Today I'm kinda down, I was on facebook which I do occasionally because it has become such a depressing network for me. I saw pictures of my family at a cousins birthday party and they all seemed to have a great time. My family was pretty close growing up and we had cookouts and family outings all the time. My grandma passed five years ago and it caused so much of a break in the family I decided to move to Atlanta. Once I was diagnosed with Lupus my family begged me to return to DC because the "missed" me. Well I've been back for almost three years now and my family seems to be no where to be found. Since the beginning of the year there has been two weddings and numerous parties and no one has thought to let me know about any of it. I talked to my mom and she expressed that she told a few family members that I have bad days and it may not be a good time to invite me to anything. When I expressed my disappointment in that she asked me had I reached out to them at all. Honestly in the beginning I did especially since I lived in an apartment complex where five of my cousins lived and I tried but when I would have a flare or was hospitalized they kind of disappeared. I had Thyroid Cancer and had surgery...no one visited or called, that really hurt but I said I wouldn't take it personally. Anyway, the party this weekend my middle son attended and I knew nothing of it. I'm just feeling really alone right now. I miss my family and wish that they would at least call once in a while to say hi but I understand it may not be something that they want to deal with. My friends are slowly leaving and I just didn't realize that having Lupus would become such an issue with so many people around me. For those of you who know me I try to stay positive and continue to smile but today that smile seems a bit forced. Thank you LWL for being here because I don't know what I would feel if I didn't have this as an avenue to vent or just be recognized as someones friend.
I've seen situations like this before with illness and you'd never see me on facebook, oh i get the invites and throw them into junk....it sounds like you have such a large family and not one will show their head and for your son to go and never mention it, well it makes you think...sorry for saying that but he could have at least got intouch and told you what it was like etc and this i can't understand only you know your own family.
Nu it sounds like if you want your family that bad and miss them, then it's involving grovelling as they say here and all on your side which you could do and then if they turned their backs on you, it would cut you up more...alot of people who live there's lives and their health is ok refuse to have illness around them.
Take me for instance, yes i have ste but i do miss kim my youngest sister who is 5miles down the road, i've tried my hardest with her and she's got Lupus and just does'nt want to know and that's the same for Lupus although there'll be a calling day for her one day, when it hits her more plus she as an hubby who won't stand by how it affects you like ste my hubby does plus besides you and the rest of the family which you are, the only other person is ste.
You've always got we and your such a lovely person and always helpful....it's lovely to have such a lovely lady as a friend.
I understand what you are going through. My family is turned off by the idea that I have lupus. My friends have disappeared and I live thought Facebook to stay connected. I see their lives going on and I am not a part of it anymore either. So yes that smile that is not on your face is understood. It Hurts!
Did you think about posted your feeling on Facebook to all of them? Maybe that will get their attention.
Even though i don't use facebook...you've made an excellent point to Nu which i never thought about posting her feelings on facebook "Good one mate". xxx
Dewing3569 said:
Nu direction
I understand what you are going through. My family is turned off by the idea that I have lupus. My friends have disappeared and I live thought Facebook to stay connected. I see their lives going on and I am not a part of it anymore either. So yes that smile that is not on your face is understood. It Hurts!
Did you think about posted your feeling on Facebook to all of them? Maybe that will get their attention.
Nu, I'm so sorry your family treats you like your invisible. It sounds like your mom inserted her opinion where she shouldn't have. It doesn't sound like they're being malicious.
I like Dewing's suggestion. Post old happy memories and photographs of everyone at different parties on facebook! Just stay positive but let them know how much you miss them and you hope they'll include you in future events. Let them know you aren't shy and will tell them if you don't feel well enough to attend, but would like the opportunity to go if your feeling better that day. Let them know how much you miss them.
Another thought is to ask your son to take you to the next party as 'his date'. He may also be able to give you insight about why you're being excluded.
Or, how about inviting one or two of them to your place for coffee or tea. Again, stay positive and try to laugh during their stay.
I don't understand what it is about Lupus that makes people turn their backs. My husband has a cancer and he seems to get a lot of support, but my disease is pretty much ignored so I do understand. I told my husband, 'I've got to find new friends!' lol Since we have only a 20% chance of dying from a Lupus related illness, they think it's 'all good'. They have no idea how much pain and trauma we go through each day.
On the other hand, my daughters invite me to things I find seemingly impossible to do with grace! I stress about working up the strength to go with them!
