Has anyone noticed their friends have been acting strange since being diagnosed with lupus, since your unable to do activities you all use too.
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.
Hi lia, Do you mean you have lost friends personally as they dont know how to react or do you mean people who have Lupus who have been acting strangely. I am assuming you mean your usual friends who are acting strangely towards you because of you yourself having Lupus. I lost a couple of really good friends right at the beginning when i was diagnosed. Its a fear thing, alot of people dont know what to say to you, or what to do. What they dont realise is they just need to be themselves, and perhaps be there occasionally when you arent feeling so good. But some people do find that really hard, so they just tend to disappear or avoid others who have chronic illnesses. Another things that can happen is that some think because they now know about it, and that its possible to get something such as Lupus, they have a fear that if you can get Lupus, they might too. People can be abit strange. There are others who just dont believe it, who say well you look well. I have a good book recommendation if you read. Its called "How Can You Not Laugh At A Time Like This? Its by an author/comedian called Carla Ulbrich. She wrote it because she was diagnosed with Lupus and a few other auto-immune diseases. And she talks about the reactions she had from people when she told them. She has listed the top ten typical things that people can say when you tell them you have a chronic illness. I am sure if you do read it, you will end up identifying with at least a couple of those ten things. I have felt quite alone as far as healthy friends go. I lost my best friend a couple of years ago, she really understood what i go through, but then i think that may of been because she wasnt too well at times either. I miss her soo much. I have tried making new friends here, and i have made a few but i wouldnt call them actual true friends, they are more like aqaintances, because again they are so fearful of the illness. I would say the carer i have is more of a true friend, I have some true friends on LWL of course.. There are some lovely genuine people on LWL, which is such a refreshing change for me. I think when people are like this towards us, due to their own insecurities, there is not alot you can do about it, except start afresh and make new friends which isnt always easy. I just treated the people who were treating me abit strangely as i would normally which was hard, and then just thought obviously they dont want to be with me as much, its time for me to move on now, i found there was no point waiting for them to come around to being able to cope with me having Lupus, so i knew i had to move my life forwards. I hope this answers your question. If i have got the question wrong, and you are talking about the psychiatric side of Lupus, i do apologise. Anyway my dear friend, take care, i am thinking of you, love and hugs Astridxoxo
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!
SK
That is a very good question...I have never had many friends, always kept a close circle but since my diagnosis my circle has gotten even smaller. I don't know if it is them as much as it is me. At first they would reach out and I would be exhausted or in pain or depressed so they would say I don't know when to reach out to you because it always seems to be a bad time. I would also get you seem fine but every time I call you have an excuse. This in turn makes me not want to answer the phone or even have to explain what or how I feel. So to answer the original question yes I have lost friends and at times it seems like even my husband doesn't understand and the argument becomes you never want to go anywhere. I don't like going anywhere because I get tired and I want to be able to lay down. He loves going to barbeques/picnics and I really can't do outside so it seems like I'm losing that battle but I'm trying to push through that. He gets upset and rightful so why should he have to understand that things I once was capable of doing I no longer want or have the desire to do. It's hard enough to realize that I can no longer do a lot of things that I used to do but to realize that because of that I'm losing people I care about is even harder.
yes! its hard for others to understand that you dont feel good...you look great, but feel like crap.. i have lost most all of my friends..
well said SK !! thankyou!
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!
SK
Lia, although I have not noticed anything different, my close friends live far away. We talk on a regular basis, but rarely hang out. I did go out with friends from New Jersey recently, felt ill, explained I needed to leave and they got upset. This is after explaining to them what my illness can do.
My immediate family is gone, due to water contamination that occurred at Camp Lejeune in North Carolina, which I believe where my illness came from. So my husbands family all know that I am ill and never check in on me or visit. So I can relate to you in this way. Yet, when they need something they contact him at work. This is extremely rude and I cant believe they do this. I have never had a close relationship with them anyway, but I do keep in contact with one sister-in-law. This is a lonely road and I did not realize how lonely until I joined this group and found out others feel the same way. Too bad we live so far from each other, cause we could meet for coffee or tea and just chat.
I know this goes off topic, but I regret going out of my way for people and dropping what I was doing to help them. This was wasted time where I could have focused on myself. Selfish perhaps? But I could use some help now and dont often get it. My children moved out and have their own lives and my husband works six days a week. I could use a strapping young man to help me around. Anyone have any suggestions? lol!
