I HAVE TOTAL BODY RSD. MY PERSONAL FAV IS THE ONE “BUT YOU DON’T TELL US YOU ARE IN PAIN EVERY DAY SO HOW ARE WE TO KNOW?” OR”YOU CAN’T BE IN TOO MUCH PAIN BECAUSE YOU NEVER COMPLAIN ABOUT IT” NOW WHY IN THE WORLD WOULD I DO THAT…WHAT GOOD WOULD IT DO TO COMPLAIN EACH AND EVERY MOMENT OF EVERY DAY THAT I HURT OR THAT I’M IN PAIN…WILL IT CHANGE THE FACTS OR MAKE IT BETTER? NO IT’LL ONLY MAKE ME SICK OF SAYING IT ALL THE TIME.
SORRY FOR THE ALL CAPS BUT I HAVE RSD IN MY EYES AND IT TOO HARD TO SEE THE SMALLER PRINT.
BLESSED BE…DE

As I’m going in for a CT scan to rule out any other causes (last resort by my doctor) the tech tells me “Oh well you’re in university, and that’s very stressful. You really should go find a good support group, or a therapist even. They have free ones at the university, they’re really good I hear! Here, I’ll go get you the contact information…” Lady… my doctor sent me for a CT… don’t you think she ruled out stress and depression first? And when did you get your MD or PhD to diagnose me with depression?

I tend to get a lot of “but if you can go on the internet, why can’t you work in an office” stuff from even my family. Me spending five minutes here or there, doing nothing more strenuous than reading is a lot different than an eight hour day. I can’t sit for that long without hip pain.

I’m also get lose weight comments. Yeah, walking more than five minutes makes me limp and more than twenty usually sets off a fibro attack.

I also get “if you’re home all day, why isn’t the house spotless” Well, if I tried, I wouldn’t be able to move or function. So, no.

Just the other day when I was at my Rhuematologist’s, I was seen by an RN first, which was never the case before, I suppose they’re changing their practice a bit. She asked me what the reason for my appointment was and I told her that I had some questions for the *doctor* regarding changing a few things around. She looked at my chart, the films of my bilateral hip displaysia and my having POTS, Fibro, EDS and the hip dysplasia and literally said to me, who is unable to walk further than a couple feet without severe shaking in my legs, looked me straight in the face and said “well, EDS isn’t a debilitating disease.”. Then proceeded to make me go through an entire exam for EDS as well as Fibro. If you are a medical professional, even if you think something like that, you keep your mouth shut. There are types of hypermobility syndromes that do not cause pain, and then there’s what I have, in combination with everything else. After her “exam” she stated that she would go “track down” my doctor for me. Two hours later he walked in, unaware that I had been there for so long.

as funny as it might seem, i’ve tryed most of peoples stupid suggestions. lol eat better, lose weight, try herbal stuff, acupuncture cures all, u name it i tryed. and i must say, besides my multitude of scripts, the suggestion of having sex more is the only one that kinda works. or at least puts me n a better mood to want to get up and do laundry or take a shower after 3 or 4 days. lol go figure

If I got the, “I’m so tired; I think I have what you have,” comment, I would seriously have to refrain from punching someone in the face. 🙂 🙂
Exercise more–Okay, and are you volunteering to take me to the pool three times a week since I can’t drive?
Eat healthier–Okay, what do I eat when I can’t swallow anything without difficulty, have kidney stones galore and have celiac disease? Would you like to go to the store and then help me prepare the limited stuff I can eat right now?
If you weren’t taking all those meds… –Let’s see, would I rather live with depression, in excruciating pain, be unable to breathe, have seizures, etc……or maybe I’ll just keep taking my meds. Oh, and does that mean that, if I stop taking my meds, you’ll take me to the hospital at ungodly hours because of these problems that my meds help to control?
If you would focus on something else–yep, that’s why I’m going to school to become a mental health professional…that’s not helping others. LOL! Oh yeah, and did I mention how school takes way more out of me than I have?

Yeah, thanks for allowing the gripe session! It was really helpful to read this article and these comments…I know I’m not alone. People think I’m weird when I say that my blindness is the easiest of the seven chronic conditions I have to deal with. *gentle hugs to all the spoonies out there*

NativeRose

In response to mortadella1985
Kind of off topic but: I have eczema and a friend in high school was forbidden from being around me when her mother found out because she (the mom) was convinced I’d give my friend eczema… That was really annoying.

I have heard a lot of these. The one I run into most is “Have you ever thought it’s because you’re on too many medications?” after I just explained that I take each medication for a specific reason and all of my problems started BEFORE taking the medications and that without some of them I could DIE. Thanks, I’ll just stop them all now and see how it goes.

I have exercise induced asthma. It first started developing in high school and it wasn’t very severe but it was very persistent (I got so used to being short of breath I didn’t even realize it was getting worse until I had a bad asthma attack and the medication that fixed it made me realize that I hadn’t been breathing right for over 3 years). Anyway, I started developing a whole bunch of other things in high school too. My parents’ favorite thing to tell me was “You just need to exercise more” closely followed by “It’s all in your head” and “You’re just being rebellious” (WTF?? rebellious??)

Glad I found this list and replies…I needed a good laugh today! I have heard SO MANY of these!!!!

Thank you so much for making my day! these are great and I have also heard most of them but usually just looked away in disgust but now I will have answers to all “good intentioned” idiots out there. My favorite one for me was as I’m laying on a gurney in the emergency room with my heart monitor all over the place and my blood pressure so low it was setting off the alarms and having gone in there in the first place for gaining 10lbs of water weight overnight, the doctor came in and said “Gee, you don’t look sick” his dx was to push more fluids with an IV, I called him out on it and he didn’t know what to do after that, I guess he was just stunned that a lay person knew more then he did, I loved the look of surprise on his face and I was laughing inside the whole time, made my day. After that I refused treatment and left the ER vowing to never go back.

