View Full Version : Telling Family / Friends of your condition

08-30-2009, 03:53 PM
Hi All,

I am curious to learn about some of your experiences when telling Friends and Family. I am not yet diagnosed but I have one doctor who believes it is Lupus and is currently doing some testing. I have begun telling my family and friends and just curious how that all went for you.

I am also curious about telling my employer. Is this recommended or not?

I have begun telling my family and friends and I get responses or replies like.. "I know someone who has that and they are just fine". "They get around perfectly fine" ... "What is that disease you think you have again".

I'm just curious what your experience has been and most importantly I am trying to decide whether or not to tell my employer or friends at work.


08-30-2009, 04:17 PM
I found it really hard to explain it to my friends/family. Well, mostly friends. They just really didn't understand it when I would explain it to them. Lupus is a tough thing to explain to people who don't have it. I ended up going on google and looking for ways to communicate what its like and found this: The Spoon Theory (http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf). I just got the people I wanted to understand my condition to read it, and they seemed to have a better understanding. =]

As for the employer thing, I don't know what to tell you for that. It may be a good idea just to let them know if you do get diagnosed with it.

08-30-2009, 04:51 PM
I briefly mention it sometimes in passing in a conversation and if that person was curious, I would go on to tell them a wee bit more. Haven't used the spoon theory yet as I forgot it existed (silly brain of mine). But to most, I don't bother. As for employers, I can't say anything as I'm only a student. But in terms of the uni, letting them know has been helpful and I found them to be supportive.

08-30-2009, 04:52 PM
hi sirlupalot,

thanks for the great question....this will be an interesting series of responses.

first, i don't know your employment situation, but my initial thought is that you should wait until you feel it is interfering with your work, and for sure after the diagnosis.

also, now is the time for you to check on your life insurance, long-term disability insurance, and even medical insurance....after a lupus diagnosis, all of these doors will close...you will not be able to get new insurance, or even increase the amount that you presently have....so, take care of this business if you have not done so.

with the economy the way it is, i would not want you to give anyone a reason to question your abilities...so keep this under your hat for a while.

friends and family....mine still don't understand....they try, and they are very caring and sympathetic, but they don't really understand. I also heard the same response, and yes, they might know someone, but unless they interact with that person every day, then they do not have a clue about whether that person is "doing just fine." this is their limited knowledge about lupus, and their discomfort with discussing the illness with you....give everyone time, let them know what you are feeling, and they will reach a certain level of understanding.

I took my kids with me to my drs. appointments for a while, and i also had them to browse around this forum. both of which just scared them, and so they had to quit reading....but, they are here for me, and that is what is important.

good luck....

08-30-2009, 06:09 PM
Yes I agree with Mountain, you should not tell your employer until it is interfering with your job and when you do make sure you have medical documentation, whether it's that your seeing a doctor for a condition or not, does not necessary need to be a diagnosis. I have several CYA doctor's letters in my possession in case it ever becomes a situation. I have on from my Sleep doc saying I may fall asleep during the day (since I've been on medication not an issue, but have the CYA letter anyway) And I have all my notes from my appointments. Due to the medical privacy laws they don't have a right to ask you and you are not obligated to give medical information unless you feel it is affecting your ability to work and then you talk to your boss and submit documents if you want.

As for family and friends. Let them know about your symptoms and what it could mean. I have told my friends and family and I don't have an official Lupus diagnosis yet, just Sgjorgen's syndrome and the hellish fatigue. :tongue2: The are supportive and it's nice to know they care but they respect my privac and don't push and ask constantly but also understand when I'm not able to attend something.

08-30-2009, 11:51 PM
Thanks for all the great comments / suggestions. I have found some videos on youtube also that I have forwarded to a couple of people to help them understand.

MoutainDreamer .. THANKS ... I am trying to up my life Insurance right now .. and I've tried to get more long term disability coverage but can't seem to find a provider. Anyone have any suggestions?

I have LTD right now through my employer but don't know what will happen if I lose my job. Can I keep that coverage if I don't keep the health insurance as I won't be able to afford both.

08-31-2009, 06:13 AM
good morning sirlupalot,

i certainly am not an expert in employment law, but i would think that if you have long term disabiity and you loose your job because of your medical situation, then your ltd would start to pay for a period of time. My daughter was no longer able to do her job after her battle with breast cancer, and her ltd is paying for two years....this is giving her the time to get a higher education degree, so that she can re-enter the work force in an area where she can continue to work.

If you took this route, then this would give you time to seek disability income through the social security program.

