Recently, my oldest and dearest friend from out of town came to visit for the first time since my diagnosis. I was trying really hard to be "peppy" for her visit, and I thought I was doing a good job. Towards the end of her visit, I was really dragging because I had been pushing it all week. So she was helping make dinner and I sat in the kitchen to visit. We were discussing my illness. Out of nowhere, she told me "not to become one of those people who only talks about their illness".
I was really kind of hurt by her comment, but I brushed it off because I never get to see her and I didn't want to start a fight. I thought I had done of a good job of faking being "normal" but I guess not.
Has anything like this happened to you? How do you deal with it?
Most people don’t really want to know how I feel health- wise, I’ve learned. So I may say what’s going on in a sentence, if they ask twice. Other sick people are more open to talk about your health and telling you about how they feel. Most of my close friends are sick, I guess. It’s hard. My sister told me a few months ago that I talk like I’m going to die, but that I’m on so much good medicine that I’m not going to die. At the time, I had a couple of potentially scary things going on. So I was really worried. It’s like totally discounting my feelings, which is sort of what your friend was doing. So I try to keep it to myself, but sometimes I feel like, why do I want to stay friends with these people? I’m on rocky terms with my sis, who used to be my closest friend. The stress makes me sick if I let it, and it’s not worth fighting and ending up sicker. I’m sick and tired enough without that. But that’s just what I do- just let go of that person for a while. It’s hard to stay really close to people who don’t want to know about the stuff that really matters to to you, it shuts down any intimacy with them. I found the same reaction from people when my brother died, or my mom too. It was like I might do something awkward like cry and they wanted to avoid that. Weird, isn’t it? I’m Sorry that happened to you, it hurts.
I have found this same thing happening with some of my friendships. I am a good listener, so I guess I just assume others will be too. I’m sorry, I know the feeling…we all do.
I understand your pain. An invisible disease is hard to see for many. I have lost friends and family members don’t understand either. I would have a conversation with her and explain how she made you feel and I would ask her why she said that to you. We need to discuss our diease because it helps us with acceptance and knowledge. When people don’t understand I give them a copy of an article called the spoon theory.
Perhaps it is because it is an invisible disease, but I think the average person expects that since it isn't something that keeps THEIR attention all the time when they are with us, they do not expect it to keep OUR attention while we are with them. To them, we seem merely tired and worn out and irrationally focused on minor nuances of our disease. They don't understand that pain is a constant, that our tiredness isn't just the kind like after a hard day's work. I like to try to come up with analogies so they CAN understand. For example, nearly everyone has had a bad toothache in their lifetime. Ask them to imagine that toothache, how they felt, and how likely they were to go and enjoy social things, or how focused on a conversation they would be while hurting like that. Give them something to relate to that they might have an easier time grasping. It can be hard to be on the outside looking in. How we Lupies try to describe things doesn't always make a lot of sense to them because it is so beyond the normal human experience. It doesn't make their words any less hurtful, but maybe, if they truly do care about us, we can find ways to communicate what we mean, at least some of the time.
I have given up on trying to explain or even relate to something they may have. I don’t discuss what they don’t want to hear at the same time I don’t let them know when things get bad either. If they are unconcerned with what I go through in a day why should I bother with keeping them informed when I have to be hospitalized. Friends are supposed to be there for you and if they are not that great a friend keep things pleasent and light but don’t let them in.
I'm sorry you are getting a hard time from your friend and sister.
I'm glad to say my friends care. I do not dwell on my sickness but they will always ask how my last test or dr visit went. I will let them know and then change the subject. On this site I can complain all I want to and keep from boring them. I guess you just have to "go with the flow". It's easier.