This is my first time writing and would first like to say hello to everyone and send positive wishes to all of you. I, too, have noticed a change in relationships with friends. I'm 65 and only recently diagnosed. I've always been mostly happy and active through my entire life except for back surgeries mostly healthy except for fibromyalgia after the first surgery which was awful. A few yeas ago, after my second lumbar surgery I acquired MRSA (staph infection) from the hospital. Because it took so long for insurance approvals, by the time treatment was available to me, surgery was the only course to get rid of the infection. When I awoke from that surgery, I knew something was very different and was never the same. I was tired all the time, the pain was incredible, my brain wouldn't work properly and my memory was nonexistent. I realize now I did have short periods of being in la-la land and extreme fatigue for many years. I blamed it on working, kids, husband and fibromyalgia.
When I couldn't walk from the bedroom to the kitchen without feeling like I'd collapse and my heart would beat out of my chest, I decided to see a doctor for possible heart problem. Quite by accident, I went to an internist who did her internship with a doctor who specialized in lupus and autoimmune diseases. It took her only a full battery of blood tests, diabetes check, ekg, etc. to diagnose lupus. She has done a lot of good keeping me reasonably stable, but I'm still unable to be able to walk outside or cleaning the house for periods of time without sweating and palpitations, irritability, night sweats and compromised memory. I sometimes think I'm nuts, sometimes don't know if it's lupus or if my back and legs hurt legitimately from surgery.
Now to respond to the topic, my husband has a terminal illness and almost died the end of last year. Fortunately, he got into a clinical trial at the most critical moment and his improvement has been remarkably good. His ultimate time line is unknown at this time though I doubt his illness is reversing. I do everything possible to make him happy with my limited strength, but the husband of one of my friends feels I don't treat him as he feels a dying man should be treated. I treat him like there is a tomorrow and refuse to accept his bs as okay. (husband has an aggressive personality). Since my brain is affected by Lupus, I'm now wondering if I'm handling him appropriately or does Lupus make me unable to be appropriate. I'm so confused. Am I being me or am I incapable of understanding how to deal with my husband of 30 years? Should I have counseling or am I capable of making decisions on day to day life?
I, too, look fine, lost the surgery weight and present a mostly positive and happy disposition.
I've read many of your posts and know you'll be able to give me some perspective. Thanks in advance, Kathy
Yes, indeed, I too have many friends who live far away, and we also talk and keep in touch. My latest move was 12 years ago and making new friends came easily. However, since my illness, some of those have silently slipped away. If I didn't take the initiative of calling, my phone would be quiet for days. People don't realize a simple phone call can help with a hurting day. Those who used to go on day trips, out to lunch, or antique hunting, are not there. I take some of the responsibility as often I had to cancel at the last minute or disrupt a plan. I heard a comment or two "Well you know, they always have to have something wrong with them" or "They look as healthy as I do." So that made me withdraw not wanting those comments to be made about me. Also, there was little consideration of plans made to do.. what I could handle..so I guess they felt I would understand..the day would be too demanding, too much walking, too hot, etc..
In some ways, I wish I could relive my good days to be more sensitive to others, to include the handicap, and taylor a day or event for them to bring smile or joy to their faces. ( Not that I didn't care...just didn't think about it). Most don't realize socialization is such a morale booster or makes for a happy heart.
I said the above to show: for some it is not intentional. Perhaps, it is not understanding the illness of lupus. And I've wondered if I could do anything to help my friends understand my plight. Writing this has shed new light on my own responsibility to help others understand where I am. Thanks Lia for bringing up the question! I'll let you know my game plan. Love and hugs your way. Faye
Hi everyone,
I am mainly on the Psoriatic Arthritis BF site, and very often on the Fibro BF site, and I can tell you that this topic goes on forever, like 'family stressors', 'a little consideration' ways' to sleep through the night', and the all time favorite is 'sick and tired of being sick and tired'
SK
I'm sorry to hear about your husbands illness but excited that the clinical trial has reversed it. My husband doesn't have as serious of an issue but he has arthritis, diabetes, high blood pressure and just over all problems from being overweight such as his back hurts and shoulders hurt and he acts as if the world is caving in on him. I don't know if I have just become numb to his pains and health issues or whether I'm just tired from having to deal with my own problems. He gets upset because he wants me to give him a massage like I used to but I try to explain to him I can't because of my hands being in pain or just numb to the point I can't really do massages anymore. He tells me I'm just making excuses. When he is in pain he wants me to rub his pain but again can't do that. So he says I don't care about him. That coupled with the fact that I don't really like to leave the house much has presented us with a whole new set of challenges. Anyway sorry just kinda needed to get that off my chest.
