Stupid Things....& Questions....

[MamaRider]

What are some of the stupiest things or questions people have asked or said to you about your illness??? Just wondering if I am the only one that is starting to become really sarcastic about some things.


My all time fav===You don't LOOK sick.....
or
Why can't you.......


This has gone on a long time-haven't the Drs found a cure? Or a pill?

ect .

[MamaRider]

Oh yeah and also I forgot this one==


Have you ever heard of Maunchousnen (SP?) ? (Like I am making myself ill)
Or-You are just being a hypochodracic (SP--again) Like I am faking this for 20 plus years.

[GardeniaGirl]

I quit mentioning the word "arthritis" about 4 years ago -- that word would alert the majority of people I was talking to to mention their "uncle's sister's cousin's step-mother's niece" who was taking some supplement that had totally cured her arthritis.

that, or they had gone to a chiropractor.

Now, I don't mention anything at all to casual acquaintances...I am just not interested in the feedback, frankly. I find those conversations draining.

When I am getting to know someone and they are becoming a friend, that is when I will mention I have an immune-system disorder.

I find that if I describe it in those terms, people don't understand what is wrong with me, so they can't jump into giving me all sorts of advice.

And that is what I prefer.

[houghchrst]

I have a brother who is a firm believer in walking it off and one who for some reason thinks all physical ailments are temporary. That they will magically go away. I don't talk about my physical ailments to the first brother unless he outright asks and the second forgets what I tell him as soon as I tell him. So the next time I see him he asks me about it again. Neither one of them are insensitive and have never said anything bad about me and my problems they are just uneducated.

[Mark N]

GG, like you I don't bring my disability up in conversation but when pressed I say I have a spinal disease as any talk of a back problem or back surgery is automatically turned into blah blah blah and it will help you to. A bad back isn't accurate any way since it involves my bowels, legs, feet, heart, etc.

MamaRyder, mine would have to be either 'you are moving much better so you must be okay or the time my MIL that said ' Why are you still in pain, I thought your surgery was going to stop your pain.'

[Lil E]

The one I really like is "I had a really bad backache one time and had to take prescription Motrin".

[cindybear]

the one I hate. Your so lucky, you get to stay home and collect money for nothing,,That was from a former employee,,I just walked away from her and I won't reckonize her to this day. Yeah, lucky in miserable pain,,I would rather work the job I love anyday !! Cindy

[Cervie Barb]

Yeah, I love it when they say some OTC arthritis formula works so great. The bigger meds I'm on just keep me from committing Hairy Carry (sp?)!

If it comes up, which it usually does after some insensitive jerk say well why aren't YOU working, I throw out the big words to hopefully keep them at bay. I have a progressively degenerative spinal disorder of a sensitive nature in relation to the spinal cord...

It's cold out there, Mamarider! Stay by the fire with us! Take care, and don't let it get you down.

[BrokenBladder]

My favorite is when I use my Medicare card. You look too young to be on Medicare!! Arrrg!!!!

[Kathi49]

MamaRider,

I like this thread...good idea!

Okay for me...and I am trying to remember or think back but here goes...

1) FROM MY NEUROLOGIST - "With two cervical fusions you should be feeling so much better and raring to go!" BUT...she was teasing as she really HATES fusions. She was actually being sarcastic.

2) FROM AN EX-COWORKER - "I have Trigeminal Neuralgia and Tylenol Arthritis works for me!" (Say what!!????)

3) FROM MY MOM - "You are picking and choosing what you want to do!" Well, hello, duh, yes I am! BUT...I went over to her house in severe pain and said...okay, let's go. You want me to go to this meeting with you so bad, so here I am. Of course when she SAW how much pain I was in she cried. I didn't mean to do that. But I was ticked! So, now she knows to ask first if I can do anything.

4) FROM A DAR MEMBER/LEADER - Okay, I shouldn't talk about her but she upset me. I told her I couldn't do much more volunteer work since I was having another fusion. She says, "Well, we all have medical issues!" It didn't matter to her that I was getting ready to have another fusion, knew nothing of my neck because I had never gone into detail and had already edited the Yearbook for them for a year. So, I put my volunteer time in...guess it just wasn't enough..DUH!!! The same thing happened to a friend of mine, also a member and she was ready to have an ankle fusion. We both couldn't believe we would be hounded so much. So, we were both upset and :mad: !

