you can lean on us ,sorry about the pain and can relate to others not believing you are in pain ,pain is pain, some sever than most,imagine a child going through this and not understanding why he or she is in pain, have mercy we didnt ask for this but imagine if a child had to endure this pain and not understanding why they are hurting so bad, why they cant play or why they have to take so much meds,I miss not being active but I half to put in my mind I have lupus ,lupus dont have me.
Kadeeeee said
LOL...I tell my husband that I can't expect him to understand what I'm going through, because I don't understand it either! All I know is I can't! It's weird, the only thing that gets him worried about me is when I start sweating for no apparent reason! I think he may believe I have a misdiagnosis and that I have cancer. My pain doesn't seem to get through to him nor do the nights I don't sleep. It's only the sweating!
It seems that friends don't understand Lupus either, so they think I'm just lazy. I've never been a lazy person and was, at one point, the principle support of our family. None of that seems to mean anything. I tell my husband I need to get 'out there' and meet new friends who will accept me for whom I am now. It hurts though, when supposed friends don't think I do enough for him. Who do they think spends hours sitting in doctors offices and finding the clinical trials on line. Who worries and cries herself to sleeplessness? I do try to offer as much emotional support as I can, but who do I turn to when I need support? I don't have any visible signs of Lupus yet and almost wish I did, so I could point at it and say, 'See!'
I had a friend ask me was it contagious, I wanted to smack her. If it was, so that means you not going to be my friend no more. I been kknowing this woman since first grade. people just dont no what to say or do... Its a bit funny to me.
Hi tanya, oh my goodness that is really terrible that your friend asked you if Lupus was contagious, just shows how ignorant some people can be. Its annoying she didnt just think she would go and look it up before asking stupid questions like that. I dont blame you for feeling like you did. I keep saying about this book i read called How Can You Not Laugh At A Time Like This by Carla Ulbrich. Carla Ulbrich is a Comedian/Actress. and writer now. Anyway in her book she mentions the top ten stupidest things she had said to her. And what you said about you friend saying is it contagious. In Carlas book under the top ten she has written about one person who said to her, i heard that its contagious, so very similar. Some people can be so ignorant about things. And yes you are right people dont know what to say or do so they say the first thing that comes into their heads without thinking about whether it might be upsetting or hurtful or stupid. People have said really stupid and cruel things to me. And at first i did find it hard not to be upset, but nowadays i tend to just try and avoid the people i know who are likely to say something that is likely to upset me. We have enough going on without having people behaving off towards us. Anyway bye for now, take care, look after yourself, love and hugs Astridxoxox
Hi dragonfli, I have had the same where i have had friends that i mysteriously couldnt get hold of anymore, yet know they are about as other people have actually seen them. I dont understand why they cant cope with us having Lupus as it doesnt change our personalities. I think its a fear thing, that when they see us, who have managed to get something such as Lupus, it scares them that it could happen to them, and they dont want that reminded by being around us and seeing us. I had one friend who was a friend of another friend we had who was dying of Lymphoma, and one day i was really upset, as you would be. And this other friend said to me to not go and see the friend with Lymphoma if it upset me which i thought was awful. And that you dont just give up on someone because they are terminally ill. Anyway when i was diagnosed with the Lupus, i found i couldnt get hold of this friend who had said to not go and see the other friend. And it suddenly dawned on me, she was doing what she had told me to do, and was not going to come and see me as she didnt want to be upset, and was protecting herself from it. I was hurt, but at the end of the day, i thought well if she cant handle it, then she cant, and there isnt anything i could do to change that. I did try talking to her and reassuring her, but that wasnt enough. I had known her since i was at preschool. So it was upsetting. Like you i have made some really good friends online. And those friends have stood by me through thick and thin, and are always there when i need someone.
I havent got any real friends in my neighbourhood either. My best friend died a couple of years ago, and i have been grieving as i lose my father and grandfather in the same month. It is hard to meet genuine people when you arent well. You are so right about people not thinking that we havent got alot to give because we arent well, which is so wrong. I hope to meet someone i can connect with one day as well. I am happy though with all my LWL friends and a few others who i have met through other sites online. Anyway take care, look after yourself, bye for now, love and hugs Astrid40xoxox
draginfli said:
Yes, I have 'lost' several friends - I just mysteriously cannot "reach" them anymore! Some of my family members have been more direct in saying that they just "don't know what to say". I can understand that much better.
