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Moxie
01-17-2008, 10:39 AM
How many here have encountered family, friends and unenlightened docs poo-pooing the autoimmune/connective tissue disorder range of manifestations?

In plain speak, isn't it frustrating to deal with others who think we are hypochondriacs, anti-social or just plain lazy and crazy?

My GP and rheumy recognized my symptoms, thank goodness, and are treating my sympoms. The rest of the world hasn't a clue.

I have lalready lost both of my hips to AVN. Additionally, I will be having the first of both knees replaced in three months. My ortho still doesn't get the joint/lupus connection and thinks when he once again fixes me, I'll be as good as new.

Anyone else have this problem?

Suzique
01-17-2008, 11:40 AM
Gosh, yes. My PCP had to literally scare me half to death to get me to quit working - by telling me that I was spiraling down from the stress of my job. Thank goodness she is one of the good docs. But other people, including family, often remark that they know people with Lupus, and they are still working. As if my being on disability is undeserved or fake. I feel so unsupported at times, because of the "You don't look sick" thing (thanks for the advice, Karen, excellent site). Even my husband, who has really been a dear through the years of sickness, seems put out with me sometimes, when I can't drag myself up to "do" something. Honestly, that is why I am so excited about this site - this is the first time in years that I feel really understood. I read the things written by the others and say, "Yeah - I KNOW!" At least you know you can always find a compassionate, understanding "ear" here. :wink:

luvwine2007
01-17-2008, 02:20 PM
Yes, I hear you. I've been to so many drs over the past few years, I finally stopped going. No one would listen to me. My husband, bless his heart, convinced me to try again and thankfully I did....I found a great rheumy. I still sometimes feel like "it's all in my head" even though I don't think it is. Not necessarily because other people make me feel like that. I've told very few people about my condition, and I don't tell them how I'm feeling either. I've just learned to live with it. But, now I'm getting the help I need. I'm praying that all goes well with my ob/gyn appt on Monday and get the help I need there too!!

Moxie
01-17-2008, 07:18 PM
Looked at my original post and realized my brain was not fully engaged with my typing hands --- happens a lot lately. So sorry.

Work was my life. I, too, had to "retire" early due to extreme emotional and physical stress. As an industrial engineer, long hours in hostile, chemical filled environments prompted my docs to put the kabosh on continuing what I was doing. Being female, it was necessary to work harder and faster in order to compete with the guys for the same benefits. The fatigue was bigger than I realized.

So, I bit the bullet, swallowed my pride, reduced my world and took a no-stress menial job just to cover expenses. Now, my OS insists that I completely retire due to joint deteriorization. He says that I will lose more than my hips and knees if I don't knock it off. Bummer.

This is where the family and friends come in with their 'lazy' talk. Why am I wasting my education? Why have I given up the money? When will I come to my senses? I don't feel compelled to answer. What do you say?

This is some sort of crazy club, huh?

lilbitt113
01-18-2008, 02:18 PM
so many thoughts of mine are right here on this page. i'm just 23 and trying to get long term disability. i've been at it for about 4 months and i think i have a lot longer to go. sometimes i have this little nagging thought that maybe i'm just lazy (because as a teenager, i know i was). but then i realize that when i complete simple things like doing the dishes and i am so proud of myself, i know its not lazy, its lupus. i went to a christmas party over the holidays that i have been attending for about 10-12 years, and my mom had already filled everyone in that i was sick, but yet i still got people with the "you don't look sick". well gee... thanks? i never know how to respond. what do you say to that? "well i know, but i really am". sometimes i just want to pull the person close and whisper, "its cause i'm not. i'm faking it"... is that what they were looking for? to out me? silly people. i just cant let them get to me. and neither should you.

joakris
01-18-2008, 05:20 PM
I completley understand..... I wish I didnt look sick! I used to be so on top of my looks my hair was always done my nails where freashly manacuired and my clothes were clean and put away, dishes done and a clean house! not to mention my work work work work I used to get so much done!
I have been sick since august and just today had an echocardigram done because they still dont know what the heck is wrong with me... they keep throwing out these big diganoses like lupus, luekmia, possibly cancer?

yeah so the whole I dont look sick thing urrrrgh dont people get that some times when you have been sick for so long you just try and pretend to not "look " sick.... at least I know I feel better when I put a little make up on and do my now short brittle hair and try and make it look good! =)

what ever it takes to maintain a smile on my face... ( dont get me wrong most days i dont have the energy to put make up on) but hey one day at a time :o

sick n tired
01-19-2008, 12:28 AM
I quite agree with you all.

