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Sjogrens Topics => Living With Sjogren's => Topic started by: bloodless on October 05, 2010, 12:08:27 PM

Title: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: bloodless on October 05, 2010, 12:08:27 PM
From "You don't look sick"

Sometimes you just gotta have a sense of humor!


The top ten worst suggestions commonly given to someone with a chronic illness:
1)Have you tried holistic options? (many. I?ll bring it back up with my doctor on my next visit, thanks.)
2) Could it be your stress? (My opinion is, it is my illness. I?ll bring it up with my doctor though, thanks.)
3) Could it have to do with the altitude? (I?ll bring it up with my doctor?thanks.)
4) I read in {insert any generic magazine here} about a new medication. Have you heard about it? (I was on it when it came out 17 years ago. but I?ll bring it up with my doctor. thank you.)
5) Have you thought about being in a trial study? (I?ll ask my doctor. thanks?)
6) WOW. If I were you, I don?t know what I would do. I might just kill myself. (Thanks?)
7) Have they found what is causing the problem? (no. my doctor is an idiot. I?ll remind him, thanks!)  Have you tried hypnosis? (I?m still sick, but when the phone rings I bark like a dog.)
9) Have you googled your illness? (?.no! thanks!)
10 Have you ever thought you were getting sick because you haven?t wrapped your house in aluminum foil because, you know, the aliens have been bugging our houses for the past 30 years and in some cases, making people really sick. I read on?..gee I lost the web site. but it?s true! I heard it from Sally?s cousin?s sister-in- law. And then every time you use deodorant you would think you would be warding off these bugging rays, but it still makes it worse, so you are not being pro-active to your health by wearing that deodorant. I can?t believe you! If you wanted to get better you would stop wearing deodorant..(voice gets fainter and fainter the further you just walk away.) THANKS!!!!!!!!!!
Article written by Amy-Beth Maran , ? 2007 butyoudontlooksick.com
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: babycakes on October 05, 2010, 12:10:40 PM
absolutely hysterical i love it!!!!!
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Carolina on October 05, 2010, 12:13:22 PM
Perfect.
Perfect idiotic suggestions and comments.
Perfect answers.

Kisses

Elaine
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: bloodless on October 05, 2010, 12:14:00 PM
OOPS! According to the rules I wasn't supposed to post it, but only a link to.  I imagine the post will be removed shortly. My apologies.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: inga on October 05, 2010, 12:22:20 PM
How about this, "Every one has to die sometime".
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: ohiolady on October 05, 2010, 02:06:55 PM
Inga,

I don't know if you are joking but someone did say that to me.  So, that is my worst, seconded by "You look good, you don't look sick.

Anna
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Rayven on October 05, 2010, 02:10:09 PM
I still fight the 'you don't look sick' battle with my husband. UGH!

Love the list!
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: ynevar on October 05, 2010, 02:27:11 PM
OH MY GOSH FUNNY AS HECK!  Thanks I am glad I read it before it was removed! LOL

-Y
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: deeindiana on October 05, 2010, 02:28:08 PM
Thanks! #7 made me LOL.  *woof!*
Deb
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: bloodless on October 05, 2010, 02:43:51 PM
Anna, I know, I've had some of those on the list said too me. I hear "You're not hurting that much." or a variation of it, quite a few times. I guess I just enjoy moving slowly, walking weird and drawing funny looks from strangers. Everyone's gotta have a hobby.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: gphx on October 05, 2010, 04:14:45 PM
"You don't look sick"

"Thanks! You don't look stupid either so we're even"
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: SLEEPY101 on October 05, 2010, 04:24:29 PM
Love it!!!
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Daisy1234 on October 05, 2010, 04:48:23 PM
Bloodless, those are really great things NOT to say to someone with Chronic illness.  I'd like to keep adding to your list if I may with additional comments from the not so popular peanut gallery:

1. There are a lot of people worse off than you
2. You'd feel alot better if you'd just get off all of those pills
3. We all have our crosses to bear
4. You could choose not to be sick if you really wanted to
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: susanep on October 05, 2010, 05:02:50 PM
I love it , I love it, gphx all though they are all great, I really love the stupid thingy. ;D ha ha.
You all don't know how much and timely this thread is for me today. Me and my husband both barely made it through today, because of things like this and the stress at different offices today!

I felt like I was just about to check myself into a looney bin today, but I am not sick. :o with how I felt. literally!!!  No offence either when I say looney bin. Just trying to cheer myself up.

susanep :)
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: inga on October 05, 2010, 05:04:41 PM
Ohiolady, I am not joking....some one did say that to me....my sister.

Which is precisely why I don't discuss my illness or expect any one to understand.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: DragonflyC on October 05, 2010, 06:09:57 PM
Oh, Daisy, that "you'll feel better if you get off the meds" one makes me crazy. 