Hopefully, you will never have to call these options....when i was first diagnosed, i was afraid that i would have to move into an assisted living facility, quit driving, quit working, etc....well, so far i am doing ok, still working (part time), and still living in my home (brought my son home to help me). So, just do all of the research that you can and educate yourself on your options, but try not to worry....hopefully your life after diagnosis will not change too drastically.

08-31-2009, 06:24 PM
Hi !
Well for me, I didn't really have to tell my family, my mom did that for me kinda. Everybody was just concerned for my well being i guess you could say. Telling my friends was pretty easy too, because i knew that they would be there for me! And trust me, as soon as i told them, they were in the car on the way to the hospital. But i think i scared them more, because of WHY i was in the hospital, (i had fluid around my heart and lungs and an enlarged liver)

Everybody is very understanding, especially if there is a situation when i cannot hang out because i don't feel good or because i have a doctors appointment. And they are always willing to help.

Now, i was kinda nervous to tell my boss at work, because i work at the Pittsburgh Zoo, and everything is outside, and i wasn't sure if i would be effected by the sun at all (thank goodness i'm not!) but she was actually really understanding about everything, and makes sure that I am scheduled on things like the tram or train, where you're not in DIRECT sun all day long.

everybody in my life is just very supportive and i love it so much! <3 :yes:

08-31-2009, 06:57 PM
Hi sirlupallot,

I found it and find it hard to explain to people. So for the most part I dont tell people I have lupus unless I get sick than I may mention it. Telling your employer?? Honestly it depends on what line of work you do? Me, personally didnt tell my employer at all because I was afraid of losing my job which later I realized was silly. But my main reason for not wanting to tell my co-workers and employer is because I dont want a pity party, I dont know thATS just me.


08-31-2009, 08:28 PM

I haven't told most of my family and friends too much simply because my family is a pack of worry warts and tend to get very Sarah Burnheart on me with the littlest bad news (like I have a headache will suddenly become maybe I have brain cancer) & that craziness drives me nuts! They know that I suspect Lupus and when they ask me questions I answer them, for the most part. I don't get into details with coworkers - just tell them I had a procedure or a condition or have been feeling a little unwell. I stick to those three answers when they ask because I don't think it's their business and because I don't want false sympathy or pity. I am honest with my boss (who happens to be my age and I feel more able to relate to me) about having to go for tests, doc visits, procedures, etc. I haven't told him the details of what the dianosis (or lack there of) is because, well, it's just not his business as long as it's not interfering with my work abilities.

I am going to send you a PM too so take a look on your profile.


09-01-2009, 09:06 AM
The lupus foundation has some great resources about lupus that could be helpful for your family. Lupus is a hard disease to understand. One great way that I learned to explain lupus is one the spoon therory and two about the markers on our cells:

With a normal healthy body are cells look at each other and see a mirrored image (our cells have markers on them example 12,3,6,9 like a clock). With lupus our normal cells look at each other but one of the cells' markers have rotated but is still a health cell. So when they look at each other instead of seeing that mirrored image they see a foreign image and then our own healthy cells attack each other therefore damaging our organs. This in turn causes all our problems.

As for your employer I would definately wait until you have a diagnosis and it is causing you problems at work. I never tell an employer when hired that I have lupus. I do usually divuldge that info after being hired though. But I also work in a hospital where it is understood.

Good luck with your diagnosis and keep us posted. And welcome to our family!:yes:

09-10-2009, 10:47 AM
i echo chriss's comments... i've told family and friends that i have lupus, but i don't really talk about it much.. basically, i don't think people want to hear about my problems and once you start talking about it, it's hard to shut up.. plus I don't really want to dwell on it or let it define me... most people don't understand autoimmune disease anyway.. it's the invisible disease..

i've told NO ONE at work.. if you tell one person, then you may as well post it on the bulletin board.. everyone will know.. don't want the pity party plus I don't want the fact that I have this condition to limit my potential.. if others know, then they may subconciously or even conciously decide that i'm not suitable for a job or promotion because of this disease.. and i don't want that.. at least not yet.. someday i'll probably be forced to tell, OR maybe not...

09-10-2009, 02:52 PM
BOy are YOU right about THAT Mortified! IT IS the INVISIBLE disease huh! Too many people (drs as well!) that means its "in your head". They DONT understand unless they SEE it unfortunately. Oh well, screw them , WE ALL HAVE EACH OTHER!!!! WE ALL UNDERSTAND!!!!! WOO HOO to that!!!!