I know exactly how you feel. I feel like since I told my friends that I have Lupus they don’t include me any more. At times I do feel lonely, so I tend to preoccupy myself with things I enjoy. I let my friends know, I can still go out, just not as much, and not to forget about me. Reach out to your friends and family so they can hear from your mouth how you feel, and that you want to see them. Don’t wait for them to reach out because they may just be to self involved to realize that they have been neglecting you. If after all this if it doesn’t work, get out there and meet knew people when you can. Make some new friendships. You are already in a great place! This is exactly why I joined the community. I could use some new friends! Don’t let Facebook bring you down, because it’s not real when you look at it. Half of my “friends” are people I don’t even associate, and a lot of people use it to self glorify. It’s not reality.
Even positive people get hurt when they are excluded from invitations to family events! Being up beat and positive only goes so far with things. I feel your pain!
Facebook is hard to take, as most of those folks are well, have well placed jobs, take great vacations, can RSVP and show up, because they are WELL, can do the things that well people do.
I am very sorry your family has treated you in this manner, nothing hurts you more than being hurt by those you love. Disease can really break things apart, but luckily, it can also bring people together! I have made such wonderful friends on the Ben's Friends sites, and I have a good feeling that these friends will be for life.
If I may please suggest, It may be worth a few counseling visits to get some advice on coping with them and how you feel about them. I never would have considered it until I became so ill, and was treated badly by my 3 remaining brothers, and it really has helped, I talked to a great lady for about 2 years.
You are not too far from me, I am about 70 miles West!
Hi there I am going to take time to vent with you , it is so amazing how when you have a illness or if you are sick people tend to disappear.Having family is vital but having understanding and compassion to your illness is a plus, We do not want sympathy because we don't have time to feel sorry for our selves , We just want the respect from others to understand that as we deal with lupus we can have a flare up at any time but we have lupus ,lupus does not have us,and when having these flare ups does not mean we don't want or value the company of those that truly care about our welfare. Please do not think these aches and pains , the sweating, the joints hurting, fatigue and weakness , rashes we bare that we endure this as a joke or we do not pretend we are in pain one minute and OK the next , These are the cards we were dealt and sometimes you feel like a joker and sometime you feel like a ace and sometimes you feel like a diamond, but most of all you want someone to feel your heart and understand it aches when you feel like a outcast.Sometimes you have to create a different family one that understands your pain, I don't want you to disregard them I want you to regard your feelings and self worth and if they come around and you decide to reach out so be it ,if they don't so be it and keep it moving you have to much on your plate with your health issues and the last thing you need is stress, stress flares up our lupus.woooooooooooo,left for docots apptment today , God bless , you dont always have to be blood related to have family
Well said mate for Nu to reflect on besides other member's.
It is a shame as you can see Nu is missing her family but at the end of the day who's really losing out, her family because i only know Nu by chatting on the site and becoming good friends and to me she's one in a million and as always got so much to offer.
Thanks everyone for the advice and encouraging words....I had my one day of feeling down and out but now I'm back. I agree with most that I should put my feelings out there but I feel like I've tried and I even called to vent to my brother. He helped me understand that I should just focus on my health and anyone that wants to be a part of my life accept but those in the family that seemingly haven't had much to say just let them go. As much as it made sense it is still hurtful but I'm going to follow his advice. I have my LWL family and my mom, dad, brother and six kids and six grands to give me all the love the can. Again thanks and I will try not to have any more pity parties any time soon. :-) still smiling
Thanks everyone for the advice and encouraging words....I had my one day of feeling down and out but now I'm back. I agree with most that I should put my feelings out there but I feel like I've tried and I even called to vent to my brother. He helped me understand that I should just focus on my health and anyone that wants to be a part of my life accept but those in the family that seemingly haven't had much to say just let them go. As much as it made sense it is still hurtful but I'm going to follow his advice. I have my LWL family and my mom, dad, brother and six kids and six grands to give me all the love the can. Again thanks and I will try not to have any more pity parties any time soon. :-) still smiling
I am also taking your advice and not disregard my family but regard my feelings. I so often try to please others without giving consideration for myself so for once I'm going to be selfish. While I wish none of us had to suffer with Lupus it does feel good to have a place to come where people share not only my symptoms from the disease but also experiences with relationships as well. Thanks again for the advice.
lia mason said:
Hi there I am going to take time to vent with you , it is so amazing how when you have a illness or if you are sick people tend to disappear.Having family is vital but having understanding and compassion to your illness is a plus, We do not want sympathy because we don't have time to feel sorry for our selves , We just want the respect from others to understand that as we deal with lupus we can have a flare up at any time but we have lupus ,lupus does not have us,and when having these flare ups does not mean we don't want or value the company of those that truly care about our welfare. Please do not think these aches and pains , the sweating, the joints hurting, fatigue and weakness , rashes we bare that we endure this as a joke or we do not pretend we are in pain one minute and OK the next , These are the cards we were dealt and sometimes you feel like a joker and sometime you feel like a ace and sometimes you feel like a diamond, but most of all you want someone to feel your heart and understand it aches when you feel like a outcast.Sometimes you have to create a different family one that understands your pain, I don't want you to disregard them I want you to regard your feelings and self worth and if they come around and you decide to reach out so be it ,if they don't so be it and keep it moving you have to much on your plate with your health issues and the last thing you need is stress, stress flares up our lupus.woooooooooooo,left for docots apptment today , God bless , you dont always have to be blood related to have family
Thank you Terry for all the kind words that you have given me. You have been someone that I look forward to hearing from because I know that you will have something inspiring to say. Glad to have you as part of my family.
Tez_20 said:
Hello Lia,
Well said mate for Nu to reflect on besides other member's.
It is a shame as you can see Nu is missing her family but at the end of the day who's really losing out, her family because i only know Nu by chatting on the site and becoming good friends and to me she's one in a million and as always got so much to offer.
Thanks SK I may look in to counseling to help me deal with the hurt and pain I feel from not feeling like a part of my family.
SK said:
Dear Nu,
Even positive people get hurt when they are excluded from invitations to family events! Being up beat and positive only goes so far with things. I feel your pain!
Facebook is hard to take, as most of those folks are well, have well placed jobs, take great vacations, can RSVP and show up, because they are WELL, can do the things that well people do.
I am very sorry your family has treated you in this manner, nothing hurts you more than being hurt by those you love. Disease can really break things apart, but luckily, it can also bring people together! I have made such wonderful friends on the Ben's Friends sites, and I have a good feeling that these friends will be for life.
If I may please suggest, It may be worth a few counseling visits to get some advice on coping with them and how you feel about them. I never would have considered it until I became so ill, and was treated badly by my 3 remaining brothers, and it really has helped, I talked to a great lady for about 2 years.
You are not too far from me, I am about 70 miles West!
I used to try to preoccupy myself but the thing I love to do which was crochet I no longer can do as much as I used to, I'm trying to over compensate but watching the grands but that only tires me out. Anyway I'm glad to have made a new friend. Thanks again for the kind words you wrote.
RisaRae said:
I know exactly how you feel. I feel like since I told my friends that I have Lupus they don't include me any more. At times I do feel lonely, so I tend to preoccupy myself with things I enjoy. I let my friends know, I can still go out, just not as much, and not to forget about me. Reach out to your friends and family so they can hear from your mouth how you feel, and that you want to see them. Don't wait for them to reach out because they may just be to self involved to realize that they have been neglecting you. If after all this if it doesn't work, get out there and meet knew people when you can. Make some new friendships. You are already in a great place! This is exactly why I joined the community. I could use some new friends! Don't let Facebook bring you down, because it's not real when you look at it. Half of my "friends" are people I don't even associate, and a lot of people use it to self glorify. It's not reality.
I think what hurts the most is just as you said my family treating me like I'm invisible. Just because I have Lupus should not mean that I no longer exist to the family.
Kadeeeee said:
Nu, I'm so sorry your family treats you like your invisible. It sounds like your mom inserted her opinion where she shouldn't have. It doesn't sound like they're being malicious.
I like Dewing's suggestion. Post old happy memories and photographs of everyone at different parties on facebook! Just stay positive but let them know how much you miss them and you hope they'll include you in future events. Let them know you aren't shy and will tell them if you don't feel well enough to attend, but would like the opportunity to go if your feeling better that day. Let them know how much you miss them.
Another thought is to ask your son to take you to the next party as 'his date'. He may also be able to give you insight about why you're being excluded.
Or, how about inviting one or two of them to your place for coffee or tea. Again, stay positive and try to laugh during their stay.
I don't understand what it is about Lupus that makes people turn their backs. My husband has a cancer and he seems to get a lot of support, but my disease is pretty much ignored so I do understand. I told my husband, 'I've got to find new friends!' lol Since we have only a 20% chance of dying from a Lupus related illness, they think it's 'all good'. They have no idea how much pain and trauma we go through each day.
On the other hand, my daughters invite me to things I find seemingly impossible to do with grace! I stress about working up the strength to go with them!
You are right I look at facebook and it seems as if everyone just goes on with their life as usual while on a daily basis I have no idea how my day is going to go. I don't think that posting my feelings will help because I'm not a partier or drinker and that is what they look for when including everyone. That doesn't mean I don't want to have someone check on me from time to time though.
Dewing3569 said:
Nu direction
I understand what you are going through. My family is turned off by the idea that I have lupus. My friends have disappeared and I live thought Facebook to stay connected. I see their lives going on and I am not a part of it anymore either. So yes that smile that is not on your face is understood. It Hurts!
Did you think about posted your feeling on Facebook to all of them? Maybe that will get their attention.