Today, I mentioned having been bit by a spider about twenty years ago, and my friend asked if that might be what caused my autoimmune problems.  He's sweet and is one of my most supportive friends, but it made me laugh.  I completely understand why people want to find a reason, but sometimes stuff just happens.  Oh, and my Scandanavian genes certainly don't help!
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: stormchaser on October 05, 2010, 06:31:36 PM
 

 I haven't been officially diagnosed yet, but I was in pain the other day lying on the couch while visiting my grandmother and my aunt says "you don't know the meaning of pain, just wait til you get to be my age."  Yes, because age totally determines the amount of pain you feel. I wonder if she'd trying saying that to a young trauma victim or something...
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: ynevar on October 05, 2010, 07:11:34 PM
"Just think positive!  Think healthy!"  :D

DUHHHH!  If it was that easy do you THINK????? ??? I'd be feeling like this????? >:(
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: season on October 05, 2010, 08:47:25 PM
This is one that I was told recently................"I am much more sick that you are."      This person has sjogrens also.

This is my question. How can someone look at someone else and determine the amount of pain someone has?
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Epson on October 05, 2010, 09:14:29 PM
When people tell me, you don't look sick, I always tell them that I didn't look sick when I had a golf ball sized cancerous tumor in me either.  That shuts them up.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: eyeamdry on October 05, 2010, 09:22:28 PM
Epson, I'll bet makes their ears burn.  I can also use that one, and will.  I can't wait until somebody says "that" to me.  heehee
Lucy
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: proudmom on October 05, 2010, 10:00:18 PM
I hate the but you look good. The best was while I was laying on my living room floor and my brother said oh you don't feel good well you look good.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: LeoLady on October 05, 2010, 10:55:45 PM
Thanks for sharing Bloodless.  Made me laugh...Arf, Arf!

LeoLady
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Elida on October 05, 2010, 11:29:55 PM
Eeeyy...what's wrong with Scandinavian genes???  ;)

Seriously, I've herad so many sentences and suggestions about how to recover, that I might have enough to write a book about what people say to chronic ill patients. This thread made me giggle though.

My doctor actually reminded me of that last time I saw him that there are people that are worse off than me. As if I didn't know, but how does that fact help ME?

I think some people just say things just to have anything to say when they don't know what to say. Others are completely in lack of knowledge and empathy.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: BonusMom on October 06, 2010, 12:20:54 AM
Here are some healing crystals.  Just put them close to your heart and you'll be healed.  If it were only that easy.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: LizPetillo on October 06, 2010, 03:43:45 AM
EXCELLENT thread!!
Here's some of the stupid things I've been told -

1 - You look/sound healthy. 
2 - You have a bad attitude, you must WANT to be sick (my PCP told me that!)
      (being realistic = bad attitude   :-\   )
3 - God must want it for some reason, stop fighting God.
4 - You are exaggerating your illness.
5 - It's not like sjogrens is terminal or anything
     (even after being told of the very serious complications)
6 - Get off the Western meds and try the natural (untested) herbs
     (sure, like I need strange unknown herbal side effects on top of everything)
7 - You need to pray more/you don't pray enough
8 -  It all happens for a reason
9 - your response to this is wrong
     (from people who have never gone through the 5 stages of grief)
10 - So you can't eat trigger foods (grains/pasta/citrus/sugar etc.)  You are healthier for it.
      (no .. I'm not getting a balanced diet)
11 - Go ahead and eat those trigger foods, you have to be happy.
      (even two bites of bread will lay me up for 2-3 days with a flair  :-\   )
12 - So you lost 60 pounds (so far), you can buy all new clothes!!
       (I feel like crap so shopping is a chore ... and expensive)
13 - Get out of the house, you'll feel better.  Go shopping or to the beach ...
       (I'm too tired, too sore, too numb in the legs, and UV from the beach will flair me)

Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: LizPetillo on October 06, 2010, 03:46:36 AM
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
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: bloodless on October 06, 2010, 06:24:15 AM
Daisy, Dragonfly, I can't count the times I've been told I'd probably get better if I got off all those pills! That was good one to add to the list. I just tell them, "If you knew what I was like and what I'd be like if I went off them you wouldn't say that. Besides, I like breathing." That usually makes 'em reconsider.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: tangowhiskie on October 06, 2010, 07:38:35 AM
My RHEUMY recently suggested to me that my severe muscle pain was due to being stressed out and overly emotional.

I about smacked him upside the head!  My low stress level has actually been welcoming recently - I've been quite happy and content.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: LizPetillo on October 06, 2010, 09:39:10 AM
My RHEUMY recently suggested to me that my severe muscle pain was due to being stressed out and overly emotional.
Oh .. that's right .. thanks for reminding me ..
'you're being too emotional about this.  It's not that big of a deal' (from doctors).
 :-\ freakin' idiots. 
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Meld256 on October 06, 2010, 09:48:06 PM
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!!
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Billydude on October 06, 2010, 10:14:25 PM
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.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Meld256 on October 06, 2010, 10:33:42 PM

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
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: warmwaters on October 06, 2010, 11:45:57 PM
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
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: LizPetillo on October 07, 2010, 03:32:01 AM
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.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: bloodless on October 07, 2010, 05:57:07 AM
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.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Meld256 on October 07, 2010, 09:36:51 AM
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?? ???

Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: puccini914 on October 07, 2010, 07:56:13 PM
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!!
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: bloodless on October 08, 2010, 11:17:38 AM
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.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: navydad on October 08, 2010, 12:11:26 PM
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,,
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Meld256 on October 08, 2010, 05:30:12 PM
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
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: bloodless on October 11, 2010, 06:53:43 AM
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.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Billydude on October 11, 2010, 10:03:28 AM
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"
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: BonusMom on October 13, 2010, 09:00:02 PM
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!
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Rhonda on October 14, 2010, 08:14:14 AM
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!
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Shani on October 14, 2010, 10:56:50 AM
Love this, it's hilarious but then yet so very true!
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: maroza on October 14, 2010, 01:05:50 PM
Two of my brothers and sisters have asked me since I was diagnosed with Primary Sjogren's ..."Whats changed from before you were diagnosed and after????"  They don't understand.  There are days that I just go home from work and go right to bed because I feel so bad.  Some days I have to wait for my body to catch up with me because of the fatigue.  I have also fired a doctor because of the way he treated me.  His first statement to me was it is just a mild inconvenience and that I will live a long and happy life with it. 

I think that people have problems understanding something that they physically can't see.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: marilyn143 on October 14, 2010, 09:36:49 PM
OMG I LAUGHED SO HARD  ;D  thank you and I'm gonna print that and put it on my fridge so next time my neighbor "maybe a sinus operation would help" yeah sure that will fix it ...."we all get old" my pcp  and others ,even though I been having major problems for at least 16 years and just turned 45 last week. so many opinions so many dr.'s yet the ONLY ones who have a clue are the people here :-*
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Rhonda on October 17, 2010, 02:38:21 PM
This thread makes me chuckle each time I read it.... not because it's funny, but because we are all facing the same stupid comments.  How about this one? I had a co-worker to ask me if I had considered goinog to a hands-on healer?  She said her sister had healed many people with far worse conditions and I should consider going to see her. 

Ok... not sure if hands-on healers are valid... but I didn't go.

Like someone said earlier in the string - I am 51 - NOT 81 and I want to live my life just like anyone else.  It is definitely not my choice to  feel bad everyday and sit around in the house alone, struggling to pay bills since I'm no longer working.  Nor it is my choice to keep a calendar on the fridge so I can keep track of the 9 different doctors I must see to manage everything.  Yeah... I chose this life.... and what a life it is...... NOT.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: DSPeter on October 17, 2010, 04:27:59 PM
Bloodless and Daisy1234,

I have heard them all since my dx in August!!!
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illne
Post by: Justdave on October 17, 2010, 05:19:54 PM
I hate...

"That"s just an excuse not to.......so and so...visit so and so or to help out in some meaningful. Manner.  I am always frowned on when I don"t help someone move. What are you nuts, I can't lift anything over fifteen pounds without tremors and you want me to grab the side of a couch.

Medicine limitations are a pain too for people to understand.

Yeah my fear of visiting a family member who is recovering from a highly contageos intestinal disease while I am on three immune suppressants is irational.  My sister gave me that guilt trip...if nurses are wearing masks, I'm not going in.   I like my life as sad as it is, and would like to keep it.

Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: bloodless on October 18, 2010, 06:33:56 AM
Quote
Whats changed from before you were diagnosed and after?
I don't think anyone that hasn't been ill and waiting sometimes years for a diagnosis can possibly understand. When I was finally diagnosed and was able to tell my family I mostly got the deer in the headlights look. I got the "Well, that's not good." too. I don't know if it's just that people don't know how to respond or what. I wish they would google my illnesses, so they'd have some idea what I'm up against. My sis has told me jokingly "You just didn't drink and smoke enough when you were younger."  ;D
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: LizPetillo on October 18, 2010, 10:45:22 AM
Colloidal Silver

Some folks swear by it.  I'm afraid to even chance it.  I tried the Centrum Silver and it made me itch all over and also gave me a huge fatigue downer.  Anything with the word 'silver' makes me nervous now. 
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: meow on October 18, 2010, 03:34:57 PM
" You know, if you just got some more exercise, a lot of those little problems would go away."
" Are you drinking enough water?"
" Oh, my sister/aunt/boss's niece had that and she was fine."

Which is why I say it's like lupus when I want them to shut up. Everyone has heard of that, and they are all scared of it.
Usually I just don't say anything. No one at work knows, even people I have known for 15 years. Only my immediate family... and you guys!
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: bloodless on October 19, 2010, 06:40:56 AM
Quote
" Are you drinking enough water?"

That's funny! I wonder how they think that will help? I got the "My _________ has that and she's fine." twice this weekend!! What are the odds?!! Have you ever noticed noone says, "That's awful. How are you feeling?"
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: slang on October 19, 2010, 07:05:53 AM
I have just figured out not to tell anyone anything about how I am. I guess I am a silent sufferer. If I tell my mom she worries non stop and no one else wants to know. :-\
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Rhonda on October 19, 2010, 08:29:34 AM
Meow- You hit the nail on the head - when you say  people are scared of Lupus and know what it is... it's amazing when I tell them I have SJS, they look at me like I am an alien.  When I explain what it is, they say - oh... I know some great eye drops you can use - or I have a great skin cream you can use.  So, I usually say, it's SJS - which is a sister disease to Lupus.... much easier - and they don't usually have so many "remedies".... but they have plenty of stories to tell... and that takes the spotlight off me.  :-)

Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: meow on October 20, 2010, 11:09:19 AM
Well, the water question is because my eyes and skin are always dry and itchy...If I'd only drink more water, I would be fine. My son's friend (age 25) who has lived in China a few years studying martial arts and herbal healing hocus-pocus, tells me in all sincerity that my chi is out of balance and I need to drink Noni juice. He is a sweet, loving young man, and he loves me and my chocolate-chip cookies (unavailable in China) so I just smile and say, "Eric I think your problem is you need to eat more cookies ."
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: bloodless on October 20, 2010, 01:44:27 PM
Oh well, if our chi is outta balance, by all means how do I balance it?
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: puppybreath on October 20, 2010, 05:39:01 PM
There are some funny things on this thread!  When I was little back in the late 50's early 60's if you told anyone you felt sick, they'd ask you if you've had a BM!!
LOL!!  That was the cure for everything, just go poop!   :D
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: slang on October 21, 2010, 05:10:35 AM
That's funny! When my kids tell me they have a stomach ache that is the first thing I say! Go to the bathroom and try to poop!  ;D
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: BonusMom on October 21, 2010, 06:35:54 AM
I saw an uncle recently who I hadn't seen in many years and he told me that all ineeded to do to cure ALL of my medical issues was to drink carrot juice and offered to whip me up a batch to take home with me.  Oh, and turn yellow/orange like you Uncle Jim?  No thank you!
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: bloodless on October 21, 2010, 11:28:06 AM
How funny Puppybreath! I'd forgotten all about the "go poop" remedy from childhood. That was soooo dumb!
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: meow on October 21, 2010, 03:10:24 PM
Homemade chocolate chip cookies and Noni juice!
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Meld256 on October 24, 2010, 03:58:14 AM
I've been out a while, but think this thread is very theraputic. Good Lord, what we've all heard for advice. I've gotten a lot of the "deer-in-the-headlights" looks. Great idea about mentioning along the lines of lupus, since most have a good idea that lupus is difficult.
If I start by explaining dry eyes and mouth, and am not detailed about HOW dry, I get someone saying their opthamologist told them THEIR eyes were "a little dry". (!)  One day I told asked one of those people if they could hear their eyelids sticking together like I can...couldn't help myself. Of course, they said, ohhh, noooo!

Thank goodness we have a place to compare the things we've heard goofy people say to us. :)
Melinda
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Billydude on October 25, 2010, 10:13:58 AM
My mom has celiac as I do and whenever I try to tell her about my health things she immediately blames it on the food I'm eating.   I keep telling her its bigger than a food allergy.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: bloodless on October 25, 2010, 02:28:40 PM
I get that from arthritis sufferers. They try to out arthritis me. And that chondroitin stuff is useless for ai arthritis.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Prairie Gal on October 25, 2010, 03:01:53 PM
Bloodless, I told my husband about the recent Swiss study that confirmed glucosomine-chondroitin does relieve arthritis.  He said his dr. told him it wouldn't hurt him so to take it if he felt it helped.  The power of the mind over the body...also known as the placebo effect.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Prairie Gal on October 25, 2010, 03:03:39 PM
OOPS!   I meant to type..."doesn't relieve arthritis."
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Bobbie on October 25, 2010, 04:16:20 PM
What about "I probably have too much vitamin D in my body because of all of the time
I spend outside". 

I told him, "I have to supplement  because I had practically none and if I stop taking
my mega dose, I will take a dive in the vitamin D department".

Then he says, " I guess everyone in Michigan has really low vitamin D just like you ..........Not really.............

Oh my, 

Bobbie
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: irish on October 25, 2010, 08:45:50 PM
How about the people who don't say a darn thing. They just ignore anything you may have said about health, doctors appt,etc. I have some relatives who are like this. I often wonder if they are mad because they can't compete with my illness.

Really makes you wonder where people brains are at and what they are thinking. Also, the ones who make little snide remarks in order to not affirm what you just said. I really think that they are jealous because the minute they get a hangnail they whine and moan and want attention. They ain't gonna get it from me!! :o Irish ;D
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Tinker on October 25, 2010, 08:54:01 PM
WORST ADVICE OF ALL TIME:  Have a positive attitude and you'll get better.  Yeah, right. 

And that positive attitude will keep me hopping with energy and happiness!  Yeah, that's what I need.  BTW, I read a study recently that said that people who plan ahead for all kinds of problems are actually right on!  When do things ever go exactly as planned?  If having a positive attiude that everything was going to be fine would do the trick, then I wouldn't have had to resort to PLAN B, C, D, and F on many occasions.  lol
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Tinker on October 25, 2010, 08:55:12 PM
Love this comment, Irish.  SOOOOOO true.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Tinker on October 25, 2010, 09:32:48 PM
Just finished reading this thread and really loved it.  Especially the noni juice.  Can't tell you how many times I've been told (by the distributor) that's all I need.  "I'm tellin' ya, it'll cure cancer, and constipation, and diabetes, heart disease and eczema, fibromyalgia and this and that......."   don't ya wanna ring their necks? 

Here's the latest:  I was asked at a ladies lunch about my health.  Not wanting to be too wordy, I simply replied that I had good days and bad days but I was doing ok.  (I never tell the truth cause no one wants to hear it.)  And one of the nasty older ladies said to me, "Now, let's not talk about illnesses.  We're here to have a nice lunch."

My reply:  "Janie ASKED me how I doing, and I gave her a 1 sentence answer, so no, we are not dwelling on illness."

