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Discussion Starter #1
OK so my docs finally confirmed today that i do have lupus! yay!

Now all i need is to figure out how to tell my parents that I do have lupus they know about all my problems after all they bear the brunt of most of my mood swings & they can physically see the weight loss & rashes but I just dont know how to tell them that I have had my diagnosis
Any help guys?
 

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Hello Parksey :)
These are just some initial considerations
Do you live with them or have close regular contacts?
First you have to work out exactly what there is to tell them based on what they already might know about the likelihood of you having lupus and what they might know or notions they have about lupus. Have you been keeping them in touch with all the investiagtions you have been having done?
As you know lupus has many shapes and forms. Have you had full tests including urine ?

I think you need to have some reassurance for them and give them confidence - hopefully! and know what meds you are going to be taking.

Then I guess that your approach depends on their personalities and how they tend to react to problematical events.

Obviously they are already concerned about you and will no doubt have mixed emotions, relief that you know what you are dealing with but worry about the future. An idea of the role you want them to play would help too. Often people need to know that you will keep them informed of how things are going and then told not to fuss and not to blame themselves for you having it or not being diagnosed sooner, no blame games because it serves no purpose.
You have done a great job getting the diagnosis in the face of medical obstreperousness so they should be really proud of you for being so determined.
Lots to think about for sure. You should also consider what you are going to say to anybody else who needs to know in your circle. The least said the better as a rule of thumb. People tend to fixate on it or sort of hold it against you and constantly being asked how you, are can be very irritating Lupus doesn't define you as a person and there's widespread ignorance about what it is. Few people are really interested or know enough to be constructively supportive

All the best !
Clare
 

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Discussion Starter #3
Thanks for the advice,

I dont live with them, as soon as I turned 18 I moved out into my own place & although it is only 10 miles away from where they live we never really see each other or talk that often, mainly because of my work, doc appts etc so I never really had much time, but I dont need to worry about work anymore because as soon as i found out my results i went & quit because i cant be doing with driving 3hr round trip to visit a customer espec if its on a bad day & the 15hr days are killers!

Im going to wait until theyre back in the country as they are currently on holiday in France, then im just going to sit down & explain whats been going on properly over the last 3 yrs seeing as I have been extremely scarce with exact details.

As for the other people I know exactly what you mean about the least said the better, I told my ex-boss now & all he had to say was "you dont look ill" which tbh I was kinda expectin & didnt surprise me but as for my friends they already know they all mean the world to me & have been my rock & many of them did research into it before me & are always up for a gd night in if im not in the mood to go out!

I cant beleive the amount of information & help on this forum & nice to be able to see that your not the only one going through some of the problems!

Well my replies more like an essay lol sorry!

Much appreciated EVERYONE!!
 

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Hi again,

Actually I really have nothing to add to what Clare has said! Just wanted to say that I fully agree :)

Katharine
 

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Yep yes siree Im with Claire as well.

I will add that in my humble opinion .......
Knowing your stuff so to speak helps to straighten any conscious fears or subconscious fears and/or pre conceptions friends ,family, or indeed the general public may have about the disease.

If your confident about your facts and even the unknowns it helps.
Quite simply I am an advocate of the truth is more liberating than denial.

My mum will always be a person who despite overcoming huge hurdles in her life is very much the advocate of denial.
I can see sometimes when I try to reassure her that I am giving her too much information.
Perhaps I should wait to be asked a direct question first, but I talk a lot so that takes a great deal of self discipline!!:p.

There is also a saying I think appllies to giving away information that is very dear to your heart or can make you feel vunerable...'Pearls before swine'.
Done get me wrong im not calling people pigs but I think the analogy is clear in respect to giving over something that is not appreciated or taken on board or perhaps respected.

Then there are those to quote Douglas I believe if memory ( sorry Douglas being a member on here.....
that you need to develop a thicker skin towards
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(sorry loose translation and I hope it was Douglas that said it!!??.

There are people who really are not interested or dont want to know and those that pretend and are eventually outed.

Then there are those who get bored with it..

Hope Ive covered all of my humble opinion!!..

Good luck ,,,Ithink we work things out as we go along. Huge learning curve..

See I told you I talk a lot:lol:

Nicky
 
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