The good part is that I have met others here and also through other friends who have stuck by me (via online). These people know that I am more than this disease, yet know that I have this disease. I have found what I consider REAL friends, people who can care as I do, love back and forth unconditionally, support me as I support them and together we understand our limitations or our lack of limitations. They are able to see that I have much to bring to a friendship even though I am not well.
We know who our true friends are when our circumstances change dramatically - the ones who stay are true, the ones who leave are false. The same can be said of our new friends. Our new friends come on board knowing the truth and if they stay, they are true, if they go, they were likely false.
I may not have many friends in my "neighborhood" at this point, but I now have friends all around the WORLD! I hope to meet them all face to face someday - but if not, I can say that I probably know most of them better than I knew any of the "friends" who left me high and dry.
Thanks Lia for responding. It's so hard! my personality type is to be the caregiver and this situation is so difficult. Sometimes I don't trust my own feelings any more. I dont know if they're my feelings or something that stems from my brain lupus. My lack of understanding my own illness has created a lack of self confidence in decision making. Does that sound strange?
Wow, dragonfli...When I grow up, I want to be just like you! lol
draginfli said:
Yes, I have 'lost' several friends - I just mysteriously cannot "reach" them anymore! Some of my family members have been more direct in saying that they just "don't know what to say". I can understand that much better.
The good part is that I have met others here and also through other friends who have stuck by me (via online). These people know that I am more than this disease, yet know that I have this disease. I have found what I consider REAL friends, people who can care as I do, love back and forth unconditionally, support me as I support them and together we understand our limitations or our lack of limitations. They are able to see that I have much to bring to a friendship even though I am not well.
We know who our true friends are when our circumstances change dramatically - the ones who stay are true, the ones who leave are false. The same can be said of our new friends. Our new friends come on board knowing the truth and if they stay, they are true, if they go, they were likely false.
I may not have many friends in my "neighborhood" at this point, but I now have friends all around the WORLD! I hope to meet them all face to face someday - but if not, I can say that I probably know most of them better than I knew any of the "friends" who left me high and dry.
thanks I try to ask questions that others can relate to and feel comfortable responding ,questions that touch home or if they literally know anybody going through the motions. Tez_20 said:
Hi Lia,
That's such an interesting question because a year after we moved here i was chatting to a lady out the blue and she had lesion scaring's on her face and at the sme time i had large blisters also and she told me you have Lupus, well i never took no notice and after i weas refered to the Dermo and finally diagnosed....i saw Bev and she was in remission, then the following year i saw her again and oh my she'd lost alot of hair the lupus had come back bad and the weight she'd lost was terrible and they'd started her on plaquenil as she only believed in natural herbs to help but the scars of biopsy's etc was terrible on her skin.
You mentioning this though....i've not seen her for a "good good" while but i don't know where she lives.
yes I notice a difference in the lack of calls I said I am going to start reading like I use to going to Barnes and Noble ,like when I was into finances, mutual funds and stocks(havent wrote those words in awhile,I will be focusing more on reading up on Lupus and becomming more knowledgeable.Lia is the name,
SK said:
Hi everyone,
I only have lupus (SLE) as a diagnosis in over lap syndrome, but I do have enough fully diagnosed AutoImmune diseases to tell you that you do lose friends, you will loose friends, many, but you will also make new ones. The new ones will know that you are not well, as you become friends.
The new ones will realize that you do not have the energy or desire to do all the things you once loved to do, or realize that riding in the car causes intractable pain.
It is very painful to lose friends and family members because you look fine, as fine as they do, and they push through their days, weeks, and years, why can't you?
Thanks for all the warm welcomes from your fearless leader and your group!
you know it is nothing wrong with being in a innercircle of people with lupus.
Ann A. said:
I was dx with lupus 45 years ago. Your question made me reflect on many of the people who have left my life since that day. I have lost a number of friends over the years. I have lost friends to many illnesses. My two best friends from childhood are gone - one lost to a stroke caused by PV when we were in our 40s and one to pnemonia when we were 60. Having lupus has made it more difficult for me to hangout and make firends. I have lost touch with people who need lots of face time. But my real friends are the people who know all about me and like me anyway - cause I got some much larger flaws than lupus.
Its funny how many people are in your circle when you want to party,smoke, drink and do un natural things, your phone is ringing off the hook,but when you are sick are going through the obstacles you check your phone to see if their is a dial tone.
draginfli said:
Tanya -
That is terrible what your friend did! Smart people know that if we were so very contagious, we would likely be in quarantine so we didn't spread our disease to the people around us. We know that there are contagious illness out there and the folks who have them are not quarantined, but one of my responses to that question is (I add a little grin) "Oh yeah, they let me out of quarantine FINALLY! I'm okay now though, so don't worry too much!"