I avoid this person at all costs.  She's toxic and not well liked because of her sour disposition.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: BonusMom on October 25, 2010, 10:00:10 PM
And if it's not Noni Juice, it's Vemma, Zrii, POM, etc, etc.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Liz D. on October 26, 2010, 06:36:23 AM
We have all had some stupid remarks made to us. 

But on a whole, I think I personally am my worst critic.  Most of my family and friends are so understanding about it.  Always reminding me not to overdo it so I don't get knocked down for a couple of weeks.  But I do think it has a lot to do with my sing the term 'lupus' in conjunction with Sjogrens, explaining it is its first cousin.
People take that much more seriously.

It is me who is always getting mad at myself telling myself I should be able to do more.  Then I start getting upset when I realize I can't.

Liz D.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: meow on October 26, 2010, 04:35:24 PM
Noni Juice, colloidal silver, reverse ionized water, raw foods (including raw eggs!), you name it. There's a local guy who hosts a radio show about natural remedies, and he is the WORST. The only time he backs off is when someone wants help with cancer. He emphasizes that the patients MUST follow conventional treatments, and he has all kinds of additional nutrition and supplements to help. I thnk he's  just trying not  to get sued.

He advises thyroid patients to take iodine--which is fine, if your thyroid disease is because of an iodine defficiency[/i]. But if you have Hashis or anything else, taking iodine simply messes up your lab readings.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: jordozmom on October 27, 2010, 01:15:20 PM
Tinker - I have a person like that in my life.  She is just a bitter and nasty woman anyway, but here are my favorites - "Just suck it up." and "Have you ever thought of just telling yourself you're not sick?"  Nice, thanks for the support, you jerk.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: livewssj on October 27, 2010, 04:55:21 PM
I have one!!! Go out and socialize more that should do the trick! LOL Are you kidding me...
All my friends bug me to go out and dont have any health problems...
Love this thread
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: BonusMom on October 27, 2010, 05:14:07 PM
My SIL had the nerve to claim that I did this to myself for attention (never mind that I was always sick as a kid and I've been ill since the year we met) and my (former) BFF insists it's all stress related as in "If you wouldn't allow DH's ex-wife and your SIL to annoy you so much, you would have never gotten SjS or Lupus,  Now drink some Verve and you'll rid yourself of these supposed diseases."
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: DragonflyC on October 27, 2010, 05:22:42 PM
It makes people feel like they have greater safety in their own health if they can blame us for our illnesses.  They can tell themselves, "I won't ever get an AI disease because I don't get stressed/don't carry around anger/drink magic potions/run twenty miles a day/whatever."   
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Meld256 on October 28, 2010, 08:20:25 AM
Hi all,
I think we could keep this thread going forever...because others keep giving us stupid advice!  ;)

livewssj, don't think I'd taken time to welcome you, so WELCOME! You are right; I think we've all heard some version of "if you'd just get out more, go socialize more, etc."  They cannot understand how some days driving ourselves down the street or stopping in the grocery for a few items can be monumentous, much less get dressed up more to go ___ miles away and interact with a group for dinner or shopping can be downright impossible.

And people wonder why we feel isolated?...hmmm...thank God we have this forum. :)
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: livewssj on October 28, 2010, 01:28:20 PM
I have my first appt with a attorney tomorrow for my ssdi denial...
Hope she can have some insight...
Thanks for the welcome!:)
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Liz D. on October 29, 2010, 06:16:27 AM
Just last night a friend told me she is going to get me a bottle of Noni Juice because that will make me so much better.  All I could think of was this thread!!!

I graciously said I would try it just to be polite, but wanted to scream 'leave me alone -- you have NO idea what I go through!'.  But I didn't.   She is a good friend and I have to realize she is well intentioned.  Only those of on our forum truly walk in our shoes!

Liz D.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: bloodless on November 03, 2010, 02:23:14 PM
I'm almost afraid to ask, what is Noni Juice? And what on earth can Noni do for ya if you juice it? ;D
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Rhonda on November 03, 2010, 04:07:10 PM
I smile everytime I read this thread - it's just so incredible that we all hear the same things.... amazing that there are so many clueless people out there.  Amazing what we find humor in!  :-)
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Joe S. on November 03, 2010, 04:16:00 PM
Noni was touted as the magic cure all that was first multi-level marketed. With one sip I started to vomit. They tried to tell me I just did not take enough. I told them where they could put it an left. (My wife's Aunts and Mother.) When my daughter had the same reaction, it was not brought up again.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: nancylee on November 03, 2010, 04:34:27 PM
I was in the hospital hooked up with a central line for plasma and a PIC line and one of my friends said," you know if you got healthy you would feel a lot better."  Really???
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Liz D. on November 04, 2010, 12:54:05 PM
I personally think Noni juice is just a money making scheme.  Fruit is fruit.  I'll go by more blueberries, orarnges and apples at my grocery store without putting money in the pocket of someone in a pyramid scheme!!

I, too, tried Noni juice before and it was disgusting.  Of course, my friend is still insistent on having me try it with orange juice.  My personal opinion is that anyone who feels better on it is because of a placebo effect.

