[Karly1964]

:shrug: Before I was diagnosed I had a few friends, some of them better than others, you might say some friends and aquaintances, like many people. That I was pretty used to, but since my symptoms now have a name, and meds with side effects to go along with them:worried: people seem to drop right out of my life:sadbye: usually with no explaination. Maybe they just can't take the stress of being around me. See in the past I had severe difficulties with psychological issues:sad: but now through therapy and my vagus nerve implant things have gotten better, but there were about 16 years where the difficulties were all emotional and quite hard to deal with, that lost me most of my friends. I got used to that and started forming new friendships and made some good ones along with those who have hung in there through all the emotional problems those are my forever friends and I feel lucky to have them. But this recent flare up and my returning the dog :dog: has lost me some friends that I thought would never leave, they'd been there throughout all my emotional problems and thought they would be around for good. But now they seem to have distanced themselves from me and have nothing to say to me when I call them.:wow: There's even one person who told me that she knows several people with lupus and some are better some are worse, but her view on the whole lupus situation is that I am making a big deal out of it when it is not a big deal. That I suppose would not make her a good friend in it's own right. It's just that I have not been used to having a whole lot of friends in the first place and then when they started being a part of my life I got used to them and it hurts when they leave.:tears: I would be totally lost without my computer and this message board, no one else seems to understand, my sister fortunately is a registered nurse and knows some of what I go through and is very supportive and sympathetic:wink2: I tried to explain to the one person who feels that lupus is no big deal, what my symptoms are and how they affect me but she just doesn't see it, she doesn't want to hear about it, she thinks I am being overly dramatic (she knew me when I had the psych. issues) and that I am trying to manipulate her. far from it I would just like someone in real life to understand, many people who know me casually do understand, but it is those who know me the best who are having issues, that I just don't understand.:shutup: I would think that they would be the most supportive, unless they just don't want to understand because they are scared, or don't want to be bothered with it. Sorry this has been so long and sort of rambling, but I just had to get some of it out or be smothered by the confusion of feelings and lack of people around me. Thanks, for listening, Karly:love2:**Just got an email from the person that thinks lupus is no big deal, all about eating Chinese herbs and vitamins that will supposidly "cure" lupus........

 

[neongirl]

Love those cure-all e-mails......NOT. I have been the recipient of a few of those myself . I'm not sure if it is a Lupus thing or not. Previously, before I was dxd with SLE, I had been mis-diagnosed with Crohns disease. People were really supportive, even though I didn't really need or ask for support. Once I was DXD with SLE though, everything changed.........No one ever asks how I am,how things are going etc.. My mom and brother act like nothing is wrong, my mom said "the less I know, the less I'm responsible for". My brother said something to the effect that "Well Seal (the singer)had it and he is just fine, so you'll have to take a couple of pills, not a big thing......at least it isn't something serious like gall bladder problems." My husband refuses to discuss it, does not go to appts. tests etc.. But when he has a problem...:hehe: . I don't tell my kids very much because they are still young and I don't want to upset/scare them. My church basically disowned me after I missed a month due to chicken pox and secondary illnesses due to the pox, not to mention caring for three children in various stages of outbreak . So Karly, My thought is that it is a Lupus thing, although I have heard of people with cancer having the same falling away of friends and loved ones. Maybe it is this way with any really serious disease?? I have thought a lot about why this happens, and, I think it may be that most people are a lot more selfish/self absorbed than we think they are. It just doesn't become evident until we can't do as much for them and need them for support. At any rate, you are not in the boat alone

 

[Karly1964]

Thank you for your support, my mom says the less she knows the better, and my dad uses the same thing only so that he doesn't have to feel bad about it, I never understood that, shoot I have been there for them when they needed me, but they sure do scatter when it is an illness that will probably be arouond for a long time and have lots of ups and downs.:worried: I am sorry that your husband isn't supportive, I wish he was considering he lives in the same house as you do and sees how you feel, and the church that is inexcusable. I am so glad you come here and can know as I do that we are not alone, and are dealing with many different things. I do have a few people who call and see how I am and for that I consider myself lucky, there just seems to be a big part of me that wishes my family would be more supportive, meaning parents, my sister is very good about understanding. But she doesn't scare easily I guess some people cannot put aside their own fear, disbelief or selfishness to be a support for someone, sad for them because they missed out on wonderful people like all of us! Take good care of yourself, Karly:hug: :love2: