I am not very good at expressing living with lupus and kinda give the "its no biggie" to my family. But when i'm in a flare, its written all over my face.
i cry alot from being so tired so they basically now its not all peaches n creams. i just feel like i dont want to talk about it & worry anyone.
I am like you, I haven't told anyone about this support group, either. It's not that I am ashamed, but I know my family will over react and feel as though they are not doing enough. The man in my life wants to be involved with EVERY aspect of my multiple illnesses, especially the Lupus. I feel like this web site is the only thing I have that is mine. I feel like I can express things that I am feeling without judgement. Sometimes he causes more stress for me by trying too hard to understand and sometimes says things that I take, as a put down, like is this part of the Lupus Psychosis that I've read about, when we are having a disagreement. He seems to think that he knows what's best for me but I am the one that knows what's best for me! I am saying all of this to say, I thimk it is your call depending on how you think your family will react to it. Mine will probably want to put me on "suicide watch" or something. lol. He often even has problems with me telling aquinstances about my Lupus as if it is something to be ashamed of. I am in counseling to deal with these issues and my health issues. It hasn't helped much because the therapist doesn't get it either. It's like the saying "you don't know what I am feeling unless you have walked a mile in my shoes". That's how I feel. Everyone on here has walked the same mile and understands so much more, even if they don't know you personally. Good Luck to you and with time, I am sure you will make the decision that YOU are most comfortable with. Write anytime if you just want to talk or vent,
Mechla(MsThang928)
Hi Che Che, Sorry you havent been so good. Everyone here feels the same way. Its really up to you whether you want to tell your family you are on this site. Like Rachel says it all depends on how your family are about it. Everyone comes onto this LWL site for the same reasons. We are all here to be able to talk openly when we want to, and feel less alone with the Lupus. Just knowing there are other people who understand how you feel helps so much. Anyway i hope you can make the right decision for you, take care, love and hugs Astrid40xoxox
I told my friends at work and they were happy for me. Even though you explain to people what it's like, it is hard for them to realize how bad you really do feel. I empathize with people no matter what their illness may be. I think being open with your family is fine. I told my family I signed up with Life with lupus.
If they are like most families I know, they might say "that's nice" or "Good for you" but its not a big deal to them. It means more to you than anyne in your family.
I haven’t told my family either. Not really because I’m hiding it… Just hasn’t come up! I tend to be busy with them when they are home and only come here when I’m alone anyways. I don’t like to complain to my family so instead all you lovely people get to listen to me! =)
I always have tried to put on the 'Mask' and try not to make my diseases sound as bad as they are....after all my brother died from auto immune disease and I do not want them worrying that I am going to do the same. So I have always tried hard to not let show how sick I really feel.
I just do not feel comfortable talking to them or people who are not sick about lupus etc and how i get sick...unless it is flat out asked of me. I just feel that most people really do not care to know.
I am not sure how old you are....if you lived at home and are teenager than you might want to mention it just so they know what sites you are going using. I know this is difficult subject but with some forums/chats i clearly want to know which ones my teenagers were on and what kind of topics were being spoken about. I get how touchy this might be because i also would like to respect them and give them some ability to grow on their own. But on the other hand...i know so many teenagers on improper sites...so i guess it depends on the teenager..but i wish they would be open with me and just tell me.
IF you are adult...than that is up to you....dont think it matters either way. My husband and few friends know i do this and think it is great. They understand...that they cannot possible give me the same support as people living it.
Hey!! one good thing about crying....it finally wears you out and you sleep well!! lol! course on other hand...if you get or have dry eyes....i actually taught myself not to cry because my eyes hurt so bad after i did cry lol! cannot win in this life!
Mechla,
I worked on women's hotline and shelter. One of the warning signs of men who eventually become abusive is men who want to control and know about every thing in your life. The fact he does not want you to tell people about or sounds like he wants to pick and choose...how he thinks he knows what is best for you....all this could be warning sign down the road. It may not....but having seen so much of this...i just rather warn you and have this in the back of your mind....or even speak to your counselor about it.
I like to say this.. i have excellent counselor who is not sick but totally gets it. A good one clearly does not have to experience everything everyone comes in and speaks to them about. They are not their to tell you how to feel or think but to be supportive of you period.
In other words....she should be supporting your feelings about your lupus. Now she may ask you why you have not told anyone but she should never put words in your mouth.
Now if she felt our partner was possibly going to be abusive with you or any children you might have...than yes...she needs to voice that .....but a good one will hope you will see that on your own with out them getting to that point where they feel they must warn you for your own safety.
I hope you look into getting a better counselor and than speak to them about your partner...just to be careful.
And i agree with you...only you know what is best for you..including doctors and if you feel i am way off base on this than you are right not me! i could have just as easily read it wrong way...which happens in messages.
MsThang928 said:
I am like you, I haven't told anyone about this support group, either. It's not that I am ashamed, but I know my family will over react and feel as though they are not doing enough. The man in my life wants to be involved with EVERY aspect of my multiple illnesses, especially the Lupus. I feel like this web site is the only thing I have that is mine. I feel like I can express things that I am feeling without judgement. Sometimes he causes more stress for me by trying too hard to understand and sometimes says things that I take, as a put down, like is this part of the Lupus Psychosis that I've read about, when we are having a disagreement. He seems to think that he knows what's best for me but I am the one that knows what's best for me! I am saying all of this to say, I thimk it is your call depending on how you think your family will react to it. Mine will probably want to put me on "suicide watch" or something. lol. He often even has problems with me telling aquinstances about my Lupus as if it is something to be ashamed of. I am in counseling to deal with these issues and my health issues. It hasn't helped much because the therapist doesn't get it either. It's like the saying "you don't know what I am feeling unless you have walked a mile in my shoes". That's how I feel. Everyone on here has walked the same mile and understands so much more, even if they don't know you personally. Good Luck to you and with time, I am sure you will make the decision that YOU are most comfortable with. Write anytime if you just want to talk or vent,
Mechla(MsThang928)
Hey I am the same way trying to be strong when I told my family I had lupus I thought they would be more in my life but its made them strangers to me even my mother and I stay with my yonger brother he started reading up on it and sometimes he don’t take it well he starts to drink allot I have no one to confert me or talk to till I meet u all I am so gratefully for this website its just hard for me to go on all the time because I use my cell phone but I totaly get it i wish my fan was like urs though when I had my bad flar I called my SIS & she said oh ur still alive how may u help u I was mad & hurt but I to much pain to deal with it .OMG can u believe that
Hi CheChe, it's totally your call!!!! My name is Beverly L. , and i've shared this with my family from the very start of being part of this online family . And it has helped my family alot to see me on the computer through out the day talking with you all !!! ( THEY SMILE ) , it's like a relief is on their face , even though it has been a year now for me Living with LUPUS as of Feb. 7, there is less STRESS from them and it helps with the anogying questions that they might have for me... LOL Well like others have said and i've also mentioned , "It's Totally up to you " . This is the only place that has not changed for me , where am not looked at as if am CRAZIE !!! It's hard , but when i come here it's like am talking with people whom i've known forever !!!! smile -" I feel free ", well hope that this helps you and that you find what your looking for and remember we are always here at all time for SUPPORT " Living with LUPUS ".... Beverly L.
Hi tink, i do know what you mean, i remember when i told my mother years back when i was diagnosed, she actually said she couldnt talk about it as it upset her too much, what did she think it was doing to me then. And then as she is against medications, as she has a phobia about them and all the side effects they can give, she kept going on at me when she asked what i was taking for the Lupus, saying did i really need all those meds, which i explained i did or it could be fatal, she still didnt want to know, and has not been in contact for about 7 years now. My grandmother is in a care home for Alzeihmers and she was the one i was closest too, so i cant really talk to her about it all. My mothers sister is just the same, she would rather not discuss it, and if i cried years back, she would tell me not to, as if i had been bad for even having a tear about it all, family just dont understand what we go through. I have better friends than i do family as far as the Lupus goes. In fact my family caused me so much distress at one point i was thinking of not even going to see them again. It wasnt until i nearly died a couple of times, that my Aunty decided she would visit me in hospital, then realised how serious Lupus could be, but honestly it did seem that she was only there for just in case i did pass away, and then she had done her bit. as i was in intensive care at the time.
I totally understand tink, people do make light of it, they dont understand how serious this is and how it feels to us to be like we are in pain and having so many different things to deal with that the Lupus brings upon us. Its good to have a laugh, but at the right time, and right place, not when you need a shoulder to cry on or someone to talk to about whats worrying you. I think its there insecurities half the time, because they probably cant handle it themselves, they try and brush off what ever we say, as its easier than having to actually deal with the reality of what we have wrong with us. I think alot of people, not just family, but those who are friends who dont have Lupus, or so-called friends would rather remain ignorant, as its easier for them, but thats not a true friendship, friendship is supposed to be a two way thing. And yes you are right this site is great for meeting others who understand what you mean, and who are there for you when you are down, and vice versa if possible. Anyway please dont get too disheartened, now you have LWL, and plenty of lovely people who are here for you whenever you need them. Anyway by for now, take care, look after yourself, love and hugs Astrid40xoxo
tink said:
Hey I am the same way trying to be strong when I told my family I had lupus I thought they would be more in my life but its made them strangers to me even my mother and I stay with my yonger brother he started reading up on it and sometimes he don't take it well he starts to drink allot I have no one to confert me or talk to till I meet u all I am so gratefully for this website its just hard for me to go on all the time because I use my cell phone but I totaly get it i wish my fan was like urs though when I had my bad flar I called my SIS & she said oh ur still alive how may u help u I was mad & hurt but I to much pain to deal with it .OMG can u believe that
i am so sorry that your family has let you down. Mine is not there either but I know deep down the do love me...just they are so afraid i am going to die like my brother that the just cannot deal with it. My younger sister actually has nothing to do with this family and i think now she was the smartest actually. I know she loves me....as she was separating again for like the 3rd time from the family....she kept saying to me how it was not me and she loved me.
my older sister, was not there either for my brother ...in fact the night i knew he was dying i had stopped off at her house where she told me he was dying. Her husband who was RN at same hospital facility just in different city was getting facts right from nurses working on him. My sister could only think of herself and asked us to stay with her...she just had a baby and i realized she could not handle emotions of him dying.
Same with my parents and his wife...they all just pretended he was fine to some great degree and did not want to deal with truth. In one way though it worked out best..i was able to drive my sister in law down to her parents where we told her 2 daughters there father was dead...that was hard.
I can only imagine how badly it hurt when you reached out to your sister and she said such a hurtful remark. I have similar situations from other family members and it hurts extremely a lot.
I see out there in this site and others who have families that seem to really care and i just hope that they realize how lucky they are because so many of us do not and are basically on our own.
but i am again so sorry that you do not have that support. I hope that some friends come into your lives....this is where support groups in person can really become like your family and of course your good friends.
Hey I am the same way trying to be strong when I told my family I had lupus I thought they would be more in my life but its made them strangers to me even my mother and I stay with my yonger brother he started reading up on it and sometimes he don't take it well he starts to drink allot I have no one to confert me or talk to till I meet u all I am so gratefully for this website its just hard for me to go on all the time because I use my cell phone but I totaly get it i wish my fan was like urs though when I had my bad flar I called my SIS & she said oh ur still alive how may u help u I was mad & hurt but I to much pain to deal with it .OMG can u believe that
It is very wise for you to be cautious about who you trust to share LWL with---
I agree with the others that you will know who can share this stuff with. If you think a member of family or friend would ridicule you or use it against you in a fight, then you might want to consider if that person is really going to be supportive; a person who hits below the belt, especially those who try to make us feel crazy are not OK.
Trust your instincts and lean on us.
I don't tell everyone about the stuff we share here because this is one place where I know people will understand. I don't like to burden my family with talking about how much pain I am in or how I suffer this or that because I worry that I will put too much of a strain on our day to day lives. It is different here because we are all suffering from Lupus and don't have to feel apologetic for being sick.
What would happen if you told the man in your life?
When you wonder about it, do you feel fear?
Do you have a strong physical reaction? (tummy in a knot, etc?)
tried to send this 2x already and have no idea where its going so gna try typing it one more time lol
I appreciate all advice, you guys are great! I went to doc yesterday and he decided to give me injection of steriods, which i've never had and kinda freaked out. After i freaked my family got nervous so once i calmed down i told finance, parents and bro that i joined this online support group and they were SO happy for me. As much as they want to help they dont really now what to do but promised to always be there to listen and do whatever i need. I have a big Italian family and we are very close but just dont like to worry anyone but they did ask that i be alittle more open and tell them more so i'll try to meet them in middle. Doc wants me out of work this week to rest and possibly get another injection next week. hoping this one works. I'm very nassau and like sick to my stomach...bad headache also...
Hi Che Che, i am pleased you have been to the doctors, sorry you were so freaked out by the injection of steroids. I have them regularly now. I was abit nervous the first time i had a steroid injection if i remember rightly. Anything new we are given is abit unnerving whether its tablets or injections. I am so pleased your family were okay about the LWL site. Its true people who are close to us dont know what to do for the best, so they often come out with the wrong thing, and often seem really unsupportive, as they have their own fears about everything. Its like people you meet you have never had a health problem in their life, alot of them make stupid remarks and especially those who have never heard of Lupus. I have been so upset by people in the past and their ignorant comments, but now i just try and shrug them off as it doesnt matter how many times you tell a person like that whats what, they arent really listening anyway, its almost like they have gone deaf for the time you are telling them. My husband was actually a great help, as he said to me (when i used to get upset), that why on earth was i getting upset about someone who doesnt have a clue and who doesnt really matter that much, and when you need all the energy you can get, you are wasting energy thinking about their negativity, which isnt going to do me any good in the end, and he was right really. We tend to put too much on who says what or what they say, when really we know who we are, and whats going on and shouldnt have to prove things to them, just as they cant see whats happening inside of us.. Another thing i have come to a conclusion not to expect anything from anyone anymore, as far as the Lupus goes, and that way i am not disappointed, but if something good does happen, like someone does understand for once, then i am pleasantly surprised. This might sound harsh, but after having Lupus for ten years you realise you will never change the way that anyone thinks, if their mind is set whichever way about anything. I am so so pleased though that you had a good response from your family, as this will help you, and they wont feel so pressurised to say the right things, and maybe you can tell them about the people you have been speaking to who are the same as you with the things you have got wrong. Its good you have been told to rest, you probably need it emotionally and physically too. Some of the sickness could be to do with the Lupus, as Lupus does give gastro problems and the headaches as well can be from the Lupus, or it could be that you just have a virus or something, you will get to know what is what with your body eventually. Although sometimes we cant always tell whats what. Do you have any animals Che Che? A cat or dog, or any other animal? Anyway take care, have a good rest, and look after yourself, speak soon, love and hugs Astrid40xoxo
That's true tink, it's funny how people feel about you once you become ill !!! Well for me - " Thank GOD " , my family was more concerned about what was happening to the person , whom they knew to do any / everything , to go places and just be a free spirited person , untill back in Aug. 2011 , i woke up and had to have someone help me out the bed to go to the bathroom- yeah !!!! Oh boy it was soooooooooooo scarey . After that day of just staying in the bed - 2 days later i really could not walk at all ! it scaried my mom so bad , she called 911, when they got here to the house, my legs where soooooooooooo swollen and fleshed red - i was screameing in so much PAIN , it hurt for me to be touched .... Arriveing at the hospital the doctors wanted me to walk - that was really in possible !!! So they ran tests and come back with it was the early stage of arthritis!!!! So they gave me pain pills had made appointment for a followup with a doctor , well going to see this doctor he stated to me that a seris of bloodwork had to be done , but it would take abaout 2-3 months B4 they would give me answer . So then the test were done in Dec. 2011, they came back in Feb.7, 2011, and said Beverly , you have LUpus , ( things in between then were very hard - family and friends were like there's nothing wrong with you , your fakeing , and i don't believe you ), those were the things that the people whom i loved said to me sending me into greater depression, whiched caused me to start back seeing my Phych doctor , moving on with the story, when Feb.2011 day came , my oldest son moved back home from Cal. to help me - he was the only one whom didn't change on me at this moment , anyways , he was there with me when the doctor said it was LUPUS , i didn't know what it was and couldn't figure out whom gave it to me - i was crying like a newborn baby ... LOL The doctor stop , turned around and asked " WHY ARE YOU CRYING ?" i said " I don't know who could have gave me this , i practice safe sex!!! " , well , he laughed and said no Beverly -you gave it to yourself !!! yeah - right! you just telling me that so i won't go kill somebody , but , i stopped crying and said to the doctor "WHAT ?" Then he explained what the (hell ) was happening to me and that it might get worser if i didn't take care of myself. I said B4 i knew it "What? , i do herps and eat right " how in the (hell ) did this happen to me . He replies family bloodline , or other things in my surroundings , "WHAT ?"So after leaveing the hospital i came home right away , got on the computer and started reseraching on my own ,and boy it shocked me so bad i had to lay down for 2days , just to get my thoughts 2gether. Then my son oldest son pull me to the side and said, we are going to go through this with you , my other 2 kids agreed also , and boy they really help me when it comes down to the family / friends that carry the stress level to a high - they don't allow it . So to sum this up , it's okay if they ( family / friends ) are afarid , they really don't know what it is / or what it can do , so just try your best to communicate with them as best as you can and feel relaxed around them , hopefully !!! , they will see that you want them to be apart of this in your Life !!!! Hope that this help a little ... Talk with you later ... Beverly L.