Liz D.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Billydude on November 04, 2010, 10:03:18 PM
Noni Juice to me is a modern day "snake oil".
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: navydad on November 05, 2010, 08:58:59 AM
All that crap they tout as cures makes me sick,, Sometimes I think I would be better off starting n the moring with a bottle of Boones farm strawberry wine and just drink it till i pass out and start over again,, after I take the dog out,, has to be better for me then all these pills I take which dont do nothing but fill up my stomach to the point I dont want to eat,, i;m full allready from the pills,,,
  On the idiotic sayings,, i got one yesteraay,, when I was asked how my arms were and I said they feel colder and my hands were number,, maybe if you just wore heavier shirts and kept handwarmers in your gloves,, I said do you mean when I go outside too and not just in the house,, stupidity knows no boundrys
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Meld256 on November 05, 2010, 01:44:47 PM
Sometimes I want to do a Bill Envell and say "Here's your sign..."  ;D
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Lesleybird on November 05, 2010, 09:44:08 PM
  My favorite is when someone says that if you take better care of yourself like they do then you would not be sick.....because they take good care of themselves and are not sick so the same should apply to you. In their little pea brains this makes perfect sense.

   My great aunt used to think I was sick because I drank too many diet sodas.                                Lesley
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Billydude on November 05, 2010, 10:15:16 PM
Lesley...I don't drink Soda at all and I'm in the same boat as you.  Can't be the Soda.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: bloodless on November 06, 2010, 03:36:38 PM
I really get annoyed when they look you up and down and tell you to exercise like them and you wouldn't be sick. If I wasn't sick, I would exercise like them and they'd be looking me up and down for a totally different reason!!
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: susanep on November 07, 2010, 01:16:07 AM
Ditto Ditto Ditto  ;D

susanep :)
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Pisces24 on November 07, 2010, 03:08:41 PM
How about when they bring up something personal as the cause?

Like you sure it is not something you got from your: cat, dog, child, husband, bad eating habits or anything else they can think of.
It has to be your lifestyle making you sick. Let me know every durn aspect of your personal life so I can play doctor and figure out what you are doing to make yourself sick.
oooooooh I got a busybody at work like that I had to "freeze out".
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: meow on November 08, 2010, 02:09:33 PM
I think people do this because they fear getting a random condition, and they want to be able to blame/diagnose something so they can say, "Well, I don't have/do that, so I am safe."

 It's a phenomenon that is occasionally observed among female jurors at rape trials. If they could pinpoint something the victime did wrong, they would feel safe, because they would never do that.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: DragonflyC on November 08, 2010, 06:37:42 PM
Meow, I completely agree.  It makes people feel like it couldn't happen to them if it's our own fault.  I only hope they never find out how wrong they are. 
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: meow on November 10, 2010, 01:32:11 PM
You are nicer than I am. I figure someday they will deal with some illness or condition that is not their fault, and then they'll figure it out. So in my brain when I hear dumb remarks, I just think, "YOU'LL SEE."
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: jordozmom on January 03, 2011, 01:13:25 PM
My boss said something a couple of weeks ago and it brought me back to this thread.  He asked me if I have considered seeing a different doc or getting tests done or trying new meds.  He asked if I had ever thought about going to Mayo or John's Hopkins?

WHY NO - THAT NEVER CROSSED MY MIND IN THE 10 YEARS I'VE HAD THIS DISEASE!  You mean go to one of them thar big city doctors?  Why heck naw, I ain't never thought of nutt'n like that.

Yes you dip - I have done all of that.  I've tried different docs and looked into bigger clinics and tried all different kinds of medicines and you know what, this is about as good as it gets.  I mean sometimes I really do think that people think we are doing it to ourselves.  I mean really, you think I feel this way because I'm neglecting it?!  Neglecting myself?!  What a dope!
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: susan on January 03, 2011, 07:21:42 PM
This IS a great thread! Thank you everyone.
From my HUSBAND:
"You worry way too much about little symptoms----you are not dead YET."
Thank you, I feel so comforted and supported! Grrrrrr!

Susan
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: momof2 on January 03, 2011, 07:42:57 PM
How about "At least you are still walking"  :o
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: CAT1962 on January 03, 2011, 08:14:49 PM
Mine??

1. Lose weight - you'll feel better.
2. Stop dwelling on it.
3. Take vitamins - you'll sleep better.
4. Go for a run........(what???? Run?? Jog?? haha!)
5. Join a gym.......(you  paying? Wanna see my Dr's bills??)



I'm too tired to list the rest...lol
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Nathan on January 04, 2011, 10:50:40 AM
"You can live with this disease, or you can die with this disease"
"Have you read Dr. X's book about magical medical cures?"
(Fill in the blank, Atkins, etc, it's all the same--Atkins suggests buying and injecting yourself with Calcium AEP, aka Colamine Phosphate, which carries some pretty serious side effects!)
"You're not sick, you're depressed" (Told to me at the absolute happiest time in my life, from a very ex-ex)