Anyway, that's about all I can think of for now. I get the standard...but you look so good comments as well. Which is nice but I know how to smile and still be in pain. :rolleyes: And I have said before I really don't go into details unless someone is genuinely interested. Or, I could put it a different way...if I can do something, I will say so. If not, I have learned to just say no I can't.

Oh, but I can say without a doubt...the most supportive, compassionate person besides my husband is my own PM...at least he "gets it". :)

Oh, and Lisa...speaking of looking young. This is funny. Yesterday, I was trying on some jeans in Von Maur which I did NOT know was really the "teen area" LOL! The store didn't have the area marked so I thought I was in Misses. OMG! I was laughing so hard. I don't have the "booty" that a teen would anymore so the sparkle on the jeans pockets was, well, kind of NOT up and out if you know what I mean...more like hanging down LOL! So, when I came out of the dressing room laughing this clerk says, "Maam, would you like me to show you where the jeans are that will fit YOU!" My husband busted out laughing and I said, "Yeah, I know...I am NOT 18 anymore!" And he says, "Who is?!!" Okay, so that made for a nice day...more or less being told...you are too old to be wearing THOSE kind of jeans LOL! I think I should call my niece; they would look GREAT on her. :) Sorry, for rambling but when you mentioned Medicare it made me think of age.

[911]

kathi , i lmao at your last coment !!! dave

[Kathi49]

Dave,

Heeee! :D

Geez, it is almost as bad as a clerk at the drug store telling me before Christmas, "Be sure to bring your GRANDCHILDREN with you next time for a picture with Santa!" Heck, I don't even have any grandchildren yet LOL!

But check this out...those darn jeans were $215.00!!! I wasn't going to buy them; just wanted to see how they looked and I sure found out! :eek: :D How do these teens even afford them?

Forget it...I am sticking with Kohl's Levis or whatever. :)

[BrokenBladder]

Kathi,

LOL!! I woke up this morning and your post about the jeans was the first one I read and it made me laugh like crazy!!

I'm with you though just give me some comfy levi's and I'm all set. Now for the bad part, I can't get my weight back so I need to shop in the little girls section. Ever seen an older woman wearing jeans with the cute little things they put on the girls clothes? It must look like I'm trying to go back to my childhoold, LOL!!

Oh and jeans for $215.00!! Who are they ripping off? If I had a daughter I'd say let's go to Walmart!!

[bewolf]

This type of thread comes up every so often and I always like to see what others have to say to people who don't understand.

My favourite response is in my signature.

Wolfie

[MamaRider]

I think the big problem for me at least, is I ook able-bodied. I shuld be able to run races the way i look at times, but then, the fact is I am heaviy medicated at all times (175 of Duragesic is sorta large, at least that is what I have heard, and I use Diliudid for BT. Plus other very strong meds) It has gotten to a point I have pretty much given up going to Church, of all places. I ust feel awful aout it but, there you go. Certain people said things that hurt me, and I know I need to sit down with them and my Pastor and clear the air(He knows about me, he visits me in the hosipitl, all the time, and it always takes me by surprise, he is so great, I cry thinking how much I miss him) But going to church is so stressful for me, I over medicate to go, so I figure it is best to just NOT go. (OK My problme is with the single Pastors' Mother.) She just doesn't get my illness and makes these comments that I know She doesn't think are snide and hurtful, but, even my hubby and kid have heard them and agree, she is saying things outta her butt;)

Other things that get to me, are people that are selling some SNAKE OIL that is gonna cure me and I just HAVE to try it.It is usually someone from church and how do you say no to someone who has their heart in the right place, but is selling garbage? No, I don't need to take your veggie pills, or try this, or go to your Chriropracto(sorry folks, just don't believe in Chriro...Years ago, DH was in -yet another-bike wreck -worse than this one- and the guy in the other bed from him was having his......well.....balls removed ,because a Chiro did something wrong and messed things upand he lost circulation to his,well you know, and they HAD TO CUT THEM OFF> Ok, well, maybe I don't have THOSE to lose or have cut off, but it turned hubby and I off to Chriros ever since. So no no no on some ones great Chriro.

