Anyone want to smack family members

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Date Joined Jul 2006
Total Posts : 831
   Posted 6/1/2007 5:57 PM (GMT -6)   
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.

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Date Joined May 2005
Total Posts : 6939
   Posted 6/1/2007 6:19 PM (GMT -6)   
Yeah, sometimes family members or friends or those awful noisy neighbors & acquaintances can make the stupidest suggestions that just make me want to bash them about the head with hob-nailed boots!

I try to remember that they mean well, but sometimes that is darn difficult to keep in mind!!

For this reason, I didn't tell my family (they are 500 miles away) until I was good and ready, prepared w/pamphlets from the Lupus Foundation, stuff from, etc. Then I did a run & dump & escape -- visited for 2 days, told 'em at dinner the last day, gave 'em info & left!!!

It's really stupid how much we have to protect ourselves when those we love should be gathering around to protect us!

Lynnwood, Co-Moderator: Lupus Forum
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Veteran Member

Date Joined Jan 2007
Total Posts : 607
   Posted 6/1/2007 6:41 PM (GMT -6)   
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.

Regular Member

Date Joined Jul 2006
Total Posts : 245
   Posted 6/1/2007 7:54 PM (GMT -6)   
Oh yeah! I have not spoke to my mother in law for almost 1yr. It may not be right but its my choice! She informed me I needed to get over myself! Mind you I thought I was dying! I had just went through gallbladder surgery which didn't help because they still hadn't figured out it was lupus. I guess I'm real stuborn & I will never forget how she treated me. I feel it is her place to make amends not mine. I'll tell you what I'm real sick of is people saying they know someone with lupus that does just fine. It is like they think you are a hypo-c. I have made the choice to stay away from people like this.

Regular Member

Date Joined Nov 2006
Total Posts : 76
   Posted 6/1/2007 9:53 PM (GMT -6)   

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 :-)

There Is Always Hope

Veteran Member

Date Joined Jul 2006
Total Posts : 831
   Posted 6/1/2007 11:25 PM (GMT -6)   
I'm so glad I'm not the only one.


Regular Member

Date Joined Jan 2007
Total Posts : 35
   Posted 6/2/2007 9:43 AM (GMT -6)   
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.

Emily B
New Member

Date Joined Jun 2007
Total Posts : 7
   Posted 6/2/2007 9:50 AM (GMT -6)   
I feel a lot like you do. My family and husband just don't get it. I have been diagnosed as UCTD which makes it even worse because there isn't really a name for this. When I told my parents, they blame me being overweight and not eating right as the causes of all of this. They also think I am a hypochondriac because they don't believe a 30 year old can possible be sick and in pain that much. I have told people at work and they aren't understanding either because they think I complain too much. I tell my husband that if he spent one day in my body, he'd get it. He wouldn't even be able to function. I work 2 jobs and when I collapse in bed at home I feel like he thinks I am being lazy by not cleaning and cooking. But I tell him that I don't have any energy left to do anything. It's amazing to me that I can even work 2 jobs. If I didn't have so much credit card debt, I wouldn't even have the 2nd job anymore. I also get resentful because he doesn't offer to help more or atleast take responsibility for something around the house.

As you can see, I totally understand how you feel! I don't think anyone can understand this without actually living through it.
Emily B. 30 years old, IBS dx 1996, allergies since 1997, fibro dx 2002, HBP dx 2006, UCTD dx 2007, current meds: hydrochlorothiazide 12.5 mg, singulair 10mg, zyrtec 10mg, flonase, amitryptiline 25 mg

Regular Member

Date Joined Mar 2007
Total Posts : 153
   Posted 6/2/2007 12:13 PM (GMT -6)   
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.

Chronic Fatigue 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007

Regular Member

Date Joined Oct 2003
Total Posts : 262
   Posted 6/2/2007 12:19 PM (GMT -6)   
sometimes yes and sometimes no, my family and i have been living with lupus since i was 13 (i am 25 now), my husband and i have only been together for 6 years, its crazy cuz during this flare i was more po'ed than anything that it came back, but everyone was more worried about me taking my medicine. they try to understand especially my husband, my mom has learned and knows what to ask and when to ask it, and i feel really bad for him cuz he has been wonderful through all this as usually and but up with alot of bs from me especially when i first found out it came back, but with his family, we didnt tell them, my choice, i didnt feel like having the entire chicago tri-state area knowing i was sick again.
Hugs and prayers,
diagnosed in May '95 with lupus, nephritis, hypertension,hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D

Regular Member

Date Joined Apr 2007
Total Posts : 104
   Posted 6/2/2007 1:53 PM (GMT -6)   
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.