Oh yes, the supplements. The company that sells this one for a mere $160/month but the full program is only $900 and cures (CURES!) people ALL OF THE TIME!!!!!

Or calcium. Drink more milk. Give up dairy. Go vegan. Eat more fish. Don’t cook your foods. (uh huh). Don’t use plastics of any kind. Don’t eat anything you didn’t grow yourself. (Uh, yeah.) Do pot. Don’t take any meds of any kind. Have they checked you for (name whatever disease Oprah, or Dr. Phil or Dr. Oz talked about that day)? No dairy. No wheat. No corn. etc., etc., etc.

Work. Don’t work. Walk more. Walk less. Swim. Don’t swim. Never overexert yourself. Do what you want to do. Rebuke your illness as from the DEVIL. It’s God’s will.

Yes. Thank you for your thoughts. I will give them the consideration they are due.

I personally like, “if you didn’t take so many tablets and you got so more excercise you would be fine”. Fabulous, you’ve solved it Doctors have been trained for years but you have really hit the nail on the head. The fact that with FM you kind of need a certain amount of painkillers just to get out of bed in the morning let alone the 20 mile hike up the closest mountain is something they must have missed in the school of medicine you trained at.

I didnt see this one, but if I repeat, I apologize now.

There is nothing wrong with you. You are just lazy! (Lazy? I live with three grandchildren between the ages of 10 and 13)

One of my favorites is, “You’re not trying hard enough. You just have to hop out of bed every morning and face the day.”

Not. Trying. Hard. Enough.

What-evah!

Another one: “It’s probably yeast.”

??? ooookay.

Love all the comments! How about when defending why you can’t work, hearing back, “What do you do all day?” or “I bet you can do more than you think you can! You need more confidence!”… or hearing a lame attempt at an inspiring story about how someone else they know lost their leg or something & still can work. I deal daily with the “brain fog” of cognitive impairment, so people just don’t understand how limiting that is.

I just adore the coments! Lord knows I need a laugh. My
latest favorite came from my husband who says” if I would just
stop resting so much i would have more energy”…Ok then!!

A bit off the subject, but in the vein of Glinda’s comment:

A co-worker was admiring my personal handicapped space inside the plant and its amazing proximity to my work area. I’ve got a degenerative lung disease, and look pretty good, even with my sweet pink walker!

This co-worker says to me, “you get to park here everyday? Wow, you’re so lucky!”

You just have to take it all in the manner it’s meant, smile on and in this case, I had to agree.

I grew up with: -‘It’s all in your head, stop telling yourself stories’, after I had my first child it was: -‘It’s postpartum, just get over it’. When I suddenly lost over 60lbs and hard, painful lumps appeared on my ankles the doctor said: -‘ You know dear, sometimes when you loose a lot of weight you discover bones that you did not know you have’ and to add to this, while hospitalized, the “big cheese” said to me: -‘It’s the stress of your family situation’.
So my dear comrades, I guess that I could have my personal 5 best with this wonderful last statement from my then husband: -‘You are damage goods… my punishment’.

I have a rare kind of Crohn’s, the kind that took 26 years to diagnosed and that took 10 years to get under control.
In my new life, with competent doctors and loving new husband, I am a force to be recon-with!
I love to accompany friends, family and anybody that needs a voice during complicated doctor’s appointments.
I am waiting for the day an idiot doctor will say a phrase like: -‘You are too pretty to be sick!!’

Today from an acquaintance:”Well you are gaining weight really fast so you need to go on some kind of high protein diet” My reply “Well since the weight gain is from high dose steroids and they are necessary to treat enlargement of my spleen I think a high protein diet may not help.”That lead to a long lecture about the danger of using steroids as if I am buying the off the street. I ended the conversation by saying “look the steroids lower my immunity and so I should get away from you before I catch your stupidity.”

Milissa wrote: “You just need to lose some weight.”

I KNOW, RIGHT? And then they carry it further: “It’s a shame, because you have such a pretty face!”

YES! ISN’T THAT SAD? It’s so unfair! I’m fat and I hurt all the time! It’s a shame I’m not really ugly too!

BWAHAHAHAHAHAHA~

Syler

another one “It’s the hormones in meat.If you eat hormone free,free range meat you will get 100% better” I am a vegetarian and have been since before my diagnosis,but thanks for the input!

My worst suggestion came from my family doctor. He suggested that I could go get myself a stationary bicycle to deal with my weak legs. I told him no, that wasn’t going to help since my weakness was getting so bad I had a real fear of falling when going down stairs and had to hang on to the railings on both sides for safety. I have since been diagnosed with Lambert Eaton Myasthenic Syndrome, a neuro muscular autoimmune disease in which the communication between nerves and muscles is hampered by antibodies. Stationary bike! Nice!
Deb

You forgot, “It’s all in your head, your probably just depressed.”

LOL to all of these but you forgot to include the one I loathe the most:

“You should get out and take long walks, exercise more and it’ll all go away.” (Between scoliosis and leg length difference, that advice inevitably brings on six weeks of bedrest when I’m stupid enough to try it.)

I suffer from bipolar disorder and the only thing that is missing on this list is the suggestion that “Don’t you think you’re a victim of the medical conspiracy?” Otherwise, I’ve heard all of these, too.