Anyone want to smack family members

I do. I talked to my adopted dad today. I tried telling him about what my body is going through and how when I do little things like pickup toys after daycare children my temp goes up, you will love this one. Well maybe you need to excersie. Or better yet he told me how I need to do what him and his new wife are doing join a square dancing group. 

My oldest's daughter husband ( which was my husband four years ago)( whole nother story) he asked me if my sugar was up, wanted to know about drinking, and he wanted to know about iron.

I just want to smack these people and make them get a clue.

The reason why I talked to my ex. is he was there when a dr. looked at my MRI years ago.

Veronica

Veronica
It is indeed hard for them to u/stand our illness; even my mom today still thinks that it is me who must have not been eating right so that I have lupus. Well! She's old and hard for her to understand. I just leave it.

Oh yes, it is always a dreaded conversation with my sister, I have never really gone into any detail about anything with any of my family except for my husband and my biological daughter (not my stepdaughter). 

My Rheumy diagnosed me with Inflammatory Arthritis, so that is what I told my family.  Never even mentioned Lupus at all.  Guess I should have but just couldn't bring myself to go into details with all of it.

My sister asks almost every time I talk to her how my arthritis is doing.  I get really tired of her asking and always say good or just fine even if I'm not.  My mother seems to understand more because she is 94 years old and has old age arthritis too. 

My daughter can just tell by the way I act how I am feeling and asks at appropriate times.  But we are very close and sometimes I think she can read my mind.  But anyway I understand how you feel and sometimes wish I had never told my other family.  It is frustrating.   No getting around family member comments though.  Have to live with it.   Take care just a few thoughts

AnnieRae

I think that most people just dont understand, unless they are either sick or have been sick in the past. My parents are very understanding and compasionate. But my husband and his family are clueless and I try to avoid conversations about it. Just last night my husband suggested that maybe if I had exercised more before I got sick, that maybe I wouldnt be this way. Yeah, right. I told him that I would have gotten UCTD no  matter what I did or didnt do in the past. He said "You dont know that!" Ok, whatever.

 I feel bad that we all have to go through this and hope that we all have at least one or two people that we can confide in. This website is such a blessing.

Your post brought back memories for me. My sister in law called me one day, accusing me of faking. Telling me I was a horrible mother, didnt take care of my family, only looked out for myself. Told me that my illness was all in my head. That migraines werent that bad, that everyone gets tired, that she felt weak sometimes too.

It absolutely broke me. I crashed. It affected me in ways I could not begin to imagine.

Mostly because it was my worst fear. I feared inside myself, that this was the case! It was before my diagnosis, when all the "ologists" as Tammy put it, were telling me nothing was wrong, that I had anxiety. I feared others viewing me as weak, less than, unproductive, lazy and a hypochondriac.

It took some long hours of talking by my husband over the next few days to help me understand.

My sister in law had always been competitive with me. I was a stay at home mom, she was a corporate whirlwind. We were exact opposites. Instead of realizing that it takes all kinds, we allowed our fears that the other was "more right" than we were to get in the way of a relationship.

They came to my house for Thanksgiving, I had to cancel her house for Christmas, she thought I canceled just to hurt her. In reality I had had a migraine for days and could not take light, noise, or smells of any kind. But try explaining that to someone who thinks migraines are just bad headaches.

Whenever someone acts that way toward another, it is usually because of their own insecurities and hurts. I try to look at it that way now. Their own fears causing them to act out in a certain way... nothing really to do with us at all.

Our reaction too, is caused by our own fears.

Even now I wonder, did they get the diagnosis wrong. Am I just a whiner, does everyone else feel like this and just push through, am I trying to get attention etc. etc. etc.

Its wonderful that we have this safe place to come and vent our frustrations, our fears. To hear other voices echo our own thoughts. Its healing and I'm very grateful.

darlene

Count me in too!!!

My sister (who also has Lupus) said - are you ready for this - the fatigue is "mind over matter".  I remember her complaining about being sore, tired etc and sleeping 24 hours a day on her days off (when she worked)!!!  I also remember my mother being super supportive of her and always going on that she works too hard etc....  She doesn't work anymore and basically sits around most days (had a bad car accident  - also said not long ago that the accident "knocked the Lupus right out of her").  Should I retort that the depression she suffers is also "mind over matter"?  

Then there's my mother - She said that perhaps I shouldn't come on this website because it might put things in my head - pardon???  I was so angry with her that I cried that night. 