Kadeeeee said:
This is my first time writing and would first like to say hello to everyone and send positive wishes to all of you. I, too, have noticed a change in relationships with friends. I'm 65 and only recently diagnosed. I've always been mostly happy and active through my entire life except for back surgeries mostly healthy except for fibromyalgia after the first surgery which was awful. A few yeas ago, after my second lumbar surgery I acquired MRSA (staph infection) from the hospital. Because it took so long for insurance approvals, by the time treatment was available to me, surgery was the only course to get rid of the infection. When I awoke from that surgery, I knew something was very different and was never the same. I was tired all the time, the pain was incredible, my brain wouldn't work properly and my memory was nonexistent. I realize now I did have short periods of being in la-la land and extreme fatigue for many years. I blamed it on working, kids, husband and fibromyalgia.
When I couldn't walk from the bedroom to the kitchen without feeling like I'd collapse and my heart would beat out of my chest, I decided to see a doctor for possible heart problem. Quite by accident, I went to an internist who did her internship with a doctor who specialized in lupus and autoimmune diseases. It took her only a full battery of blood tests, diabetes check, ekg, etc. to diagnose lupus. She has done a lot of good keeping me reasonably stable, but I'm still unable to be able to walk outside or cleaning the house for periods of time without sweating and palpitations, irritability, night sweats and compromised memory. I sometimes think I'm nuts, sometimes don't know if it's lupus or if my back and legs hurt legitimately from surgery.
Now to respond to the topic, my husband has a terminal illness and almost died the end of last year. Fortunately, he got into a clinical trial at the most critical moment and his improvement has been remarkably good. His ultimate time line is unknown at this time though I doubt his illness is reversing. I do everything possible to make him happy with my limited strength, but the husband of one of my friends feels I don't treat him as he feels a dying man should be treated. I treat him like there is a tomorrow and refuse to accept his bs as okay. (husband has an aggressive personality). Since my brain is affected by Lupus, I'm now wondering if I'm handling him appropriately or does Lupus make me unable to be appropriate. I'm so confused. Am I being me or am I incapable of understanding how to deal with my husband of 30 years? Should I have counseling or am I capable of making decisions on day to day life?
I, too, look fine, lost the surgery weight and present a mostly positive and happy disposition.I've read many of your posts and know you'll be able to give me some perspective. Thanks in advance, Kathy
Yea, they act like I'm contaigous. When you are turning different colors, swelling, sweating, have a rash and a myriad of other things...how can you really blame them. It freaked me out before I knew what was going ! LOL
I am so sorry about your illness yours and your husband`s ,hoping things get better.
NuDirection said:
I'm sorry to hear about your husbands illness but excited that the clinical trial has reversed it. My husband doesn't have as serious of an issue but he has arthritis, diabetes, high blood pressure and just over all problems from being overweight such as his back hurts and shoulders hurt and he acts as if the world is caving in on him. I don't know if I have just become numb to his pains and health issues or whether I'm just tired from having to deal with my own problems. He gets upset because he wants me to give him a massage like I used to but I try to explain to him I can't because of my hands being in pain or just numb to the point I can't really do massages anymore. He tells me I'm just making excuses. When he is in pain he wants me to rub his pain but again can't do that. So he says I don't care about him. That coupled with the fact that I don't really like to leave the house much has presented us with a whole new set of challenges. Anyway sorry just kinda needed to get that off my chest.
Kadeeeee said:This is my first time writing and would first like to say hello to everyone and send positive wishes to all of you. I, too, have noticed a change in relationships with friends. I'm 65 and only recently diagnosed. I've always been mostly happy and active through my entire life except for back surgeries mostly healthy except for fibromyalgia after the first surgery which was awful. A few yeas ago, after my second lumbar surgery I acquired MRSA (staph infection) from the hospital. Because it took so long for insurance approvals, by the time treatment was available to me, surgery was the only course to get rid of the infection. When I awoke from that surgery, I knew something was very different and was never the same. I was tired all the time, the pain was incredible, my brain wouldn't work properly and my memory was nonexistent. I realize now I did have short periods of being in la-la land and extreme fatigue for many years. I blamed it on working, kids, husband and fibromyalgia.
When I couldn't walk from the bedroom to the kitchen without feeling like I'd collapse and my heart would beat out of my chest, I decided to see a doctor for possible heart problem. Quite by accident, I went to an internist who did her internship with a doctor who specialized in lupus and autoimmune diseases. It took her only a full battery of blood tests, diabetes check, ekg, etc. to diagnose lupus. She has done a lot of good keeping me reasonably stable, but I'm still unable to be able to walk outside or cleaning the house for periods of time without sweating and palpitations, irritability, night sweats and compromised memory. I sometimes think I'm nuts, sometimes don't know if it's lupus or if my back and legs hurt legitimately from surgery.
