Does it help or hurt us to talk about our illness or should we just be living our life? I find that even though I like coming to the site for help and encouragement through conversation, I wonder if it hurts me or help me. I think about lupus a lot more. Is that the wrong way to think?
This site is a wonderful way to vent, make new friends, find valuable resources, and share experiences that could help someone else. However, if you feel that your focused more on your disease than on living your life, then you need to seek counciling to help you put your life and your disease in prospective.
I think it helps us to talk about how the lupus makes us feel, and also to get moral support from people that have the same problem, I for one do not feel so alone any more after finding this wonderful site,,,,,,i have no support group here on the Oregon coast.....and now I know I am not alone, and so many people feel, an have the same problems as I do , but also there is HOPE, and that Is why I come here, to know that I am not alone, and that there is hope for me and so many others here....purrs..catspaw1955
Hi, obviously there is no right or wrong way to think about our situations with Lupus; however I think I do understand what you are querying. I have often asked myself similar questions. I read most posts & reply to any I feel I can make a real contribution to. Some days I feel 'lucky' after reading the postings as I sometimes feel my position is not as dire as some. Sometimes I think whoa, I wouldn't be doing THAT if I were you or wow, that sounds like a good idea, might work for me. I choose to continue as a part of 'Life with Lupus' & utalise it's resources as I see fit for my situation.
Best Wishes to you, Kaz xo
Sometimes I feel that when I am on this site it makes me think about my lupus more than when I am not! However, I like to come to the site for education it is a great resources of information. Always keep in mind that Sharing experiences helps others. The national foundation for lupus also has support groups in everyone’s area which I find is a good avenue to talk about the disease to others just like me. I find when I talk about lupus to those that don’t understand it becomes a turn off for them. I believe that is because of their lack of knowledge about the topic. So when I need to talk about it I stay close to home! Support group, family members and this website are my friends.
We need to talk to someone and I believe talking about it helps us to maintain a better life style.
Deenie
For myself, I tend to take this site in doses. There is no questioning that it is helpful, both to read what others are saying as well as to express myself (and ask questions!). However, I do find that sometimes it feeds my depression concerning Lupus, or it puts my mind too much on what MIGHT happen, or simply is a source of various kinds of distress. During those times, I don't check in as often, and generally don't say anything either. For myself, it is a cycle, in order to help me be a better me. Do I blame the site or those on it for my negative portion of the cycle? Absolutely not! It's my call for when I've had enough and need to step back, and I take responsibility for that. But I can totally understand the possibility that taking a break from daily reading here is a good thing. That being said, do I think the site is detrimental to my health? Nope, not at all. There is information here, there is help here, there is understanding here. Without these, I don't think any of us would survive, both mentally and physically, as well as we have.
I'd also like to add that hubby was afraid of me thinking too much about Lupus when I first began this journey. It was constantly on my mind, and I was constantly doing research. I was probably mildly obsessive about it, but it was IMPORTANT to me. As I came to have a better and more complete (insofar as that is possible) grip on the facts and the ins and outs of the disease, my obsession relaxed. I thought about it less. That is not tos ay, I didn't think about having Lupus. Every day is a reminder. Every hour. However, I no longer felt the driving need for validation of my symptoms, sharing of possible connections, and sharing of important information concerning Lupus. I imagine my diagnosis helped with that quite a bit. Regardless of the why, it was a stage I had to work through. Don't be too hard on yourself if you find yourself in this stage. It's important to us to learn all we can, to soak it in and saturate our minds with the what-ifs and what-is-thats. Hang in there hon.
Well said Talencia! I’m newly diagnosed, and a lot of times wonder if I’m being obsessive. My poor husband knows more than he probably ever wanted to know. I keep telling him that it’s because it’s so new to me and that I’ll stop soon. It seems strange to be happy to have this diagnosis, but I am, because the years of suffering an unknown are over and I can be proactive in treating and managing this disease now. I’m still loving this site, I learn something new every day. I don’t talk about it with people outside of my family anymore because they don’t know much (if anything) about it and I know there is a feeling out there of this being a make believe disease. I understand their lack of knowledge, I knew next to nothing before I had symptoms.
