Do you tell?

Hi MELttdown, that's a good question.  When first diagnosed (4 yrs) ago, I did not tell anyone but my Mother and Sister and asked that they not tell anyone, of course my Mother complied but somehow I guess my sister did not pay attention, she also told her daughter. 

So now when we are with anyone she somehow manages to get around to telling that person or persons that I have Arthritis and RA.  I would rather not anyone know.  I also told two of my best friends and they have not told anyone to my knowledge. 

My doctor did not put Lupus down on my records for insurance purposes, only Inflammatory Arthritis and RA.  Sometimes I feel like I need extra care too. 

I just started a new part time job a month ago (on my feet alot).  It has been very difficult for me.  Especially since no one at work knows.  A lot of us do look normal and act normal and appear totally well.   It's hard to decide when to tell and not to tell. 

AnnieRae

Believe me, you won't become "poor Mel", rather, knowing how ignorant most people seem to be, you'll be "hypochondriac Mel" or "Mel-thinks-arthritis-is-serious-but-i-have-it-in-my-shoulder-and-i'm-fine"! At least that's what I find, with the vast majority of ignorant people. Some people, fortunately, are more enlightened :)

Unless of course, they're a good friend, and you have the time/opportunity tell them you have an auto-immune disorder, and explain that the treatment can be as harsh as the disease, given MTX is basically chemotherapy. I seem to have assumed you have RA here, but I just noticed you didn't say!

Due to being constantly so worn-down, I use a hell-of-a-lot of products in order to stay looking good, and people naturally assume you cannot simultaneously feel like the world is falling in on you, while looking so darn good. It's a curse ;)

Take care and feel better,

P.S.

"do you tell people in your life about your condition?"

My answer would be generally no, unless I physically can't do something and need to explain why. Almost all my friends know, and i'ts surprising to me when I realise I haven't told someone, and I make a comment about it - or whip out an MTX syringe and their jaw drops. I feel like punching people when they ask me "where is it? [the arthritis]", though.

It is hard, Mel.
I've found I had to be honest with my bosses at work, especially as each year I seem to need great chunks of time off to accomodate flares. They have both been extremily good about it. With my classes I tend to keep quiet, if I wear my wrist splints on a bad wrist day, I just say its carpel tunnel, everyone can relate to that.
You find you listen to endless stories about sore fingers or ankles otherwise. People just don't get it.
My extended family found out in a big way with my last flare because I was just so ill and its taken me ages to recover, but I don't dwell on it. Same with my close family, if I'm cranky they tend to put it down to pain.
I'd tell your room mates the basics, I have a chronic disease, causes pain and tiredness, meds are a bit heavy to deal with. Just keep it light and fluffy, then brush off any unwanted attention.
Thats what I'd do. Otherwise they'll think you're lazy or a bit whacky. So hard to find that balance isn't it?
Best wishes, golitho

Hey guys, thanks for the advice. Much appreciated, believe me. I'm so excited that I found this site... but I digress...

I've decided to tell my colleague (the two I'll be sharing the new office space with) the light and fluffy version (thanks for the tip, golitho). It's my style. Agreed, Jo: do not want or need the unwanted pity, nor the

thanks Jay, you're response not only enlightened me (hadn't hit "hypochondriac Mel" just yet, but maybe that's because I haven't shared with many people yet and I'm new to the frey so to speak) but also made me laugh ("what a curse" haha... I look just like the next person in my office & I certainly love my concealer).

SydneyJo: yeah, wasn't happy and if we do have to go on this merry-go-round ride again, I'm going to pick a different time of day (on the way home from my son's soccer game wasn't the best time to go I think in hindsight lol).

Weary, I'm very interested to hear about MTX "getting you to a place where you can do everything you have to do again". How long did it take to make a difference?

Weary, your advice has given me hope.

I'm newly diagnosed. I'm sure you guys can remember what it was like when you were first diagnosed. It's overwhelming, a bit scary (once you get over the shock - I don't think it really sunk in for a good couple of weeks) and not just a little despairing when you realise what you wanted your life to look like isn't necessarily going to be what you believed it was going to be.

Being newly diagnosed, of course, means I'm in pain. Lots of it. Because if I hadn't been in pain, then I wouldn't have gone to the doctor with my arm's length notes in hand, in tears. Years of "sciatica" (six in actual fact) had meant being in pain was a part of everyday life already to a varying degree depending on the day. But this pain, this overwhelming pain, this was new.

So, lots of pain, finally a diagnoses, I go through all the emotions (and I'm sure I have yet to experience even more), onto the meds... hope is building.... Nothing.

I pull back a little on the inflammatories and painkillers every now and then so I can measure whether the MTX and/or prednisone my doc has me on has made any difference and, so far, nothing. I would be lying if that wasn't just a little disappointing and disheartening.

So, Weary, your story above has given me hope! Perhaps I could suggest to my doctor (in very much a "it was all your idea what a fabulous doctor you are (now give me what I want)" kind of way!)? Or, of course, he could suggest I try something else. He did say that what he was trying out on me was a "middle of the road" treatment (not the most, nor the least, aggressive).

Anyway, once again, it's so wonderful to "speak" with others who truly understand what it's like.

Oh, and it's my birthday tomorrow! (so I'll have to change my sig tomorrow! hehe) I'm celebrating this year! Woo!

HAPPY BIRTHDAY MEL!!!!! Hope it's a good one!

My heart goes out to you. I also was secretive for years to obtain and keep employment. At 45 went out on disability with hands that had no strength or flexibility. knees, feet hurt most of the time. Once away from stress things got better but of course people avoid you seeing the disfigurement. Hang in there and keep an optimistic attitude. Many of us with this ugly affliction.

Hi Mel and Happy Birthday,
I understand what it's like to look "normal" and be in soooo much pain. For me it started around age 7 and I
remember vividly my feet hurting like heck in school. When I was a teenager it took over my legs and now I
have it in most joints, including my ears (strange place, but true). I was finally diagnosed when I was 25 and
my ex thought I was making up the pain as some days I could barely walk. I'm now 56 and still going. Some
days it's hard but I just take it one day at a time. I work in a dishroom of a 200 bed nursing home and have
a very physical job but I can still outwork the 16 year olds. My Grandaughter is complaining of her legs hurting
and I hope she doesn't have this as I know how bad it can get. My nephew was diagnosed at 2 yrs old and my
Dad was about 7 when his started. You may find this runs in families, especially the early onset stuff. People look
at you like you're nuts when you tell them that you've hurt for longer than they've been alive!!!
Good luck and I hope you feel better
Nana Monster