Veteran Member

Date Joined Jul 2006
Total Posts : 831
   Posted 6/2/2007 2:05 PM (GMT -6)   
Today is a bad day, my arms feel like lead weight. But I'm going to type anyways. My middle daughter who has TM calls me evryday to check on me. My other two children at like nothing is wrong with me.

My b/f is great in his own way. My neighbor two doors down can tell me of all her ills and her husband's and son but doesn't want to listen when I tell her there is something wrong with me. But I have been here shouldre for 3 years.

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 6/4/2007 2:22 AM (GMT -6)   
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.
Dx:fibromyalgia 2002, systematic lupus 2005, psoriasis 2006, rheumetoid arthritis 2006, early sjogrens 2006, low positive anti-phospholipid antibodies/lupus anti-coglutant 2001-2004 and 2007, osteoarthritis 2005, Migraine 1994, Compression fracture 2001, Disk problems 2006, Multiple allergies 2006, Post traumatic stress disorder (PTSD) 2007, Bipolar type II 2007, possible siezures 2005, probable lupus CNS involvement 2007

Tx: plaquenil, Imuran, Enbrel, Celebrex, Tramadol, Norco, Singulair, Skelaxin, Evoxac, Clonazepam, Zonisamide, Baby Asprin, Relpax, Copper IUD

tink 2
Regular Member

Date Joined Jan 2007
Total Posts : 371
   Posted 6/4/2007 10:48 AM (GMT -6)   
I want to slap them all the time to that is why I live in Florida and they live in NJ and NY. My arms do not reach. I explain it to them as just having the flu all the time. hen I send them the one a letter to my family and friends. That one helps to  here is the web address for it.
Lupus since 2005, MCT since 2005 polymysoitis since 2005,Arthritis since2005 sjogren's syndrome since 2005, vertigo since 2006,migrains since 2006, diabetes since 2006, Depression since 2004. who would not be with all of this.
       I just try to make it threw every day as best I can.
        God please remember I am on the diet platter.
                  So many beads so little time.....
                   Have a great Lupie Day Denise 

Veteran Member

Date Joined Jan 2004
Total Posts : 4151
   Posted 6/4/2007 3:25 PM (GMT -6)   
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.
Co-Moderator ~ IBS Forum
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin 2mg/day (tapering to PRN), Miralax 17g, Supplements

Veteran Member

Date Joined Dec 2006
Total Posts : 707
   Posted 6/4/2007 5:51 PM (GMT -6)   

I'm with ya all here.  If I could have raised my arm high enough yesterday I would have liked to have "boxed" with a few of my family members as well.  I did, however, recently get my Mom and Dad and twin sister onto the "but you don't look sick" website.  They read it but not sure what they thought.  They haven't talked to me about it and I haven't asked.  My twin (whom I love more than my own life) is not sick but she is very selfish.  She is all about "am I gonna get it" or "should I be worried about myself" or "what will I do if I get it".  All very important things to consider but has she really ever once asked "how are you doing Diane" - NO she hasn't.  I think my problem is that I want to talk about how I am feeling both physically and emotionally but my family really doesn't want to listen.  I have always been the quiet one in the family and with our family all together yesterday again I was the one who stayed at the edge of everything instead of jumping into the center and I guess Mom finally did notice that I am even quieter now than I ever have been.  I'm just venting here.  I want people to know I don't feel good and why.  I want people to care enough to understand if I get crabby cause I'm in pain.  I'm not looking for sympathy or "oh poor you", just some compassion would be nice.

Okay, vent over.

Diane (ocean1)
Soft tissue joint disorder 2007 (can't spell or pronounce the name), Lupus Sept. 2006, IBS 2004, Chronic Hives 2002.
Medications:  Allegra and Zantac; Xanax PRN; Lunesta and Ultram PRN.

Regular Member

Date Joined Oct 2006
Total Posts : 281
   Posted 6/8/2007 8:29 AM (GMT -6)   
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.
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.

Regular Member

Date Joined Oct 2006
Total Posts : 281
   Posted 6/8/2007 8:32 AM (GMT -6)   
I just want to add to this post. I am sorry for all of you here who have posted about this subject. I am sorry that you all have to deal with family members who don't understand what we are going through. I am sorry if they have hurt your or broken your heart. No one deserves that, we didn't ask to get sick and to suffer. (((EVERYONE)))
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 6/8/2007 10:05 AM (GMT -6)   
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.


Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin

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