Now to respond to the topic, my husband has a terminal illness and almost died the end of last year. Fortunately, he got into a clinical trial at the most critical moment and his improvement has been remarkably good. His ultimate time line is unknown at this time though I doubt his illness is reversing. I do everything possible to make him happy with my limited strength, but the husband of one of my friends feels I don't treat him as he feels a dying man should be treated. I treat him like there is a tomorrow and refuse to accept his bs as okay. (husband has an aggressive personality). Since my brain is affected by Lupus, I'm now wondering if I'm handling him appropriately or does Lupus make me unable to be appropriate. I'm so confused. Am I being me or am I incapable of understanding how to deal with my husband of 30 years? Should I have counseling or am I capable of making decisions on day to day life?
I, too, look fine, lost the surgery weight and present a mostly positive and happy disposition.I've read many of your posts and know you'll be able to give me some perspective. Thanks in advance, Kathy
My pleasure ,Faye I hope you are feeling ok and lupus hasnot taken the smile off your face, I know it gets hard I can relate .
Faye said:
Yes, indeed, I too have many friends who live far away, and we also talk and keep in touch. My latest move was 12 years ago and making new friends came easily. However, since my illness, some of those have silently slipped away. If I didn't take the initiative of calling, my phone would be quiet for days. People don't realize a simple phone call can help with a hurting day. Those who used to go on day trips, out to lunch, or antique hunting, are not there. I take some of the responsibility as often I had to cancel at the last minute or disrupt a plan. I heard a comment or two "Well you know, they always have to have something wrong with them" or "They look as healthy as I do." So that made me withdraw not wanting those comments to be made about me. Also, there was little consideration of plans made to do.. what I could handle..so I guess they felt I would understand..the day would be too demanding, too much walking, too hot, etc..
In some ways, I wish I could relive my good days to be more sensitive to others, to include the handicap, and taylor a day or event for them to bring smile or joy to their faces. ( Not that I didn't care...just didn't think about it). Most don't realize socialization is such a morale booster or makes for a happy heart.
I said the above to show: for some it is not intentional. Perhaps, it is not understanding the illness of lupus. And I've wondered if I could do anything to help my friends understand my plight. Writing this has shed new light on my own responsibility to help others understand where I am. Thanks Lia for bringing up the question! I'll let you know my game plan. Love and hugs your way. Faye
Hi there and I can relate to needing help,it doesnt cause anything to be nice but these days it is a rarety,It is a blessing to have someone to help we still have our 5 senses , this illness makes life that much harder and without friends doesnt help this is a lonely disease, but with support groups whether online or group sessions. The kindness that you showed others in the past ,dont let anyone take that from you I mean God is all about love ,with that being said I know it hurts but you are a genuine person so dont ley anyone take that from you.
Yes you should concern yourself more about you I had to learn that the hard way too,I have always been a giver and have provided a decade of taking care of my mom.We have each other on this online support group.
JeanJeanne said:
Lia, although I have not noticed anything different, my close friends live far away. We talk on a regular basis, but rarely hang out. I did go out with friends from New Jersey recently, felt ill, explained I needed to leave and they got upset. This is after explaining to them what my illness can do.
My immediate family is gone, due to water contamination that occurred at Camp Lejeune in North Carolina, which I believe where my illness came from. So my husbands family all know that I am ill and never check in on me or visit. So I can relate to you in this way. Yet, when they need something they contact him at work. This is extremely rude and I cant believe they do this. I have never had a close relationship with them anyway, but I do keep in contact with one sister-in-law. This is a lonely road and I did not realize how lonely until I joined this group and found out others feel the same way. Too bad we live so far from each other, cause we could meet for coffee or tea and just chat.
I know this goes off topic, but I regret going out of my way for people and dropping what I was doing to help them. This was wasted time where I could have focused on myself. Selfish perhaps? But I could use some help now and dont often get it. My children moved out and have their own lives and my husband works six days a week. I could use a strapping young man to help me around. Anyone have any suggestions? lol!
I can relate it is hard for others donot have the illness to even beleive that you hurt or ache or suffer from joint pains , fatigue and concerns you have from this illness, if they donot walk in your shoes, remember my friend if you do loose friends God will send you new ones, Life appears to be so unfair, I often why do people who murder, kill, do malice rhings to people dont appear to suffer or some have not endured half as much as I have cannot relate to. that.