I don't like rude people much. I don't always make a comment, but sometimes I just can't help myself and I can't hold back! I don't react in anger though - just in some sneaky funny stuff. It always makes me feel better! LOL
Hang your heads high ladies (and gents) we have a strong group here! A strong group of friends we can count on!
tanya said:
I had a friend ask me was it contagious, I wanted to smack her. If it was, so that means you not going to be my friend no more. I been kknowing this woman since first grade. people just dont no what to say or do... Its a bit funny to me.
you know it is nothing wrong with being in a innercircle of people with lupus.
Ann A. said:
I was dx with lupus 45 years ago. Your question made me reflect on many of the people who have left my life since that day. I have lost a number of friends over the years. I have lost friends to many illnesses. My two best friends from childhood are gone - one lost to a stroke caused by PV when we were in our 40s and one to pnemonia when we were 60. Having lupus has made it more difficult for me to hangout and make firends. I have lost touch with people who need lots of face time. But my real friends are the people who know all about me and like me anyway - cause I got some much larger flaws than lupus.
Making new friends that can relate to your pains, fatigue,weakness,sharp pains, drowsiness,anything that you are going through your friends with lupus can relate and be compassionate and understanding, if you say you are having a bad day,your not second guessed, when you need to vent we are here.You dont have to shelter yourself from people that dont have lupus just from the ignorance ofthinking we are contageous.
Ann A. said:
But I keep making new friends too. When I was packing for the hospital in October my daughter started making a list of the people that she needed to contact after my surgery to let them know how it went - she said "Mother, these are your friends." I laughed because there was no one on the list that I met before age 50. I had to give her some names to add.
Lia, when we stopped partying...period...we lost alot of friends. We wanted to grow up and make good impressions on our children and partying is not a part of it. When we drink now, our children used to get upset that we were drunk and what not...lol! We are like well we didnt do much of this when you were growing up, so we are now. Since our daughter turned 21, we go to happy hour with her. We did with our son too. Then we go home and go to sleep! They continue their evening without us.
What I would like to say, even though I need to get ready for work, is that while I have been sitting here waiting to die, after readying everyone's stories, I am not ready. I need to fight this and live my life. I have had this all my life, I just never knew what it was. After I told my boss what was going on, I said I was going to quit my job cause I just could not work anymore. I am a teacher too. I work in a private preschool. While I was waiting for my time to leave, a job popped up that would be more accomodating to my illness. I was given a title and a raise. I work three hours a day, believe me some days it is hard. Who would have thought my illness would give me this position. Also, being that they needed someone with a license so their daycare would not close, I helped them too. They helped me and I helped them. My boss did not want me to sit at home and dwell on my illness. She was right. Although I would not just sit, as I have other interests that I would seriously like to pursue, there are some days I just wander around and think about things that need to just not be thought about.
I need to go to work and will talk to you all later....
lia nuriddin said:
Its funny how many people are in your circle when you want to party,smoke, drink and do un natural things, your phone is ringing off the hook,but when you are sick are going through the obstacles you check your phone to see if their is a dial tone.
draginfli said:
Tanya -
That is terrible what your friend did! Smart people know that if we were so very contagious, we would likely be in quarantine so we didn't spread our disease to the people around us. We know that there are contagious illness out there and the folks who have them are not quarantined, but one of my responses to that question is (I add a little grin) "Oh yeah, they let me out of quarantine FINALLY! I'm okay now though, so don't worry too much!"
I don't like rude people much. I don't always make a comment, but sometimes I just can't help myself and I can't hold back! I don't react in anger though - just in some sneaky funny stuff. It always makes me feel better! LOL
Hang your heads high ladies (and gents) we have a strong group here! A strong group of friends we can count on!
tanya said:
I had a friend ask me was it contagious, I wanted to smack her. If it was, so that means you not going to be my friend no more. I been kknowing this woman since first grade. people just dont no what to say or do... Its a bit funny to me.
My closest friend understands that I'm not well. I talked with her yesterday and she finally understands that if I don't feel like visiting I will tell her and expect her to understand with no hurt feelings. She is coming today to drive me to my dr appt and we are both looking forward to being together. I have one friend that still has the thought that I should be just doing "whatever", she just can't get it. It would be a waste of time to try to get her to understand, I would feel like I was whining and begging for her to accept me. I still love her but I've let it go. It makes you feel lonely enough when you have to give up so much of what you're used to without losing friends too.