I hate having to explain why I cannot take part, or why I am not SURE if I can take part in something, so, I quit even volunteering. I miss it. Hubby is pissy about why I don't want to be part of a Home Study any more, but, I never know how I am going to feel any more. And the truth is, I have gotten t he point, I would just rather stay the heck home. It really angers my family that I don't want to do much any more, but, the price I pay for doing anything, is too much.

I have lost all my freinds. They gave up on me, or maybe I gave up on them(?) I am sick and tired of trying to explain that I have things wrong with me that are NEVER going to get better. NO they may not kill me. But they hurt just the same and they limit my life,my laughter and my love life.:(

[ejskennedy]

I spent the first few years of cp very confused about how I was "supposed" to act. Even if I was having a "good" day, I didn't live up to that because it was confusing to me and everyone around me, I felt. Especially to the hub. Well, now I just do what I feel when I feel it. I do as much or as little as possible at the moment. I used to push and push myself (and pay for it) and now it's "slow and steady wins the race." I also look "ok", but I also make an effort to look put together. I have 2 small children, so I have them to think of. I think it is harder for my family (lots of sibs) to deal with, never knowing what I'm "up to" or not. Oh well--I guess that's a little off topic.

Things that've been said to me.
Neurologist: there's just no good reason why you are having head pain. (No kidding!!!)
from oldest sister: If you were Julia Roberts "they" would've fixed you by now.
from everyone: Don't worry. It will get better. God doesn't give more than we can handle. (Now, I love God, but he never said we didn't have to suffer!)
from myself: Stop being such a sissy!
from my kid: I wish I knew you before you had headaches. (he was 2.5 when it started. Doesn't that make you cry?)
from hub: maybe you're depressed. (ya think?)

Hope somebody smiled....

Erin

[Mark N]

Erin, I couldn't help but laugh at your list.

[BrokenBladder]

Erin,

You made me think of a few other things I've been told.
1. My best friend~~You just need to get out more!!
2. My two son's both are teenagers~~Are we going to get this? I think they might be scared.:(
3. Hubs~~You would feel so much better if you would just sleep!! Wow ya think?

LOL!! This is a good thread!!

[Lil E]

Remember, it is better to look good than to feel good!

[brians2000]

My sister in law mentioned her brother had to get some type of growth cut off his arm and then she said something like he was in as much pain as I was when I had 14 vertebra's (T4 to Pelvis) fused a month earlier.

About three months after the surgery she admitted to me that she or my brother didnt believe I could still have pain after three months and I was faking it.

One of my friends wife told me I should go see her Chiropractor because they relieved her pain caused by her large breasts.

One of my old friends told me they also see a chiropractor and it has helped them. They didnt understand why I continued to have pain after surgery. She also told me I should have seen her Chiropractor instead of having surgery since it didnt stop the pain.

I have stopped mentioning anything about my back problems because no one seems to believe I still suffer except my parents and a few close friends.
A lot of my friends think I am addicted to pain meds since I have to continue getting them monthly from a doctor.

[slipnslide]

Oh how true!!!!....LOL

I have to agree with everyone!

I've heard most of the remarks at least once and I've only been dealing with this for a short time compared to most of you.

I think the saddest two things said to me were by my daughters:

1. My younger daughter (now 14), who got whiplash in the same accident I was hurt in, saw the doctor's notes where he wrote: 12 yr old female presents today, standing comfortable, in no apparent pain....etc. Well, that set her off!...LOL She could not believe how far off his description was as compared to how she was that day. She asked why did the doctor lie?:( She still has bouts with headaches and neck pain to this day that prevents her from wanting to be with her friends.