NuDirection
That is a very good question...I have never had many friends, always kept a close circle but since my diagnosis my circle has gotten even smaller. I don't know if it is them as much as it is me. At first they would reach out and I would be exhausted or in pain or depressed so they would say I don't know when to reach out to you because it always seems to be a bad time. I would also get you seem fine but every time I call you have an excuse. This in turn makes me not want to answer the phone or even have to explain what or how I feel. So to answer the original question yes I have lost friends and at times it seems like even my husband doesn't understand and the argument becomes you never want to go anywhere. I don't like going anywhere because I get tired and I want to be able to lay down. He loves going to barbeques/picnics and I really can't do outside so it seems like I'm losing that battle but I'm trying to push through that. He gets upset and rightful so why should he have to understand that things I once was capable of doing I no longer want or have the desire to do. It's hard enough to realize that I can no longer do a lot of things that I used to do but to realize that because of that I'm losing people I care about is even harder.
I notice we donot stay far I reside in stockbridge, u in riverdale.
lia nuriddin said:
I can relate it is hard for others donot have the illness to even beleive that you hurt or ache or suffer from joint pains , fatigue and concerns you have from this illness, if they donot walk in your shoes, remember my friend if you do loose friends God will send you new ones, Life appears to be so unfair, I often why do people who murder, kill, do malice rhings to people dont appear to suffer or some have not endured half as much as I have cannot relate to. that.
NuDirectionThat is a very good question...I have never had many friends, always kept a close circle but since my diagnosis my circle has gotten even smaller. I don't know if it is them as much as it is me. At first they would reach out and I would be exhausted or in pain or depressed so they would say I don't know when to reach out to you because it always seems to be a bad time. I would also get you seem fine but every time I call you have an excuse. This in turn makes me not want to answer the phone or even have to explain what or how I feel. So to answer the original question yes I have lost friends and at times it seems like even my husband doesn't understand and the argument becomes you never want to go anywhere. I don't like going anywhere because I get tired and I want to be able to lay down. He loves going to barbeques/picnics and I really can't do outside so it seems like I'm losing that battle but I'm trying to push through that. He gets upset and rightful so why should he have to understand that things I once was capable of doing I no longer want or have the desire to do. It's hard enough to realize that I can no longer do a lot of things that I used to do but to realize that because of that I'm losing people I care about is even harder.
yes you have and I appreciate the wisdom as well as the chance to grow with you,meaning learning from you and your experiences is so refreshing yet genuine.I barely have any friends always been a loner and the few associates I have I feel they wouldnt understand and I still fell ashamed at having oupus, my mom said I shouldnt but i do.I met some new aquaintances when i went to my group counseling on saturday and it was informative.Wishing you the best and hoping you are feeling ok.
astrid40 said:
Hi lia, Do you mean you have lost friends personally as they dont know how to react or do you mean people who have Lupus who have been acting strangely. I am assuming you mean your usual friends who are acting strangely towards you because of you yourself having Lupus. I lost a couple of really good friends right at the beginning when i was diagnosed. Its a fear thing, alot of people dont know what to say to you, or what to do. What they dont realise is they just need to be themselves, and perhaps be there occasionally when you arent feeling so good. But some people do find that really hard, so they just tend to disappear or avoid others who have chronic illnesses. Another things that can happen is that some think because they now know about it, and that its possible to get something such as Lupus, they have a fear that if you can get Lupus, they might too. People can be abit strange. There are others who just dont believe it, who say well you look well. I have a good book recommendation if you read. Its called "How Can You Not Laugh At A Time Like This? Its by an author/comedian called Carla Ulbrich. She wrote it because she was diagnosed with Lupus and a few other auto-immune diseases. And she talks about the reactions she had from people when she told them. She has listed the top ten typical things that people can say when you tell them you have a chronic illness. I am sure if you do read it, you will end up identifying with at least a couple of those ten things. I have felt quite alone as far as healthy friends go. I lost my best friend a couple of years ago, she really understood what i go through, but then i think that may of been because she wasnt too well at times either. I miss her soo much. I have tried making new friends here, and i have made a few but i wouldnt call them actual true friends, they are more like aqaintances, because again they are so fearful of the illness. I would say the carer i have is more of a true friend, I have some true friends on LWL of course.. There are some lovely genuine people on LWL, which is such a refreshing change for me. I think when people are like this towards us, due to their own insecurities, there is not alot you can do about it, except start afresh and make new friends which isnt always easy. I just treated the people who were treating me abit strangely as i would normally which was hard, and then just thought obviously they dont want to be with me as much, its time for me to move on now, i found there was no point waiting for them to come around to being able to cope with me having Lupus, so i knew i had to move my life forwards. I hope this answers your question. If i have got the question wrong, and you are talking about the psychiatric side of Lupus, i do apologise. Anyway my dear friend, take care, i am thinking of you, love and hugs Astridxoxo
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!'