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Discussion Starter · #1 ·
Hello,

Just a thing that bothered me the other day...I was on Facebook and put a Lupus related status update on, and within a few days some people had got back to me commenting on it. They all said pretty much the same thing...that they had a friend who had lupus who cured themselves within a year, and would I like to meet them to know how they did it?

I know they are only trying to help, but it does frustrate me when this happens...it is like they are saying that it is my own fault for having this condition, and that if I really tried hard enough I could make it go away! Don't they even stop to think why saying that might be a bad thing? And that if getting rid of Lupus was that easy, doctors would be prescribing the method? I ended up in tears about it...has anyone else had a friend like this..."buy this supplement and you can be cured" or "we know the secret your doctors don't tell you!" Like it is a big conspiracy by the medical world.

Sorry, rant over....sigh.
 

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Hi Roseanne, :wavey:

I'm assuming that these are people that you are not linked to as friends. My Facebook site is private so that only people I choose to link to can view it, otherwise you can get some unwanted attention.

You can apply the same permissions to all of the social networking sites.

I hope that helps.

Hugz,

Pam xxx
 

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Discussion Starter · #3 ·
No, actually it is real friends of mine - people who I don't know quite as well as my immediate circle - friends of my husband's or ones I haven't seen in a while! These are people who know me, but I hadn't told about Lupus yet...now I know why telling people can sometimes be more trouble than its worth!
 

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Roseanne,

To me it is highly suspicious that more than one person has one friend with Lupus that has been cured within one year. Sounds like a really bad joke at your expense - how cruel.

I hope not, but if so I think I would have strong words with them! What they have said does NOT help at all!!!


Take care and stay strong!

Lesley
 

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Hi Roseanne

Im sorry to hear how your friends upset you like that. It must have been very hard to take, especially when one goes through the anxst of 'exposing' oneself like that and opening up to others. Unfortunately its a risk and sometimes risks backfire.

As long as there are people out there who prey on vulnerable, sick individuals in order to ply their 'miracle' cures to make money, there will always be people who will believe it. Thats how they make their money. There are heaps of miracle cure scams out there and some people just tend to take things like that at face value. I think of people like that as a flock of sheep - no individualism and no free thinking - just a herd of people following blindly along. Thats their disease.... at least you havent got that ;)

Having said that, avoiding these people is easier said than done, especially as they are within a relatively close circle of friends. If I can give you a tip ask them if they really would like to help you can they link you to the scientific evidence that shows how these miracle cures work. What you are looking for are facts - studies that show their claims are true - not anecdotal stories of any one individual who is making such a claim. We can all claim anything we want - its the proof that matters. I bet that will stop them in their tracks and shut them up.

There is no current cure for Lupus. If there was, the medical world would be shouting it from the rooftops. You can absolutely believe that. People can go into medicated or spontaneous remission - thats a whole different story. I know of no miracle cure that can change or eliminate the auto-antibodies in my system - do they?

Of course the other thing to do is to absolutely ignore them. Wipe your tears, put them out of your mind and plough ahead. Onwards and upwards. There will always be people out there who, either intentionally or well meaning, will say the wrong thing at the wrong time. Chalk it up to experience. If they really want to help, direct them to some reputable sites which explain thoroughly what Lupus is about. After they have spent the next couple of months reading - they can come back and talk to you....

And yes...I have had colleagues telling me to try this and that supplement and that it will definitely make me feel 100% better. I was angry about it at first - now I just politely ask them the name of the product and tell them I need to check with my specialist to see if its contra indicated with my disease or treatment. They usually dont bother after that....Im pretty sure one or two of them think I dont want to help myself but I dont give a fig about them. The majority of people I know just do their best to be supportive when they need to. Thats all one can ask.

Hang in there
Hugs
Joan:rose:
 

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Hi Roseanne,
I don't have any answer, just sympathy at how these people make you feel minimised. Fortunately, it hasn't happened to me. (I am a bit fierce). I can imagine how you must feel though and it stinks!
x Lola
 

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Hello I do understand just what you are saying.
We have had friends, family and alot of others who have sent us some stuff that is unreal.
Some of them swear that they know this person or that person that has been cured.
Always with some Mirracle Cure that they just happen to have a printed flyer for and many times that they just happen to be able to order for us.

Some have also passed on stuff that says that it is caused by this Diet Drink or some other item.

We know that most of them mean well and that many times they really believe what they are saying.
But no matter what is said you can find someone else who will belive it and someone else who will swear to it.

Give these same people two years and they will have something else they are swearing by.

Truth of the matter is that no one knows what causes Lupus. They have yet to find a cure.
Some people have had help by some things while it fails to help others.
Some have tried something and had some luck while it fails to help others.
No one has a cut a dry cure for lupus and no one can tell you what is best for you.
In the end all you can do is work with your doctors and do what you need to try and control it.
Your Doctor knows Medicine and can help you but you know your condition better then anyone and many times can figure out better then anyone else what is good for you and what is hurting you.
 

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Good rant! What gets me is the utter confidence of the ignorant. They *know*. I should share some of their "wisdom". Did you know that Lupus is caused by drinking diet sodas? Eating red meat? Taking vitamin pills? Drinking milk? Eating seafood? I can't even remember all the idiotic things apart from the assumption that somehow we give ourselves Lupus by what we do or eat. "It's your own d*mn fault that you have Lupus!" None of these helpful folk has any idea he or she is implying this but there it sits. I have been known to fail in being my charming charitable self in such situations.
Does this qualify as a rant too!
Douglas+
 

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i also know people who CAN CURE ME i have been told to stop wearing lipstick because that's what causes lupus.Few months later she told me to not drink alcohol or diet coke(i think sh really wanted me miserable because all i drink is vodka and diet coke notoften of course).Then it went to red meat and so on.I used to get upset but one day i had enough and i asked her to send me a bill she was puzzled and i told her i have been paying doctors for years and i'm still sick when i could have paid her to be my carer because she seems to know EVERYTHING about lupus more than my doctors.She got the point and stopped.
my sister in law also thinks i could do more to help myself she says of course your in a flare up you are going for walks and eating too much fruit:rotfl:
poor things if only it was that simple.
take care
jackie
 

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Hi roseanne

I'm so sorry your friends have upset you :sad: people can be so thoughtless!I hope in their ignorance they were just trying to help you.That's what I try to convince myself!It stops me from becoming bitter :lol:


I was in a taxi a few days ago & the nosey taxi driver trying to find out why I was at the hospital so I told him I had lupus (I'm trying to bring about more lupus awareness :wink2: ) & he went on to tell me that he knew someone who had lupus..& yes you've guessed it,they died at the young age of 41!very sad I know but not what you want to hear when you're being brave by being more open about your illness!

anyway I'm sorry I've gone off in another direction :rolleyes:
I hope you are ok now roseanne & I know it's hard,especially when they are your friends but try to take it with a pinch of salt..we aren't to blame for anything we have done & if there is a miracle core out there I hope we'll be the first to know!!:)

take good care
:hug: karen x
 

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Hi Roseanne,
I am sure sorry about yourr friends. Yes, I have been getting advice on how to "cure" my lupus and other auto immune disorders for a long time and it still gets to me. My feelings always get hurt too. This disease is truly hard enough to live with then we have all these people telling us one thing or another that we should be doing and so on and so forth.

My stupid question is Facebook like Myspace? I am not a computer person and do not get around on it like I should. My dd has a myspace page that just has who she lets on it. I did make sure of that since I heard about all the scary stuff that can happen on those sites.


I hope you that your friends can support you and be there for you.

You know you always have friends and support here:)


Hugs,
Becca
 
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