I am not a daily complainer & usually is pretty good at masking what really bothers me especially when its has to due with a lupus flare or fibromyalgia flare. Once in a while when those bad days are really bad I would vent it helps me get what I am feeling out to cope also. Anyways, I have had a FB for awhile now & thats how I usually keep in contact with family that live far & only twice have I posted a bad day I had about my Lupus/Fibromyalgia and those times I have posted that a Uncle of mine would respond basically telling me to stop complaining about my illness & dwelling on it to move on . It has made me feel bad that I cant even express my feeling about my disease & felt so alone. I have basically isolated myself now. Am I just being over sensitive?
Use this site to vent. We all understand and will not criticize you. Take advantage of those good days and get out to stay connected with the people you love and activities you enjoy. Avoid those that bring you down
This website has been such a blessing. TN and Laura are right, we're here for you. I'm afraid I have very rarely come across people in my day to day life who understand the pain of this illness... I, fortunately or unfortunately, have an aunt who had a life threatening and debilitating condition. Even though she was cured, she is the one who doesn't say a single word about me being sick, just nods when I need to vent and promises to be honest and real. It's enough to get rid of some of the loneliness. I try not to talk to my other family members about it unless I'm certain that I'm in a really, really good place that day, and I have something to distract myself with after a few minutes so I don't start to rant. Talking to people who haven't been through this when you're in a bad place... in my experience it just ends up with everyone on every side really upset with each other. Good luck! Maybe look into local support groups for chronic illness if that's possible?
I agree with the others. I too can have many days ruined by what someone says to me… My mom will ask how I am ( we live 85 miles apart so don’t see each other often) when I tell her about a particular ailment she will most likely always answer with " oh, I get tired, My knees ache, " etc. always compares us. However, she is 80 years old and still works full time, I am 25 years younger and have bee on permanent SSD for 20 years. I finally told her about a year ago that when she says things like that it minimizes how I am feeling emotionally. I think she got it because she has been better about it. I usually try not to complain, my poor son probably hears the most of it. Others simply cannot understand unless they’ve been through similar chronic illness. Thank God for this website!! And I thank God for all of you. I consider everyone on here my "Lupie family ". This is where we need to go to vent and be heard ad understood. Peace, & love to all. You are in my prayers today. ~Maré
Choose some of our letters, and send the links to those idiots that don't understand what lupus and fibromialgia is about. It works, they don't give any silly or stupid remarks anymore. One of my lupus friends children were so unsympathetic about her disease that they actually thought that she was on drugs or overdosing on her current medicine, but the truth is that she have lupus already in her brain, there is a lot of changes that took place and above everything else she having seisures about 4 times a week. She speaks very slowly and sometimes typing messages to me that I don't understand. I regularly mail things and links to them. Now they start to understand and ask more questions.
I am so sorry that people all over do not have loved ones that support them in their stressful lives. I am fortunate that I do and I do realize it too. The unfortunate part is that I have two sisters and a 40 year old son that have chronic pain and auto immune problems too. They suffer as much as I do or worse. We are lucky in the fact that we have this group and the computers to be able to find help and compassion in this manner.
I have a question about how one knows the difference between a lupus flare and a fibro flare? I sure don't know because I don't think I have been out of a flare for a long time. Is there anyone here that doesn't hurt or is exhausted at times? It is rare for me.
I think that I had flareups for years, but I always ignored them and didn't want to deal with them because I knew what they might mean. I finally had extreme symptoms 8 months ago, and they haven't stopped since. Finally got diagnosed and just starting medication now, maybe it will help. I think it depends on what stage of the disease you're in reet, but I'm sure that you know more about it than me.
You remind me a little of myself…pretty good about hiding n all…my family tho lives pretty close, however, it didnt seem to help them understand none the less…i found this website with all of the amazing new friends that actually understand i did as they suggested and started pulling up informational pages and made those closest to me read them…they have neen a tremendous help…but I also believe that the ones in your life that tell you to stop complaining or say it aint that bad simply are uneducated about this disease … start sending links a ton of them if that’s what it takes to make him understand …if he still refuses maybe you should block him from your news feed…because honestly when you need to vent about your pain, you need the support that only those that understand can offer
Instead of isolating yourself you can come out swinging by using FB to your advantage by sharing lupus related articles educating those on your friends list about lupus. I found this site through FB. “Lupus Team” on facebook also has good posts to share.
Marissa, I know exactly how you feel! I try not to let my family know exactly how bad I feel, but at times, I have to vent. The other day, my mother told me I looked "well and pretty". My dad told her that I didn't want to hear that because I didn't want to get well. That hurt.
When I have made a remark about lupus on FB, I get no responses. When I put up something funny, I get lots of responses. That says a lot, doesn't it?
You can feel free to vent anytime you want on here. We understand and care. HUGS!
I'm sorry you are going through what you are. I agree with Kelly and keepkeepinon. Educate and if need be block. I've had to do it myself. This site is the absolute best for venting and you'll always have folks that "get it" here. I understand you feeling isolated and I don't think it oversensitive. I look at it this way, you or I wouldn't tell others that regardless of where their pain comes from. Well, ours is no different. If a person can't respect what you are dealing with or you in general, then for health's sake you may need to limit contact with them. The reason I say that is stress aggravates what we deal with and it may help to minimize your pain. I've had to do it with many people in my family. You will and do have support here- always. I just wish people had more tact about themselves sometimes. But I digress. Bottom line, you aren't alone here. If you need to vent- feel free. I hope this helps.
