Re: Wanting to say hello ....

I can relate to your friend.  A lot of people respond the same way you
initially did, but the fact that it really did weigh on your mind and
that you've taken it upon yourself to become emotionally invested means
a lot.

I have told several friends that I have Lupus and gotten the most
non-concerned and nonchalant responses enough times that I just don't
want to tell anyone anymore because the general impression I get is
that nobody really understands or cares what I have, and they don't
really seem that interested in how I feel or what I'm going through.
That's a hard thing for me tod admit, but it's true.  I'm an upbeat,
positive person, but if I look at things as they really are, my closest
friends don't understand my struggles and have shown little interest in
trying to relate or learn about lupus.

It's priceless and precious for the few people who do try.  The two
people who have shown the most interest and concern in my life are two
people I wouldn't have expected...my ex-husband, and an old
acquaintance from my freshman year of college.

I'd say this to people who have been told by someone they care for that
they have Lupus:  It's okay that you don't know everything about it,
it's okay to show concern, it's okay to ask questions such as, "how
does it make you feel?" and say things like, "I'm so sorry you're going
through this."  And lastly, don't do what one co-worker did to me...he
said, "Oh My!  My Aunt had lupus and she died!"

People have their well-intentioned reasons for not asking
questions...just as we "lupies" have our reasons for not making a big
deal out of it.  It's a big deal to us, but we don't want to be drama
queens or seem like we're bidding for sympathy.  I do have to say that
while I detest having people feel sorry for me, it means the world when
they try to understand and relate and just express that I'm on their
mind.  Also, I enjoy answering questions because so many people know so
little about what I am actually going through, and it gives me the
opportunity to fill in the blanks and keep them from jumping to
conclusions.

Thanks on behalf of your friend and all of us Lupies who could use more
friends who are as involved as you.

Michelle




Random Fluke wrote:
> Hello folks,
>
> I wanted to say hello to everyone here. I've browsed through many of
> the posts and intend to take more time to read them all. I've been a
> long time user of usenet, but until a few months ago I spent most of
> my time in the binary groups. I'm a male from the midwest, about to
> hit my 40s, and like most people I was until two weeks ago one of
> those who would say "what?" if someone had mentioned Lupus. To try and
> keep the story short (as if that were possible for me) I recently
> visited an old love of mine who is most decidedly the one, the one
> love that gets indelibly stamped on your soul. It was nearly 10 years
> ago when I met her and the memories of her and her two wonderful sons
> are my fondest and dearest to my heart. Our relationship was rocky,
> never worked itself out, and although I could point to several things
> as being the problem, I think ultimately it's simply that she never
> felt as deeply for me although she herself thinks about me over the
> years.
>
> During my visit she informed me that she has Lupus, and in thinking I
> was doing the right thing I didn't ask much about it. She told me very
> little and what little she told me didn't make it sound very serious.
> I guess I felt that if she wanted to talk to me about it she would. I
> realize now what an asinine thing that was to do, not that I should
> have pried anything out of her, but I probably appeared as though I
> wasn't concerned. The truth is it was on my mind the whole time I was
> there. I tried to find the time or way to sneak on her computer and
> learn more about it but hadn't found the chance. I'm fairly sure but
> not 100% that it's SLE. It wasn't until I got home and started by
> reading materials online that I began to understand. I immediately
> checked the library and have just checked out The Lupus Book and
> tonight I will begin to read. I used to be an avid reader of books but
> find I need training wheels for a while, it's hard to concentrate and
> absorb at the moment.
>
> What I have learned so far is breaking my heart when I think of the
> possibilities of how her quality of life will be, and how this will
> affect her sons life as well. Fortunately she has always remained
> close to her mother in where she resides as well as close in
> relationship. I am able to talk to her mother and will do so soon, and
> when I know I have the full picture I'm going to let her know what I
> have learned and how I feel. I won't go into that now except to say a
> small part of me wants to get up, start packing up my life and making
> the thousand or so miles between us go away. I know that this is
> unrealistic for more than one reason, but I still love her so much.
>
> There you have it, at this moment, this is me.
>
> In parting, as I said, I wanted to say hello to all the members of
> this group. That includes those who are actively posting **and** those
> who are not. It's not a provable statistic, but I could venture to
> guess that for every one person who regularly posts there a hundred(s)
> who do not.
>
> If you are one of those "lurkers" please do not be afraid to reach
> out. I can easily see this is group is full of loving souls, and as it
> is in any public forum, occasionally salted with a flake, spammer or
> other type of pond scum. DO NOT let any self absorbed idiot scare you
> off, make you unsubscribe from this group, or prevent you from
> reaching out. Realize instead that they are either mentally ill or
> simply shallow enough to enjoy tormenting others. They aren't worth
> anything more than the consideration that they are sad little people
> that will never be complete human beings and leave it at that. DO NOT
> let them win the stupid games they will try to make you play. Learn to
> ignore the impulse to respond to them and use your browsers kill
> filter so that you never see them again. PLEASE.
>
> Be here for *you* or the one you love.
>
> This is *your* life. Right here. Right now.
>
> For the time being I will "lurk" myself, as I know nothing of
> consequence and even when I do I am no doctor and will always have
> that fact in mind. The only thing I would like to ask the group for at
> the moment is some "recommended reading." I am going to purchase The
> Lupus Book while I read the library copy and was hoping someone could
> recommend other books, or perhaps even some online sites with articles
> or a good forum. I intend on reading for myself as well as sending my
> love some reading material and would truly appreciate anyone's help.
>
> Thank you, and thank you *all* for being here.
>
> With kindness and love,
>                                          Fluke
[ Auf dieses Posting antworten ]
Antworten

Random Fluke (30.01.2007 14:23)