Hi Vicky,
That is so true for me also when I put up articles to my FB about support & spread awareness pictures I get no response also but when its other things not related to Lupus awareness or Fibromyalgia I get lots of responses. I have even posted up on my FB I wanted to start a team for a Lupus walk to help raise money for the Pacific Northwest Lupus Foundation & not one of my family or friends have volunteered to be apart of the walk or donate. Just shows how they all are.
Marissa :)
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 think sometimes people fear what they do not know about so they either a)respond inappropriately or b) don't say anything. But you can rant and rave as much as you like here or even to me directly. I get it. Hope you have a great weekend :D
my dad has said that Lupus is just a catch-all phrase when the doctor can't figure out what's wrong with you. In other words, it's a diagnosis for hypochondriacs.
Marissa said:
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 :)
Hello Marissa, no your not being over sensitive you are just expressing yourself, and wanting to feel like someone supports you and cares about how you are feeling is a part of being human. I totally understand how you feel, because I have a sister that sometimes make me feel like I am just whining when my body feels weak, or my joints are aching and my feet may be hurting that day when I am walking etc., my thoughts and prayers are with you. God bless you Marissa
Think of this website as your sacred place to vent, we understand and have been through it all, and have all the time in the world to listen and respond. So go ahead vent away, we love you here at LWL. Many blessings and hugs.
I think we all have some members that understand or took the time to listen when you explained your disease, but we ALL have a family member that is like that.
That's what we are here for. We will listen and like TNMom said, no one will criticize you. If we haven't gone through it, chances are we will at some point.
Hugs,
DeAnne
I agree it is very hard when family members are insensitive about Lupus and fibro. I have three siblings and don't have any contact with one because I just cannot handle the hurtful remarks about my health. He has said time and again that it is all about attitude and that most of it is in my head- this is without knowing anything about the illness. I think for some of our family members they are scared and in some cases they don't know what to say. I always feel like that at a funeral, I feel bad and want to show support but don't know what to say so don't say much. Also it is hard for those who have not gone through this to get it. I remember as a kid I had an aunt with MS and I thought- she is lazy, why doesn't she have a job. Of course I never said this but now with lupus and fibro I look back and see how ignorant I was to her condition.
Everyone at this site has gone through this with some family or friends. We get it and are here for you. Come here and vent with us and you may also try to find a face to face support group.