The part that bothers me is that my mom is so "your poor sister"... GGRRR!!!  I'm not surprised at that part though - it's always been that way.  My husband even comments on it too (my sister is 51 and I'm 41 - enough already).

I'm glad you posted because I have been feeling angry this past week and it is good to get it off my chest.

Nuff Said...lol

Sands...

Trust me I think there are people in all our families we would like to slap. My mother in law recently gave my hubby the third degree about me being a drug adict because I take Imuran, plaquenil, and then Humira now Enbrel. She has no idea I take pain meds. She thinks if I take any kind of meds it makes me a drug adict. My mother thinks I can cure myself with herbs and food. Most of my family thinks I am not sick at all but malingering. The worst part is that they watched me almost die and could have cared less. Only my husband and (to some extent) my grandma are supportive. My husband knew what was wrong with me before I did or the doctors. He was the one who started them looking into it. I think sometimes family is our worst enemy. I sent the spoon theory in my christmas cards this past year. I figure I will send more info this year or next so slowly they will understand. I mean I have more than just lupus and they act like I am faking and should just be normal. Worse they blame me for my illness claiming if I didn't want to be sick I wouldn't, Thank Goodness my hubby knows better and that my grandmother was so scared by what she saw when I got so bad sick in 2005 that she has decided to believe in the disease and that I can't control it- she denied her mother, aunt, and sister were ill and they all died from lupus- add to that my grandma has lupus herself- doesn't want to believe or accept it more willing to believe fibro- and she is a nice ally.

Same thing here. My husband doesn't understand and I don't know if he ever will. I don't want to end up in the hospital to prove it either so I just tell him like it is and tell him that I cannot do this or that but of course I fell absolutely guilty about it. I don't like to remind him because I don't want him to feel bad for being stuck with someone sick for the rest of her life. Major GUILT let me tell you!!

The only person that seems to get it is my grandmother. Her step daughter (my aunt) died from Lupus complications (I never knew she had Lupus before I got sick) and my grandmother used to take care of her so she knows how bad it can be. She cried when I told her I was sick with possible Lupus and she is always calling to check on me. I also have two cousins with Lupus (again didn't know they had it until I was sick) and even though we are miles and miles apart and we never kept in touch, now we have become email buddies and give each other support.

I am so glad that you touched on this subject. This subject has caused me many heartaches in the last four years.

 

Four years ago I was severly injured in a car accident and I was left disabled. I was diagnosed with a condition called RSD. Then in September of last year I was diagnosed with Lupus as well. Well since then my husband and I recentlyl learnt about some rumors that were being told about me. It turns out that the people spreading these rumors about me were our next door neighbors, who also happen to be my husbands Aunt and Uncle. They were telling everyone that would listen that I am faking, I am doing this for attention, I want people to feel sorry for me and I am making it seem worse then it really was. They also sent a letter to the Insurance Company of the truck driver who hit me, telling them that I was faking, that they watched me get in and out of my pool without a cane, watched me walk around my yard without my cane, watched me hang my laundry up, etc etc.

 

I was devasted when I heard these rumors and my husband and I finally had it out with them three weeks ago.

 

What these people didn't know was that it took me 16 months of physio therapy to learn to walk again, and that was going three times a week for 2 hours a time, and that I am still in extreme pain every day and will be until the day I know longer breathe. The RSD will eventually cripple me and who knows what the Lupus will do to me.

 

I can't understand how people can be so cruel, especially family members.

 

So I say to everyone who has family members who don't understand what we are going through, if they aren't willing to learn or understand what Lupus does to us, then they aren't worth the energy it takes to worry about them.

 

Connie

There are a lot of people in this world who are ignorant and inconsiderate and as hard as you try to educate them, some folks are too closed-minded and judgmental to ever have compassion for those of us who are ill. In some cases, but not all, literature about lupus and other autoimmune illnesses may be helpful. There are some good books on the subject that can be passed around to friends and family members who are interested enough to read them. Some rheumys can give you pamphlets that explain the illness and all it's ramifications, and there are so many good websites such as the Lupus Foundation of America that have pages that you can print off and give to people who want to know more about autoimmune illnesses.

I remember one day when I visited my dad and saw a book about Lupus on his coffee table. I was touched that he was taking the time to know more about me. It's unfortunate that not everyone is lucky enough to have a dad like I did.

Your stories make me sad because I know in many of your cases your loved ones will never understand. For whatever it's worth, we understand. This little family is always here for you.

((((((((Hugs))))))))

Pat