People tell us some pretty stupid things at times, but we have to remember to not be elitist about our conditions. I've met people who had medical conditions (especially cancer), and thought that no one could possibly even remotely understand what they were going through, and could not possibly have an inkling what life is like, because I don't have cancer (or other conditions). Keep an open mind, but don't get mad at someone just for trying to help. I've noticed especially men hold this "I have to fix this" mentality, which can get pretty frustrating. I find it easiest to just not talk to anyone about it. Most people don't realize the problems extend beyond dry eyes for me, and so they'll ALWAYS ask how my eyes are doing. It's hard to talk about, because most people don't really care about the specifics, and people don't want to hang around a downer who's always talking about how aweful they feel, how tired they are, etc.
If anyone has figured out the secret to talking to people about health, without turning people away instantly, I'd like to hear it. Especially in the dating world.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Nathan on January 04, 2011, 12:19:01 PM
How could I forget... "Take care of yourself"
EVERYONE says that. It's starting to get annoying... grr
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: lizzi on January 05, 2011, 08:53:29 AM


             theres a woman who i see at work from time to time and every time she sees me she tells

                     how glowing im looking

                               and

                      you look so healthy ,whats your secret


                            i just say oh thankyou


        i certainly dont think i look glowing or healthy ,in fact my hubby tells me how run down and pale i look,some people eh
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: dainbramage on January 06, 2011, 06:18:53 PM
M husband once said I thought you were being lazy...Ha got one on him
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: meow on January 12, 2011, 03:01:52 PM
My boss said something a couple of weeks ago and it brought me back to this thread.  He asked me if I have considered seeing a different doc or getting tests done or trying new meds.  He asked if I had ever thought about going to Mayo or John's Hopkins?

WHY NO - THAT NEVER CROSSED MY MIND IN THE 10 YEARS I'VE HAD THIS DISEASE!  You mean go to one of them thar big city doctors?  Why heck naw, I ain't never thought of nutt'n like that.

Yes you dip - I have done all of that.  I've tried different docs and looked into bigger clinics and tried all different kinds of medicines and you know what, this is about as good as it gets.  I mean sometimes I really do think that people think we are doing it to ourselves.  I mean really, you think I feel this way because I'm neglecting it?!  Neglecting myself?!  What a dope!

Tell your boss you went to Mayo over Christmas, and they said you would feel a lot better if your boss wasn't such an idiot.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: jpd54 on January 12, 2011, 04:03:52 PM
How about  "If you'd lose that weight you wouldn't be sick anymore"?????   Also, "You don't act like you are hurting"????

If people only knew!


jpd
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Karen on January 12, 2011, 06:30:55 PM
I've gotten:
.....You could have something alot worse, there are others that have much more worse conditions/life threatening illnesses then you do.
......You look so good, you never look sick.
.......Noni juice, try it, it's great for muscle pain?
......You really should do accupuncture.
......Try eating differently like going just fruits and vegs.....like that is going to take away my lupus, ra, & sjogrens?


The worse one for me is: but you look so good, you would never know your sick you never show it, so when I'm feeling so lousy on the inside what am I supposed to make myself
on the outside look like I just got out of bed, what don't do my hair, etc.....and yes I don't need to be reminded that there are other people out there that have life threatening
illnesses that they are dying from, I know they are because I've lost two family members from cancer and i have seen them die from it and I realize this so I do feel very fortunate that
what I have I can be helped with medication and treatments, but people really need to stop reminding me of this.

Karen
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Sha on January 12, 2011, 09:44:22 PM
I tell my hubby....just cuz I push through the pain, doesn't mean the pain isn't there!! ::)

Sha~who has too many peeps relying on me for me to NOT push through the pain ;)
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: tired of it on January 13, 2011, 06:36:23 AM
I have heard the following
Have you talked to a therapist
Have you tried walking
Have you read this book or that book
Have you tried just not thinking about it
Have you tried maybe doing jig saw puzzles to take your mind off it
Have you tried holistic medicine


I know a good Doctor
You look so good to be sick, are you sure your sick
Have they checked your blood
You sure you just dont get out enough and thats why you cant tolerate the cold
You probably have the same thing my Aunt had, they never did find out what it was,, shes dead now,,, (thanks)
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: JannaLee on January 13, 2011, 04:42:48 PM
Oh heavens I get the same remarks too!

Janna
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: mink on January 13, 2011, 06:33:26 PM
"why don't you go outside and get some fresh air, it might do you good"....WELL,  IF I COULD GET UP AND MANAGE TO WALK I WOULD!!!!!!!!

Sorry for the scream But it's just frustrating, but I can also understand that sometimes people feel helpless and can't think of anything to say
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: seaturtle on January 13, 2011, 08:58:28 PM
Ya'll really did good on this one.  The ones that hurt the most are:

You're just depressed-  my brother
It's that weight on you- my mother
Well, glad you could join us// must be nice to have banker's hours--  when I'm late to work and it doesn't affect the commenters at all.  Shame shame on smart remarks. 
It's those diet drinks you drink.  They cause symptoms of MS, etc.  You need to just drink water. 
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Parrot Pal on January 14, 2011, 05:05:14 PM
How 'bout the loving, concerned (but overbearing) cousin that constantly calls and emails and leaves messages saying things like, do you think it could be 'this' or 'that'.  Basically, thinking ignoring all tests, medicine, symptoms, etc. and turning them into something else.  How many times does she have to hear - I KNOW WHAT IT IS.  I'VE BEEN THROUGH DOZENS OF TESTS AND APPOINTMENTS. 

Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: meow on January 27, 2011, 02:59:50 PM
You probably have the same thing my Aunt had, they never did find out what it was,, shes dead now,,, (thanks)

ROFLMAO!    ;D
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: dainbramage on January 27, 2011, 03:11:34 PM
I have said this before but it is quite funny because after I was diagnosed and I informed my husband and he went to work and met a lot of SjS women in critical care unit (now that I have it he sees more women coming into his unit with this disease..you know you don't know what something is until someone in your family has it)
NOW ITS YOU ARE SICK AND YOU WILL BE DISABLED SOON AND WE NEED TO THINK OF OUR FUTURE AND SHOULD YOU BE DOING ALL THAT AND WE NEED TO FIND SOMEONE TO CLEAN THE HOUSE SO YOU WON'T BE TIRED... :D
Don't listen to your wife listen to all the other people
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: meow on January 27, 2011, 03:15:30 PM
Well, did he hire someone to clean the house? That would make up for a lot of dumb remarks.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: dainbramage on January 27, 2011, 06:28:23 PM
Meow..NO he didn't
He also doesn't stand up for me when people ask why I am anti-social, why I am tired ALL the time, why why why.
I think that hurts me the most. My bosses stand up for me and my close friends stand up for me, but my own husband? He wonders why I don't tell him anything? He isn't there.
I know I have issues too, but Oh I Don't Know ???
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: ynevar on January 27, 2011, 09:02:21 PM
why don't you go have a social life?  I am just happy i can get dinner done.... or wash my freakin hair....

GAH!
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: dainbramage on January 28, 2011, 03:38:07 AM
ynevar
I have somewhat social life, but when I don't feel good I don't think about anyone else so I ignore everything else. I guess my demeanor changes so people think I am being anti-social. :'(
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: momof2 on February 08, 2011, 08:36:26 PM
Well.... It's just Sjs right? You only have dry eyes and mouth. Nothing eye drops and a sip of water wont take care of. Ughhhhhhh. How could they not know it's so much more. Grrrrrrrrr It really does make me feel ignored. Even when I try to tell them... I hear, "Well my mom has it and she is just fine. She carries water with her all the time. No big deal."
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Joe S. on February 09, 2011, 04:50:45 AM
I had one Dr say in exasperation, "Well what do you think you have?"
I replied, "Dry Eyes, dry nose, dry mouth, dry skin and dry a$$. Can't you figure it out?" I walked out of his office. A few days later I got a letter in the mail... Could it be Sjogrens?
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: bloodless on April 01, 2011, 12:27:20 PM
Joe, that's funny! Having the doc ask you what do you think you have is pretty bad! Don't you wish you had a recorder when doctors say something really stupid? I'd love to send it back to them in the mail. Especially when they say the opposite of what they said at your last appointment!
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: amk922 on April 01, 2011, 06:20:57 PM
One of the worst and from my husband no less (he really cares, just doesn't express it very well):

"If it were me, I would be trying a lot harder than just seeing doctors and taking pills all the time."

Yep, gotta love him.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: Lauralou on April 03, 2011, 06:41:07 PM
I just got diagnosed and thought I'd let HR know in case I start acting a little "off". Well, more than usual I guess now.

And I got "are you sure it's not just hormonal?"

I'm 29. I don't think my hormones aren't exactly raging these days.
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: angielyn on April 03, 2011, 08:44:30 PM
I've heard it all and was just sitting here reading some of these to hubby telling him just how STUPID they all sound to us  ;D It's ok, keep sounding dumb so we can keep laughing at them...

I love the "Get better soon" Um yea sure I'll try that tomorrow.... hubby got us bikes roflmao... yea ok I'll give it a try but when I can't get out of bed for 2 days he's sooo going to pay for it lol BUT I will try it... I know I can't handle the heat so we'll have to do it near sunset or something. I do love being outside when I can deal with the heat. I love going for a bike ride. I just don't know if my legs can do it anymore  :(

IF I feel up to it, I'll try it if not then I won't. I like fishing too... So, if you wanna go we go night fishing haha
Title: Re: The top ten worst suggestions commonly given to someone with a chronic illness
Post by: sass on April 03, 2011, 08:47:48 PM
When will you be well?!?  ....?!?!?!

Oh good, you finally found out what's wrong with you!     well, that was supportive!

You think it is because you are overweight?   hmmmm

Is that why you are so short?....nope, it is why I am overweight.

Where did you catch it from?... then quickly, is it contagious?

Why don't you try line dancing?....hahaha

Have you tried yoga?.....I can barely walk at times, you want me to twist in a what?

Why do you have it?...just blessed, i guess?

You need to go to this doctor I read about!......oh, okay, one more for my collection

Drink Vinegar!...yuk, now that's just wrong

Coffee enemas?Will cleanse your system!...no this is wrong!   

I just read this article in Vogue! ..well i will fit right in, not!

Well, at least it isn't terminal!!   this one sometimes makes me feel better , sometimes not!

Think Happy Thoughts!!!!!!....sunshine, bluebirds, pain, oceans,flowers, pills, soft breezes, choking,  housework, drowning pain in oceans of pills....haha

and my favorite,  You have to use the power of positive thinking and just keep going........(what do they think I have been doing?)

Think I will stick to Prayer!!!!     -sass-