Perhaps she was just gently reminding you not to let this illness take over your entire life. Which is easy to happen when we fell rotten all the time - one of our struggles is to enjoy life to the max in spite of our various aches and pains
how could she say something like that to you, I thinik you sh0uld send her a book on lupus so she can start to understand what a horrible disease this is..purrs..catspaw1955
I seem to deal with it all the time. My friends seem to get really tired of hearing that I am "sick" again. I always feel like I need to explain why Im not doing a certain thing or acting a certain way. I don't always want to say well Lupus has done its dirty deed again. Don't let this person bother you. If they ever walked a week in your shoes they might understand what youre going through. I just try to avoid my friends when Im feeling bad. We shouldn't have to live like this but this illness is soo sneaky isn't it? If you ever need to vent I know I will be here to lend an ear. We are all on your side. So don't let ignorant people get to you. I sometimes show people an article on Lupus so they can understand it better.
My daughter, who is a nurse, refuses to talk with me about it. That makes me very sad because she has been my closest confidant. I try not to talk about it with her now unless she asks made specifically how I’m doing. She almost never asks I guess because she doesn’t want to hear about it. This disease is hard.
I had a close friend of many years tell me that I should go work at the Veteran's Hospital so I would see people who are really hurting! I was so shocked I was stunned. After I recovered I told her to read the Spoon Theory. Now when I see her she will ask how I am and I just say fine. Most of my friends don't want to think of me as sick so they just ignore it if I don't feel good. I can tell some may judge my weight gain though. That's why this site is so helpful because we don't judge anyone, we just try to help. You just have to go on and take care of yourself.
Ihave the same thing happened to me like yesterday I rushed around the house so I could have it pretty for my small bible study group anyway it wasn’t much to do so ipushed everyone liked it I felt so good about it well anyway today I’m having a off day tired and hurting all over and even my bowels are giving me fits so anyway my friend calls today to check on me and I told her how I was feeling and she says well you did so well and you dont you live day to day with lupus one day good and the next down
Our society is focused on the young and healthy. 100 years ago people would see family members and neighbors become extremely ill at home, and they would die at home. Today sick people and those near death are to be avoided. No one wants to be reminded that they also have an "expiration date". As others on this site have pointed out, many people with Lupus don't look nearly as bad as they feel, so if we don't look sick, we can't BE sick. It's so tiresome.
Our society is focused on the young and healthy. 100 years ago people would see family members and neighbors become extremely ill at home, and they would die at home. Today sick people and those near death are to be avoided. No one wants to be reminded that they also have an "expiration date". As others on this site have pointed out, many people with Lupus don't look nearly as bad as they feel, so if we don't look sick, we can't BE sick. It's so tiresome.
My husband does not want to hear about any illnesses. I have Lupus, Sj. Syn., Chronic Anemia. I have progressed to monthly Benlysta infusions, wkly Procrit shots, and 24 pills per day. He drives me to the infusions and only ocassionally asks me about how an appointment went. I manage by keeping a Wellness Journal. I am a Secular Franciscan and my faith in God is really is what keeps me going. I do not pray for a miracle, but instead to live life to the fullest. Take care. It is not easy. Peace, Helena.
Most people don't really want to know how I feel health- wise, I've learned. So I may say what's going on in a sentence, if they ask twice. Other sick people are more open to talk about your health and telling you about how they feel. Most of my close friends are sick, I guess. It's hard. My sister told me a few months ago that I talk like I'm going to die, but that I'm on so much good medicine that I'm not going to die. At the time, I had a couple of potentially scary things going on. So I was really worried. It's like totally discounting my feelings, which is sort of what your friend was doing. So I try to keep it to myself, but sometimes I feel like, why do I want to stay friends with these people? I'm on rocky terms with my sis, who used to be my closest friend. The stress makes me sick if I let it, and it's not worth fighting and ending up sicker. I'm sick and tired enough without that. But that's just what I do- just let go of that person for a while. It's hard to stay really close to people who don't want to know about the stuff that really matters to to you, it shuts down any intimacy with them. I found the same reaction from people when my brother died, or my mom too. It was like I might do something awkward like cry and they wanted to avoid that. Weird, isn't it? I'm Sorry that happened to you, it hurts.