family events drain me big time. I get really sick for some reason. I can stand one family member at a time. But everyone together, in laws, aunt uncle etc. is to overwhelming. I don't know why, maybe it's because I can tell me getting sick hurts them, which in turn makes me feel bad. But one on one I can explain how I feel yet kinda set their minds at ease. Its the anxiety, and emotional stress that exacerbates it all. I got really sick the last time my brother came into town just because we ran around town. My body got to fatigued and I couldn't keep up.
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Well, you made it through a very tough week without telling anyone where to get off, this makes you a "hero" as far as I am concerned. I tend to be a bit of a loner, and am somewhat "detached" as far as family goes, so if they don't give a "rats" it doesn't really bother me. You are obviously a kind and sensitive soul, so over the next weeks, rebuild your "peace" by finding small moments each day to cheer you. It can be the smallest of things....just savour those small joys, even go for a gentle walk to get those endorphins flowing...You will find happiness, you just have to start looking.....love, light and peace from the land of Aus.
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These people don't see you day to day they can walk away with their opinion. Lean on the people who understand you and this illness. Stuff the rest. What comes around goes around!
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Oh, I know it well. I don't know where these people come from? Just because you look well, nothing must be wrong. My brother says it's mind over matter! Hmph! What does your husband say about it? Has he gone to the doctor's with you? I'm not married so I can't say I know how that feels, but I have other family members that have taken a similar stance. I'm sorry to say but if I was made to feel that uncomfortable, they would have been staying in a hotel or motel somewhere. You shouldn't have to put up with that and then put them up at the same time!
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