Talencia-good to know I’ll relax and stop obsessing with the research some day! 
️
Every person is different and every person can have different needs at different times. I think there are times that I need to talk about it because no one in my life understands. It's nice to have people who know what you're going through, but there are also times when I don't want to think about it or talk about it; or that I'm so sick I can't even bear other people's stories of pain and suffering. I'm happy to join in a discussion if I have anything relevant to say, but I don't reply to every discussion. I try to keep my participation here balanced, as we try to keep our lives and lupus balanced.
I understand where you are coming from. I had my husband and a friend tell me that maybe I shouldn’t talk about it so much because it would cause me to dwell on my medical problems. I lived in silence for quite some time and it caused more damage than good. I personally have found that it a lot better to talk to fellow Lupie patients (it makes me feel less of a crazy person) it helps me to feel normal again. I think talking about things in a healthy way and not dwelling on them is better. That is what this site does.This site has given me so much support…love to all my fellow Lupies! 
Talking is some times the only outlet we have to express ourselves freely with others who know what we are going through. This gives us access to education that we would other wise not have. The only way to make sure we get the best care possible is to be knoledgeable about what is going on in our own bodies. If not for others like yourselves I would have never know that some of the things I thought were helping me were actually hurting me.
I know that reading about illness can make a person feel like s/he has that illness- I remember being tested for a lot of things pre dx and worrying myself sick about things I didn’t have. If that’s what you mean, it doesn’t help you to read about lupus. I think it can be useful to be in contact with other lupus people sometimes, for me, and I don’t know anyone else with it. A lot of non-sick people don’t want to hear about illness, or even deal with it at all.
Thank you for your kind responses. Now I know I've been obsessing about lupus and kidney disease to the point that I have not been living my life. I will continue to seek out information like I do everything, in moderation and not 24/7. I like this site and I appreciate your encouragement.
This is a good topic for discussion. I often think about this issue because on the one hand the more you think about something like the pain and obstacles of lupus, the more it impacts your life. On the other hand the advice I always find in articles and from doctors such as: "live as normal of a life as possible and go about your normal activities," is not possible many days. The reality is we are all trying to adapt to a "difficult" situation to say the least, and the fact that this is not something you can treat in the traditional sense like an infection with antibiotics, makes life a constant up and down struggle. You don't heal, you only manage, cope...many times I wonder if this is as good as it is going to get.
We all need to vents sometimes and I think this site is good to share information that is not available on generic websites, but I think it also would be helpful to form discussions that help in ways such as managing daily tasks, tracking symptoms, different ways to manage stress, etc.
This site is pretty much the only place I vent or even “talk” about my lupus. I don’t want to worry my immediate family and I figure my extended family doesn’t really want to hear it. I have so many issues (like many of us do) that I don’t want to be perceived as a hypochondriac. I am not one of those whose identity Is wrapped up in my diagnosis and don’t want to come across that way. I am a person who happens to have lupus but not a lupus patient. As someone has said here before, I have lupus but it doesn’t have me. I think this is a healthy place to vent and get questions answered.
I understand totally, I cannot talk to my mother about it because she does not want to believe I have lupus, so I am glad I found this site too..it really helps to talk about my lupus because everyone knows how I feel, I have a new rheumy doc thru here wich is great, your attitude is great too, god bless you dear.......purrs..catspaw1955
Agree with both of you. It is a touchy issue isn't it? I tend to just say I'm fine how are you? Some then seek me out & ask "Yes, but how are you really?" I give more info then if there is something 'new' going on or often just state "more of the same".
Hi!! Well this is something that Most of us have been through or going through ! It depend on how you look at it! For a while many of my family and friends would talk with disbelief , yeah ! Kid-o, it happens. And standing strong at that moment is a hard job , but You know what is going on with yourself and it is not your job to prove the situation to anyone , So what am getting at is , You are not ashame of your health and who you are! And that should be enough for your satisfaction!! To be Living with Lupus, be proud and keep it moving!..Beverly L.