2. My older daughter (16) had mentioned to me many times how she disliked the fact that I'm no fun anymore and I don't do anything but sit around in pain. I felt so guilty. Then two months ago my daughter wound up being in a car that was rear-ended at a light, and she had been bending over to pick up her cell phone off the floor when they were hit and her head slammed into the seat in front of her. She was taken to the ER the next morning with head, neck, and shoulder pain. They did MRI's and Xrays. Once it was all over and she was released, she admitted to me that she cried for an hour because she felt so bad for saying the things she had said, and that she could not imagine being in pain like that. It's an apology I wish I would never have received.:(

[B89]

I hate it when people try to come up with a job I can do. My friend said to me recently,"You should deliver drugs, get your own business". I have stopped calling this friend, he just would not let up.
I had another friend ask me what meds I was on because his back was killing him, when I talked to him 2 days later he was in no pain and back to normal.
I find I am avoiding being around friends now, I just can't take it anymore. I stick to family, they are usually good about not asking stupid questions.

[911]

how about this ,,,,,,,,,,,,,,, your a drug addict ??????????? that one really hurt me ,,,,,,,,,, dave

[suede]

Good Thread MamaRider, I was sorry to hear about PR accident and hope he is feeling better, sorry I didn't post to you sooner, I have been rather with-drawn lately..

I have to say I have heard most of these remarks first hand also.
Fact is I really don't have any friends left except for a couple that we talk on the phone occasionally, one lives in Texas and the only one that really gets it, she knows I was always a very active person and always worked hard and had a lot of fun, she gets I wouldn't choose to live like this.

My pet peeve one now is a brother I haven't been in touch with since before this happened and got back on to speaking terms with at one of my
other brothers funeral this pass summer.

"You know we all ache more, it is just part of getting older"!

Bewolf, I love your come back, I will have to remember that one..

My grand kids all refer to me as the grandma that hurts all the time, the oldest always tells me he wishes he knew me before.

Linda

[tiggers]

My daughter said a year ago "shouldn't you be better by now?"

Noone gets it do they?

We need blinking signs on our foreheads saying what is wrong!!

I also had the "must be nice to get paid for being off work" from a person
who is now doing my job.

How about "you should be able to babysit, all you have to do is sit there", this was about babysitting twin 3 yr olds.

[Diandra]

Hi,
Good thread.
Like B89 said, people continually coming up with job ideas you can do, like you just aren't working because you have not found the right job. My SIL is continually giving me ideas....travel agent...."you like travel and all you do is sit at a desk and computer all day"...graphic artist..."you are so creative and you love computers".

From another a##hole SIL, "wow, you are so lucky...if you get a job under the table and collect your disabililty benefits you would have tons of money". I completely lost it after that one(or as my husband has lovingly come to call my losing my temper with his family when they are so insenstive,
"Diandra pulls the pin and lobs another grenade into a family get together").

My all time favorite, "maybe you're just stressed and need to have more sex." No kidding....from an former friend.

Love, Diandra

[Kira]

My mom actually thinks that I will be able to do my residency and everything, as long as I stop taking all of my medications. She is convinced that I am "sleepy" from my meds, and that I can handle the mitochondrial stuff by just eating consistently (six small meals per day, four hours apart, even at night).

What she doesn't get is that I'm usually not laying around on the couch because I'm "sleepy"... I can be wide awake... it is that my whole body is just bone-tired, like you feel after exercising hard, because my cells can't make enough energy to function. She even blames my meds that just plain COULDN'T make you sleepy or addicted, like Prilosec and stuff.

I think she is in serious denial about the fact that I recently had to quit my extremely cushy, easy job and withdraw from the only class I took last semester (a 3 credit online course). I mean, if I can't do that stuff, how in the WORLD am I going to magically be able to work 100 hrs a week as a resident?

And, if I stop all of my meds, I will just hurt more and have an even more labile mood, and I'll be an even bigger mess, and I will be even less functional.

I know it is because she loves me and is having a hard time facing the fact that my whole world is crumbling around me because of this stupid disease. But, if she can't face it, how does she think I feel?

It doesn't help to pile guilt on me, because believe me, I can make my own pile of guilt just fine.

