Author Topic: The top ten worst suggestions commonly given to someone with a chronic illness  (Read 30905 times)

Meld256

  • Guest
bloodless,

LOVE it! ;D We really need a sense of humor not to slap these people...I have just a couple more if you don't mind:

If you'd just get out more...
We all get tired...
These things happen to us all as we age...(said to me by my formerPCP!

Thanks for sharing!!

Billydude

  • Guest
I echo Daisy.   I've had all of those she mentioned.    It just drives me crazy when someone says that we are all getting old and have our aches and pains.    I've also had the one with someone saying that I choose to be ill.

Meld256

  • Guest

I know; I think the part about getting old drives me nuts. I am 54, not 84 and until I was 52 I could work and play rings around anyone 30 yrs. my junior!

Yeah, I'm filing for SS disability because it's SO much easier going through all this paperwork and waiting, being late on rent and barely affording prescriptions rather than go back to work. NOt! So lovely fighting my company short-term disability for benefits after I was approved and then denied for the same reasons. So much fun being stuck at home alone most days because I don't have the strength to get out anywhere. Wonderful to drag myself to doctors who don't know what to do, don't listen and don't seem to care.

Sorry to all; I just took a really funny post and went on a rant!  :P I apologize, guess it's time to go to bed and try to wake with a much better attitude!!
Take care, everyone. Melinda

warmwaters

  • Hero Member
  • *****
  • Posts: 1872
  • Just keep swimming - Dora
Yupper, I don't want to work, yah, that's the ticket.

That's why I've been seeing a therapist for the past few months to deal my feelings of loss that I can no longer do what I used to (especially about work). Sure. All in my head. Yup.

Things not to say...
From my mother, today...

Well, does the doctor think there's something you can take for that?

(note: sweet mom who just wants her daughter to feel better)
Response: Sure, that's the ticket, the 9 doctors I've seen this year are just holding out on me, but soon they will reveal the magic thing that will make me feel better.

I know she is really just expressing her concern for me, but......................  it still hurts
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

LizPetillo

  • Guest
I've also had the one with someone saying that I choose to be ill.
Yep.  Heard that one too.  From a friend who is a NUN!
You choose to act ill.  Or you choose not to.
She was a friend for 20 years. 
I stopped communications with her a few months ago because of that.

bloodless

  • Hero Member
  • *****
  • Posts: 897
Colloidal Silver? I've never even heard of it. I guess you can add that to the list. I don't take anything without my doc's consent.

Here take this....it'll cure you.
I miss the good old days. Things were more like they used to be back then.

Sjogrens, Lupus, Fibro, GERD

Meld256

  • Guest
I love warmwaters post about "Isn't there something they can give you for that?" Right, there's a magic potion that will cure but the docs are just "messin' with us" not prescribing it!

Ah, the feelings of loss; right there with ya...I'm still in my grieving stage for the "old, healthy me". And with our physical issues, guilt and grieving of our old selves, people suggesting we drink this, do that, eat beans (that's a new one),(Colloidal Silver? )don't do that, then people wonder why we need therapy?? ???


puccini914

  • Guest
I have to say it, I am one of those who is extremely sun/heat/UV sensitive.  10-20 minutes in direct sunlight and I'm sick for at least 3 days.  Any longer and I get a full blown flare with hives, severe joint pain and fatigue like I may as well be dead already.

I have one friend who has known me before I got sick and all through this, she still tells people that "I just need to get out more, I need more fresh air and sunshine and I would be fine."  She's not a real bright one and she really doesn't mean any harm, but Good Lord it's been over 4 years!!

bloodless

  • Hero Member
  • *****
  • Posts: 897
The "You need to get out more." response is especially funny. Yeah, like we purposely inprison ourselves. I'd love to feel good enough to get out more. I'd love to hang out in the sun more. I don't always have a reaction to the sun and certainly not as bad as some, but I still won't risk it much.
I miss the good old days. Things were more like they used to be back then.

Sjogrens, Lupus, Fibro, GERD

navydad

  • Guest
I too have gottten the (were all getting older,, aches and pains come with the territory,)..ya right,, I love not being able to feel my feet,, feel my hands,, feeling cold when its not,, heres the sad part,, People today are so used to going to the doctor,, they get a scrip,, they take it and they get better,, they get some kind of surgery and they feel better,, now take us,, we take pills just to survive,, our friends and family see us just sliding downhill and they even begin to wonder if it isnt all in our heeads,, think about it,, they are healthy,, were not,, they feel fine were not,, they project there wellness on us and wonder why were not feeling like they do when in fact they dont have a clue what we are going through
  My wife calls me at lunch time every day,, asks me the sdame question,, are you ok,, I could have just crawled halfway to the phone and all I can say is ya i;m ok,, my sister just says,, well its going to something you have to learn to live with,, this from the same women who came over the noght freaked out because she had a lump on her hand,, it was gone the next day,, but she was sure it was something sinister,,, my mom hasnet called in months,, sure I am just depressed,, sure mom,, I want to be depresed and sit at home,, knowing wvery line of every commercial on TV,
  I have one friend left,, she calls me almost daily,, but she and her husband are building a new house,, but stilll wants me to come out there to get away from things for a while,, she actually has a clue what i;lm going through,, I may take her up on that,, but its getting cold out there,, and I just cant handle the cold,,

Meld256

  • Guest
Navydad,

Yep, that's a great one, "well, something you will have to learn to live with".  Would THEY want to learn to live with it? I most seriously doubt it! 

Sounds like my now former PCP who asked how the Relafen was helping me; I said well, maybe by 25% and he replied " you know we can't shoot for 100%".  I told him I'm not looking for a miracle but you don't seem to want to help me any further. Therefore, (along with a constant nasty attitude from his RN) as of this week he is now my FORMER PCP! I've never left a doctor before in my life for reasons other than a move, etc. but then I've never had this in my life either. I do not need any kind of negative, apathetic attitude from anyone in my life but especially not from a person I'm entrusting to help me. Guess I'm preaching to the choir, there.  :P

I hope you can make it to your friend's new home. A friend who actually understands is worth gold...
Take care,
Melinda

bloodless

  • Hero Member
  • *****
  • Posts: 897
A friend that understands is worth her weight in gold. I sent out the spoon theory to my daughter, sis and a friend. I haven't heard from them since.
I miss the good old days. Things were more like they used to be back then.

Sjogrens, Lupus, Fibro, GERD

Billydude

  • Guest
Oh .. and the all time worst ....
People say - you'll get better someday soon.
Even after being told that there is no cure.
There is no getting better.  Only maintain or get worse.

I know they are trying to be nice and 'cheery'  but it just reminds me that I wont' ever be better

Oh Liz....I hear you on this one.   People mean well but they are always saying things like "I hope you have a speedy recovery"

BonusMom

  • Hero Member
  • *****
  • Posts: 930
My mom, who lives out of state, just spent a week with me and made a point of telling me how I start to clean house but always find a reason not to finish.

Martha Stewart I'm not, but I'm not a slob and I do work full tima and my spouse does NO housework, pays NO bills, does no cooking/food prep and does NO grocery/clothes/gift shopping.  All household duties fall on my shoulders.

The perfect Christmas gift, Mommy Dearest, maid service since I'm so inept!

Rhonda

  • Guest
I love this!  I have one to add too.... "I know exactly how you feel" ..... sure you do!  Unless of course you are a fellow AI sufferer!  :-)

Thanks for sharing!