Author Topic: The top ten worst suggestions commonly given to someone with a chronic illness  (Read 33228 times)

Shani

  • Guest
Love this, it's hilarious but then yet so very true!

maroza

  • Guest
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.

marilyn143

  • Guest
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 :-*

Rhonda

  • Guest
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.

DSPeter

  • Guest
Bloodless and Daisy1234,

I have heard them all since my dx in August!!!

Justdave

  • Guest
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.


bloodless

  • Hero Member
  • *****
  • Posts: 897
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
I miss the good old days. Things were more like they used to be back then.

Sjogrens, Lupus, Fibro, GERD

LizPetillo

  • Guest
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. 

meow

  • Hero Member
  • *****
  • Posts: 558
" 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!
I refuse to tiptoe quietly through life, only to arrive safely at death's door.

Sjogrens, Hashimotos, CFS.  Also, fast approaching CRS Syndrome ;)

bloodless

  • Hero Member
  • *****
  • Posts: 897
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?"
I miss the good old days. Things were more like they used to be back then.

Sjogrens, Lupus, Fibro, GERD

slang

  • Guest
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. :-\

Rhonda

  • Guest
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.  :-)


meow

  • Hero Member
  • *****
  • Posts: 558
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 ."
I refuse to tiptoe quietly through life, only to arrive safely at death's door.

Sjogrens, Hashimotos, CFS.  Also, fast approaching CRS Syndrome ;)

bloodless

  • Hero Member
  • *****
  • Posts: 897
Oh well, if our chi is outta balance, by all means how do I balance it?
I miss the good old days. Things were more like they used to be back then.

Sjogrens, Lupus, Fibro, GERD

puppybreath

  • Guest
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