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Hi there! My name is Tiffany and I was diagnosed with Lupus a few months ago. I am still trying to get used to the idea. I am curious about everyone deals with this. Do you tell your friends and family or is it better to not involve them?
 

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Hello and welcome :)

I think everyone deals with having lupus differently and some may "tell" everyone while others keep it to themselves.

Personally I only tell close family and friends as many people have never heard of lupus and as we "look" good most of the time people tend to think it's an imaginary disease that we've cooked up. If they want to have that view I'd rather they kept it to themselves! :lol:

I have a very supportive family but still come here a lot to "unburden" things once in a while as it eases the load on them.

Other than that I think that one of the most important things in dealing with lupus is to take things one day at a a time. Some days may seem bad and depressing but others will be much brighter.

Bye for now,
Katharine
 

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Hi Tiffany,

I am sorry for what brings you here but glad you found this site. I hope you enjoy it here as much as I do. You will get support and knowledge from a great group of people here who I have come to call extended family.:lol:

If you don't mind tell us more about yourself. What were your symptoms before you were diagnosed and what led to your diagnosis? I hope you did not have to wait years to finally get some answers. What medicines do you take and do you feel like your Lupus is well controlled?

It is a personal choice when it comes to telling family and friends. Like Katharine I really do not discuss it much however close friends and family do know. Lupus really is not well known so you chance having to get into a big dissertation about the whos, whats, wheres, whens and why to this disease.

I used to carry the diagnosis of Multiple Sclerosis and found people were too busy having a pity party for me, something I am not interested in at all so I learned to keep my mouth shut and say nothing. I did not want anyone to feel sorry for me!!!

I hope your Lupus is kind to you and hope to get to know you better. Feel free to join us in the chat room sometime. Sometimes we have a lot of fun in there. Take good care of yourself.:wink2::wink2::wink2:
 

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Hi Tiffany and welcome

I concur with the views of others. In general it is not helpful to tell anyone other than those you live with. Whether or not people actually know what lupus is, the knowledge usually colours the way in which you are perceived and/or the way in which you think you are being perceived. Either way, I don't like the feeling that I have been reclassified into a subset of people labelled "vulnerable" - to be helped / pitied /......... whatever.

Take care

Merle
 

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Hi there! Well, i don't have to tell anyone....my mom does that for me. she could go to the corner store for a gallon of milk and everyone in the store will know about me before it's her turn to pay! It doesn't bother me unless i'm right there. That's when i will tell her..."Ugh, No". in the end, you will know who needs to know and who doesn't.
 

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Hi and a big welcome, at first no i told nobody only my family, but as i worked then got sick, and admitted into hospital,

and was off work, word gets around, then after 11months off then back to work then 14 months back work then finished ppl want to know what wrong, i tell them, if they dont understand there problem, i dont have one now

nice to see you hear, sorry how you got here, ;) like the rest of us hey hun, needing much help and support ,hang in there


take care Lin xx
 

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Hi Tiffany and welcome.:welcome:
Being first diagnosed is a whirl wind of emotions. The first few months I told myself the doctor is wrong when they run more tests it will show I don't have lupus. That theory didn't pan out though.

I told my family that I had SLE, they understand about it, because my brother was diagnosed a few years earlier with SLE.

I don't go around telling people that I have it. Although I think everyone knows that I do. I live in a small community and the news travels fast.:rolleyes:

Dealing with lupus I take it one day at a time.

Learning to listen to your body and another great way to deal with lupus. When it says it has had enough, you need to go take a break. Pushing threw the fatigue will only result in more pain and fatigue.

Have a look around the site and post with questions that you might have.

Love,
Lyn
 

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Hi and welcome to the board.
As for telling others what I have or not, it is on a need to know basis. I don't hide it, but don't go around advertising it either. Each of us will find a level of sharing that is comfortable. There isn't a "right or wrong" level of sharing. Simply what works for you. I don't hide anything from doctors, they need to know everything.
Sally
 

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Hiya. I too would quite openly talk about my diagnosis if it was in the right context. Most things in life people do not understand unless it has happened to them. Losing a child to cot death taught me that... oh the ignorant comments.... so I wouldn't expect anybody to be wise about an illness they have not experienced!!.... don't expect too much and you won't be too disappointed when they are insensitive and ignorant!:(... don't I sound cynical:)
Claire XX
 

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ambugirl;558996 said:
Hi there! My name is Tiffany and I was diagnosed with Lupus a few months ago. I am still trying to get used to the idea. I am curious about everyone deals with this. Do you tell your friends and family or is it better to not involve them?

Hi mate how are you.?
ive had lupus for 12yrs ( august) and ive had 3 blood clots..1 in right leg ( behind knee)--1998
and 2 in left lung in 2002
ive had 3 normal/healthy pregnancys and im on warfrin now till im 99.5yrs
i find its helpful to tell your family and friends about the condition ..so they can understand what your going throu.. and yes its like a invisiable disease..u look perfectly healthy on the outside but its a different story on the inside!
if u have msn u can add me
[email protected]
keep safe
nayZ
 
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