View Full Version : Lupus is Your Own Fault
12-29-2005, 09:02 PM
I thought this thread title might get some attention. Believe it or not, there are people who will allude to this. There are people that believe you get a disease by giving it power with your mind. Their are people that believe you are not being healed because you do not have faith, or are not accepting the wholeness of your being.
There are people that say your soul made an agreement before being born that you would have lupus.
If you are following victim to any of these beliefs, knock it out with a sledgehammer right now. There is no basis for any of these things. All it does is add guilt and confusion, and that is NOT something you need right now.
I think SaySuzie might have a couple words to say in this area as well.
Someone got a problem with this? Send them to me.
12-29-2005, 09:43 PM
I've actually heard that you get lupus by what environmental factors are around you or what you've eaten or what medicines you've taken. Since alot of lupus patients don't look sick, I think some of the general public try to blame what we've done that we brought this on ourselves...I only wish!
Are you in my brain? If so, get the heck out.... :evil:
I have no definitive diagnosis as of yet...won't be long I fear. I find people say stuff like, "well, it's not so bad" and "you know there are many forms of lupus and they aren't all so serious."
So...no one believes how I feel. And I am one of those lucky people that internalize and analyze. And what it does is play hell on my body. My blood pressure goes up, the tachycardia kicks in, I have panic/anxiety attacks. I literally make myself sick with worry. I feel alone.
So, if you don't mind...stay out of my brain...I can do enough damage on my own. :roll:
12-30-2005, 12:39 PM
Though I totally agree that Lupus is NO ONE'S fault, I do believe in mind over matter. I get just as frustrated as everyone else at the whole...but you don't look sick thing, but I like to put it into perspective for them, and have found that if I ask someone if I can stick a knife in their _____...whatever is feeling worse that day, that they really leave me alone.
Down with the non-believers, and I pray that they soon will find the knowledge that they need to understand!!!
12-30-2005, 01:59 PM
Oh I'm so looking forward to the dumb dumbs that I am going to have to encounter because of this. And I'm not one to keep my mouth shut either, especially when I don't feel good.
12-30-2005, 03:44 PM
I absolutely HATE that whole 'but you don't look sick' crap...So what?!! What is that suppossed to mean?! Half of the time we're on prednisone which causes weight gain so yeah we look nice and plump at times..That dosen't mean we're not suffering...Trust me, I wouldn't dare make up the type of pain I go through at times...For that matter who could make up what we go through ladies?!! No one I would say....Sorry I just had to put my two cents in...lol...Take care...
04-01-2006, 11:06 PM
I just hate it when people asks "how am I?" and honestly I don't wanna answer anymore because how do I explain to them that there are times that I feel okay and there are times that I don't... and some people find it hard to believe that I'm really sick because I don't look sick at all.
It's just sad that Lupus drastically changed my life and I used to have this self-pity notion that maybe I did something terrible in my past that I'm now paying the price. But I would rather believe that God has reasons for letting things happen and I'm not really sure why.
04-02-2006, 10:27 AM
But I would rather believe that God has reasons for letting things happen and I'm not really sure why.
A very wise woman said to me once that God only puts on us what we can handle. Therefore, I choose to believe that we Lupies, who tend to get little sympathy from the general public, are stronger than most and can handle what we have been given...albeit with some difficulty at times!
04-19-2006, 08:11 PM
I never had anyone tell me to my face that I don't look sick, although plenty of people have said it behind my back! It's not that they don't think I have the illness either, it's that they have never heard of it before, so they don't think it's a real disease and I'm just making it up. I DID have a marine who was trying to recrute me tell me that when I tried to tell him why he wouldn't want me in the marines!!!
04-24-2006, 06:57 PM
I don't want to look like I am sick. Living it out is bad enough. I do find myself getting perturbed about the times people find out I have lupus and they trot out their, "My aunt so and so died of lupus. I am so sorry!" stories. I sometimes want to say to them, "Did you really think that would help me?" Instead I say, "My grandfather had lupus and he lived well into his 80's. I hope I will have the same experience." Inside though I get afraid. I only found out two months ago I have lupus. It is too new to feel anything but somewhat overwhelmed. I hide it but once my husband and I shared it with our parents it seemed to mushroom. I wish we had hidden it sometimes.
06-06-2006, 12:06 PM
This is so common! I can't tell you how much I've heard that line or a variation of it. (Another favorite is when I say I have been in bed by 7 all week - due to severe fatigue - the reply is "It must be nice." Ha! Trade ya!!) My family has been awful about it, my sister thinking I've been exaggerating the problems, and it's ironic because she is a card carrying hypochondriac, having dragged me through every hangnail she's ever had.
I do think when people I'm fairly close to say or hint this, it's a chance to educate them. Tests and trials are, or can be, a gift to us, to give us a broader perspective in life, more compassion or whatever. The best I can do to help myself forgive people for their little digs is remind myself that 1) Before I was sick I may have thought the same thing, even if I didn't express it, and 2) Having this illness has bestowed a gift of realness and understanding that my Maker knew I needed!
Another gift is that I have fewer true friends now, but those I have are real gems among humans! They know that we all have problems, and we all get sick -- if not this year, eventually. They too are more real.
06-06-2006, 12:55 PM
Because Lupus has so many forms and because it affects each of us differently and because the symptoms are often very confusing, we seem to never be able to get a diagnosis from the first doctor's we see. Most of the time, the first doctors that we see don't even consider Lupus as a possible explanation for our many aches, pains, illnesses and symptoms (unless we have some life-threatening manifestations - such as heart, liver or kidney damage). Besides feeling extremely frustrated and wondering if we are really imagining some of their symptoms, many of us end up going from one doctor to another with the hope of finding someone - anyone - who knows what is wrong with us and how to treat it.
Far too often, doctors who do not readily recognize lupus tell us that we have a psychosomatic disorder and refer us to psychiatric therapy. There have been articles written that have claimed that our flares are brought on by us and are, therefore, psychosomatic!! We have been accused of malingering (feigning illness for attention, financial profit etc.) We have been told that it is "ALL IN OUR HEADS"
Lupus is a disease/disorder of the immune system. No one can see the immune system, nor can they see how its malfunction debilitates our bodies. People with lupus may not look sick, but we, very often, feel run down, weak, or nauseated. Our joints often hurt and we may have swollen glands. The truth is, Lupus, a debilitating disease and it is STILL a medical mystery.
I am sure that almost all of us would prefer to look sick and feel healthy, but such is not our fate. Instead, many of us look healthy and are in extreme pain, have debilitating fatigue and are suffering from damaged internal organs.
I choose to ignore those who ignorantly make those statments to me. Talk about fatigue...I am soooo tired of having to respond, so I just say nothing at all.
Having Lupus and losing my daughter to this disease has, like Ihate2shave has said, made me re-evaluate who my true friends are and what is truly important in my life. So, I live a very secluded kind of life, with a very few GOOD friends and I have withdrawn from many things that are just not important to me any longer.
I guess, to some extent, having Lupus has made us all different people. Fortunately, I think that is a good thing for us LUPIES!
Peace and Blessings
06-06-2006, 01:44 PM
I would have to agree that God only gives us what we can handle. We do not bring this disease on ourselves. All the ignorance of other individuals that do not live with our disease only makes us stronger. Our daily suffering will not go unnoticed in the end. We live with the unknowns of this disease everyday and the best thing we can do is take what we know and have learned and teach others.