P.S. sorry this so long ... SMILE
astrid40 said:
Hi tink, i do know what you mean, i remember when i told my mother years back when i was diagnosed, she actually said she couldnt talk about it as it upset her too much, what did she think it was doing to me then. And then as she is against medications, as she has a phobia about them and all the side effects they can give, she kept going on at me when she asked what i was taking for the Lupus, saying did i really need all those meds, which i explained i did or it could be fatal, she still didnt want to know, and has not been in contact for about 7 years now. My grandmother is in a care home for Alzeihmers and she was the one i was closest too, so i cant really talk to her about it all. My mothers sister is just the same, she would rather not discuss it, and if i cried years back, she would tell me not to, as if i had been bad for even having a tear about it all, family just dont understand what we go through. I have better friends than i do family as far as the Lupus goes. In fact my family caused me so much distress at one point i was thinking of not even going to see them again. It wasnt until i nearly died a couple of times, that my Aunty decided she would visit me in hospital, then realised how serious Lupus could be, but honestly it did seem that she was only there for just in case i did pass away, and then she had done her bit. as i was in intensive care at the time.
I totally understand tink, people do make light of it, they dont understand how serious this is and how it feels to us to be like we are in pain and having so many different things to deal with that the Lupus brings upon us. Its good to have a laugh, but at the right time, and right place, not when you need a shoulder to cry on or someone to talk to about whats worrying you. I think its there insecurities half the time, because they probably cant handle it themselves, they try and brush off what ever we say, as its easier than having to actually deal with the reality of what we have wrong with us. I think alot of people, not just family, but those who are friends who dont have Lupus, or so-called friends would rather remain ignorant, as its easier for them, but thats not a true friendship, friendship is supposed to be a two way thing. And yes you are right this site is great for meeting others who understand what you mean, and who are there for you when you are down, and vice versa if possible. Anyway please dont get too disheartened, now you have LWL, and plenty of lovely people who are here for you whenever you need them. Anyway by for now, take care, look after yourself, love and hugs Astrid40xoxo
tink said:Hey I am the same way trying to be strong when I told my family I had lupus I thought they would be more in my life but its made them strangers to me even my mother and I stay with my yonger brother he started reading up on it and sometimes he don't take it well he starts to drink allot I have no one to confert me or talk to till I meet u all I am so gratefully for this website its just hard for me to go on all the time because I use my cell phone but I totaly get it i wish my fan was like urs though when I had my bad flar I called my SIS & she said oh ur still alive how may u help u I was mad & hurt but I to much pain to deal with it .OMG can u believe that
Even though you have a natural family , Living with LUPUS is here for the support that everyone needs - eventhough we really don't know each other personally !!! Sorry that you guys are haveing this experinces with family , but the other family is ALWAYS HERE !!!! just stay in touch with us ... Beverly L.
P.S. even for the smallest thing / or just to VENT.... !!! Smile
Happy to hear that you shared this with your family !! Just stay relaxed as much as possible when your trying to explain how and what you are feeling (PAIN) , they will be there for you . And the more information that you find out share it with them right away , keep them up on the news- it helps alot !!! .... Beverly L. good luck
Che Che said:
tried to send this 2x already and have no idea where its going so gna try typing it one more time lol
I appreciate all advice, you guys are great! I went to doc yesterday and he decided to give me injection of steriods, which i've never had and kinda freaked out. After i freaked my family got nervous so once i calmed down i told finance, parents and bro that i joined this online support group and they were SO happy for me. As much as they want to help they dont really now what to do but promised to always be there to listen and do whatever i need. I have a big Italian family and we are very close but just dont like to worry anyone but they did ask that i be alittle more open and tell them more so i'll try to meet them in middle. Doc wants me out of work this week to rest and possibly get another injection next week. hoping this one works. I'm very nassau and like sick to my stomach...bad headache also...
Its totally up to you. There is no right answer or wrong answer. For me, joining this group was about cameraderie and the "no" judgement factor. I was also afraid that if i lean on my family early on, that later if and when it gets worse they will not be sympathetic. This may all be nonsense but there it is...share what and when you want and keep to yourself whatever you wish....either way it is empowering to control little things especially when it feels that you own body is out of control.
My grandma just found out I've been joining support groups online. I told her it is a great way for me to not feel so alone and know other people like me are out there. Her first question was "Has anyone been cured yet?"
I've explained things to her many times before but I don't think she will ever accept fully what lupus is or does to me. I definitely put on my "smiley face" when around her and other family members.