I also have family and "friends" who tell me what I should be doing, or working or feeling. I also have "well-meaning- irritating people" telling me that they. or their great aunt martha, or their friend of a friends cousin twice removed on their father's side, knows what the cure for me is. I have decided that in the future I will give them my rheumy's number and tell them that he is has been trying to find the cure and I am sure that he will be pleased when they tell him what that cure is.

Sorry for the rant, but these people are getting irritated with me that I am wanting to pass their amazing cures by the doc before I try them.

Also, what do you all answer to the question."How are you?" Now I know that the correct answer to that question is, "fine". But I find myself in a delimna, because I don't feel fine, but I don't want to elaborate why not.

Suzique
01-19-2008, 10:43 AM
I wish I could say people say that to me. They don't anymore, unfortunately, as I look pretty awful - my hair is lank, and I'm too tired to try and do anything with it anymore, dark circles under my eyes, weight gain that I can't shake, big "moon" face, don't even get me started on my complexion, that used to be so smooth and clear! Oh, well - sorry, I just had to rant a bit. I am particularly sensitive to my appearance, as my husband is MUCH younger than me, and I wonder how in the world he can still love me. I looked completely different 5 years ago - I have aged 20 years in 5.
As to the question, "How are you?" That is a conversational gambit that many people ask instinctively, not expecting a "real" answer, according to the advice columnist that I read often in the newspaper. I agree. The average person who asks that just expects, "fine", "pretty good", or something of the like and thinks nothing, really, of the answer. If the question is posed by a person dear to you, be more honest: "actually, having a rather bad week - I've had a hard time even getting up." Or something like that. I learned to do this, because always putting a brave face on things (the way I was taught to behave) was getting me absolutely no support or understanding. I am not saying that you have to tell your problems to everyone. But those close to you SHOULD know something of what you are going through. Otherwise, how can they support you? Maybe they cannot do anything to physically help you, but when they hear of your trouble, they just might remember to say a special prayer for you - and nothing, really, could help you more!
Sorry to ramble, guys. Woke up really early this morning in so much pain I had to get up to keep from disturbing my hubby's rest. I'm tired and grumpy, and guess I needed to grumble a little. Thanks for being there.

Susan

luvwine2007
01-19-2008, 07:51 PM
Sorry you had a bad day :( I've had a rough couple of days too, just when I thought the Plaquenil was starting to work. I think now I was just feeling good and over did it :( I couldn't really move my hands yesterday and they were hurting so bad this morning :( :(

mnjodette
01-20-2008, 06:48 PM
Susan, your post makes a lot of sense - share your REAL feelings with those close to you so they know to support you. That's very wise. I, too, was taught to put a brave face on everything. I have some very dear friends and colleagues who will press me when I'd answer "oh, I'm doing fine" and make me tell them how I really am - or sometime sthey ask me if I'd rather not talk about it. Very sensitive - I feel lucky to have them.

ldrinker
01-23-2008, 07:31 PM
I know this is a common experience for lupus patients, but I can't tell you how refreshing it is to be able to vent about this. I truly don't think there's one person in my "real" life that understands what it feels like to be me everyday. I'm 27 and desperately trying to live a "normal" life as much as possible, however far too often these days this disease does not agree with my plan of attack. Recently I received a nasty email from a so-called friend of mine who is well aware of my condition complaining that I always cancel plans with her. I try my best NOT to make definite social plans because I know how unpredictable lupus can be and that I will feel fine in the morning but won't be able to get out of bed by 5:00PM. I don't really know what the answers are - I try to be as honest as I can be with people that I trust and with everyone else, I really try not to care because life is too short. I try not to "sweat the small stuff".

Suzique
01-23-2008, 09:38 PM
Idrinker,
Do I understand that frustration: plans changing. If I want to do any sort of activity in the evening, I have to spend the day in bed resting (saving all of my "spoons" for the evening). I rarely make an evening plan anymore, but then, I am 49, married, with children. haha
I know you are struggling with trying to get people to understand. When I first came here (a big week ago!), I learned about another site called "but you don't look sick" (type it with no spaces and no apostrophe), and the explanation called "the spoon theory" on that site. It is an awesome way to describe the limitations of a person with Lupus. Perhaps you could find it and send the link to your friend (I don't think we are allowed to send links on this site). She obviously does not understand what IT is doing to you.
Hope we are able to help you vent and keep your chin up!

Susan