[Mark N]

Since people don't understand and have to open their mouth to show their ignorance I say we all pick a day we will stop our meds, becoming raging lunatics for a week and show them what it would be like without our meds.

My mother was always caring about my condition and meds but worried about becoming"addicted". One time she saw me without my meds and the terrible shape I was in that night. I haven't heard the addiction issue any more since I told her that is my life without my meds.

We can't make people understand so it is nice to have this place to let it out.

[Peter B]

Great thread.
Even though I'm 45, the level of ignorance displayed by so many people still astounds me. It doesn't make me feel very good about the prospects for humanity. Even though many of these responses were pretty funny, they really aren't funny at all.

Pete

[alex44]

I simply do not talk about my medical issues and run like H--- from people who want to tell me theirs.
alex44

[A.K.]

My mother has this thing about going into deep denial when someone she loves is ill, especially if it is chronic or terminal. Great example, her father was bed-ridden for over two years before his death and she was convinced the whole time that he had decided to just become lazy and let her mother wait on him hand and foot. Never mind this vibrant, robust cop that weighed around 300 lbs at 6'5" suddenly lost down to less than 200 lbs - strange side effect of laziness, huh? Two days before he died he was hospitalized for a leg amputation and still when he passed away she said, "I didn't realize Daddy was that sick." So you get my point. He died about ten years ago.

I am going thru the same thing with her again with my chronic pain. She says, " I don't understand why you don't just get to feeling better." Another one is "I refuse to believe that you really need to be taking narcotics, have you tried taking some Tylenol to see what that will do?" Can you imagine all this emotional support!

She lives about 2 1/2 hours away from me so I am telling her on the phone the other day (we talk at least every other day) that my pain has been very, very bad and I have not been able to walk for several days due to it and the leg weakness so I have been in bed. I told her this maybe two or three different days in different ways and she says to me, "so are you able to get around okay?" and I said, "well I can get to the bathroom and when I absolutely have to I make it to the kitchen but other than that I am in bed" and she says "but what about running your errands, are you able to get out and run your errands okay?". Now I try to be respectful of my Mother but I lost my cool a little and did actually yell at her, which I am not proud of. I said, " Mother, how in the world could I possibly be out running errands when I have been in the bed for days due to my pain?" She says, " Oh well....I didn't understand that. Do you need me and your Daddy to come and run errands for you?"

DUH....No Mother I need you acknowledge that I am not well and I would like to have you here with me not out and about. What in the world could I possibly do to get that across to someone so deep in denial?

[Cervie Barb]

Boy, I don't know AK, but I think she falls into that catagory of "some people just don't get it"! And, my mom would have been the same way if she'd lived to see me like this. I can just hear her now - "Pull yourself up by your bootstraps" and "When the going gets tough, the tough get going". She probably should have been a drill sargeant. lol.

God, I miss her! What a pain in the butt!

Now, go call your Mom and apologize for yelling at her! Just kidding. Really. It know how hurtful it is when the people who care about you the most don't understand. It's that old school stuff I guess.

Take care.

[Sara1979]

My sister tells me it is a punishment from God because I do not pray. My problem is congenital so what I didn't pray enough in the womb?

I also love the already mentioned "Oh, Motrin or Tylenol work for me. Have you tried that?" No, I went straight to surgeries, PT, Pain Management and Tylenol never crossed my mind. Just went straight for the long hard road.

I also love the "I have pain but I have learned to ignore it." Yeah, sure my knee hurts from time to time and I can ignore it but the feeling someone drove a hot pick over and over again into my neck can't really ignore it.

Also a fan of the "You just need to get out more." Sure, I chose to have to limit my activities. At 29, it is really what I want to do with my life. That pretty much stopped after I let family members drag me around all day and didn't say a word and ended up throwing up and shaking and unresponsive at the end of the day.

Most common question from strangers "Your neck looks really stiff did you get into a car accident?" From an old friend that somehow didn't notice my facial assymetry except when looking at pictures. "You gotta see these it's hysterical. How do you make one eye look about 2 inches below the other." Thanks for reminding me that my neck looks funny and my face is slightly disfigured.