Hi Reet. I have fibro and lupus and it’s hard for me to tell which is acting up. I do have moments throughout the day where I have no pain or exhaustion. I’m grateful for this, but it took 4 years of daily pain to get to this point. The only change I made in my life was quitting my job. I’m now able to get enough rest. I know there are many who can’t quit their job or they have little ones at home to take care of and I feel for them.
reet said:
I have a question about how one knows the difference between a lupus flare and a fibro flare? I sure don’t know because I don’t think I have been out of a flare for a long time. Is there anyone here that doesn’t hurt or is exhausted at times? It is rare for me.
I totally understand and feel bad for you. I guess we just need to keep our real feelings here. I’ve resisted putting myself out here but now see that it’s the only place I can go to talk to anyone that has a cle. Thank everyone here for being a bit of sanctuary for someone who truly needs one!
artchick said:
Marissa, I know exactly how you feel! I try not to let my family know exactly how bad I feel, but at times, I have to vent. The other day, my mother told me I looked “well and pretty”. My dad told her that I didn’t want to hear that because I didn’t want to get well. That hurt.
When I have made a remark about lupus on FB, I get no responses. When I put up something funny, I get lots of responses. That says a lot, doesn’t it?
You can feel free to vent anytime you want on here. We understand and care. HUGS!
I totally understand and feel bad for you. I guess we just need to keep our real feelings here. I’ve resisted putting myself out here but now see that it’s the only place I can go to talk to anyone that has a clue. Thank everyone here for being a bit of sanctuary for someone who truly needs one!
artchick said:
Marissa, I know exactly how you feel! I try not to let my family know exactly how bad I feel, but at times, I have to vent. The other day, my mother told me I looked “well and pretty”. My dad told her that I didn’t want to hear that because I didn’t want to get well. That hurt.
When I have made a remark about lupus on FB, I get no responses. When I put up something funny, I get lots of responses. That says a lot, doesn’t it?
You can feel free to vent anytime you want on here. We understand and care. HUGS!
I wish I had the emotional strength to do that but I just don’t. It’s becoming more easy for me to isolate every day. It’s definitely not making me feel better but it’s the only way I can cope right now.
artchick said:
Marissa, I know exactly how you feel! I try not to let my family know exactly how bad I feel, but at times, I have to vent. The other day, my mother told me I looked “well and pretty”. My dad told her that I didn’t want to hear that because I didn’t want to get well. That hurt.
When I have made a remark about lupus on FB, I get no responses. When I put up something funny, I get lots of responses. That says a lot, doesn’t it?
You can feel free to vent anytime you want on here. We understand and care. HUGS!
I had to go on disability in '98 when I was 41 years old. It was the fibro that did that but now I keep hearing it was probably the lupus too. Too many doctors arguing if it was or wasn't lupus. So I do have the ability to rest when I need to do that but I never have a time without pain. I have severe nerve pain in my left thigh that never leaves me, plus ortho problems in my left foot and my right knee. All that doesn't help. I too like just staying at home because it is too painful and tiring to go out. I keep in touch with family and friends though all the time via phone and skype. THAT is something I am very grateful for to have those things.
Isolation sounds like a lonely place to be, but I think we’ve all had to isolate ourselves at times. This is how we heal ourselves when everything around us becomes so overwhelming. Just know you are never truly isolated as long as you remember that your lupus support group friends here know what you are going through, as we are all going through it together.
Thank you everyone you have made me feel so much better. With my family I have come to learn that if its not CANCER you have then what you have is nothing. Lupus to them & fibromyalgia is all in my head making it worse then it really is & I should snap out of it & act like my old self again. I have been diagnosed in 2007 & I didn't open up to my family & friends about it until recently. I was in denial in the beginning & wasn't taking it seriously I would go to all my doctor appts. get my prescription & rolled it off my back trying to cope that way. But it wasn't up until last year that Depression, Anxiety & Panic came into my life & my doctors told me its isn't uncommon for those living with chronic illness to have depression,anxiety & panic attacks. Its 2nd to my main diagnoses. I started seeing a therapist & took classes to learn how to cope better & during those sessions I was encourage to speak to my family & friends about what is going on with me & when I started doing it I didn't get the support I though I would get. I guess in order for that support to happen from them I would have to be diagnose with terminal ill cancer & the doctor has to say I am dieing. I am taking everything you all have shared with me here & going to look at it in a positive way so it doesn't get to me anymore. I will start staying away from those that bring me down instead of giving my encouragment in a positive way. We have enough we all deal with in a day to day basis that those that are clueless & irrogant to what it is Lupus & Fibromyalgia patients really deal with is a waste of my energy dealing with them. Thank you again everyone have a wonderful & blessed day! Take care :)
i did as they suggested and started pulling up informational pages and made those closest to me read them…they have neen a tremendous help…but I also believe that the ones in your life that tell you to stop complaining or say it aint that bad simply are uneducated about this disease … start sending links a ton of them if that’s what it takes to make him understand …if he still refuses maybe you should block him from your news feed…because honestly when you need to vent about your pain, you need the support that only those that understand can offer