The Rude Question

[The Historian]

How do you deal with rude questions about your scoliosis? I had a complete stranger come up to me in a spinning class and ask "Excuse me, but what's wrong with your back?" I'd never seen the woman before, and since she was new to the gym and the spinning class I doubt she'd seen me. I mumbled some polite reply about scoliosis and left it at that, but I was bothered by it for the rest of the day. I realize that when I am dressed for exercising or cycling the curve is noticeable, but I never thought my six per cent was so noteworthy that a stranger would approach me about it.

[Singer]

A look of surprise followed by a moment of heavy silence usually does the trick ;)

I once had someone say to me in a shoe store: "My God, you're short!"
I was so shocked I actually burst out laughing.

[SandyC]

The Historian,

It is rude, but what an oportunity to educate someone about scoli. Someone in her family may have it and not know what is wrong.
SandyC

[rainbow2010]

M daughter has run into this problem at dance. She tells the people that they are hurting Sir Francis' feelings (her name for her donor bone). That usually opens the door to explain about scoliosis and how it is not contagious, but they could develop it. She went to a new family doctor who had never meet a scoliosis patient. the nurse parct. was very interested and my daughter let her touch her back. She tought it was neat to be able to feel the top of her rod.

[Karen Ocker]

When I was 21 and a young nurse--I had an old form of scoliosis surgery 7 years before that--which gave a modest correction but with a large residual rib hump--, a patient asked me what was wrong with my back and couldn't it be fixed? I did explain the situation.

Another time my best friend said my back didn't seem to bother me but it would bother her if she had it. I told her the truth: it did bother me and nothing more could be done at the time--in the 1960s.

My heart doctor showed me HIS scoliosis after seeing mine! :cool:

[txmarinemom]

Historian, I'm sorry something a stranger asked upset your day.

I tend to agree with some of the other responses that *maybe* she had seen the condition before - and just botched the delivery of the query in a major way.

Perhaps she was just curious for other (nosy) reasons (which I just find morbid).

I don't know what has happened to manners in our society. My Momma would've slapped me silly (and my kids were raised under the same rule) for being so tactless after about age TWO.

Honestly, I'd like to believe some people aren't just a**hats, but the truth is they are.

Have a sensational, SO over the top it's ridiculous story ready next time . Something like:

"On my yearly pilgramage to the top of Everest last year, would you believe I tripped 1000 feet from the bottom on my shoe strings??" ...

or ...

"It's such a long story, but you should've seen what I did to the grizzly!"

and the always effective direct turnabout approach ...

"I'm not entirely comfortable answering such a personal question from a total stranger. I'm interested why you asked.".

Deliver the line with a serene smile.

The last option at least gives her a chance to elaborate if she DID have a personal reason to ask (and was merely having a lapse of brain/speech connectivity); if not, it's guaranteed to make HER feel small for asking.

Best regards,
Pam

[LindaRacine]

Hi...

To be honest, I'd much rather have someone ask about my back than to look at me and be repulsed. I don't think a person would ask if they didn't want to get to know you. I do, however, understand, that many people are just more private than others.

Regards,
Linda

[CHRIS WBS]

I’m just dumbfounded that anyone would even notice a 6° curvature in someone’s spine. I’ve had scoliosis since adolescence and to this day no one has ever asked me what’s wrong with my back. My own family did not know I had this condition until a couple of years ago when I came out of the closet because of the problems I began to experience.

Chris

[txmarinemom]

Chris, all curves are different. No one noticed my 53° right thoracic - even in a bathing suit (unless they knew what to look for ... rib hump, dropped shoulder, etc.) because I compensated so well.

I even managed to hide the rib hump by holding my shoulder back and bending from the waist when possible.

[LindaRacine]

Wow. I misread it as 60 degrees. I agree that a 6 degree should not be noticeable by anyone, as it's actually considered normal. Historian, if you've been told you have a 6 degree curve, and someone could actually tell, I'd see another doctor.

--Linda

[txmarinemom]

Whoops - I read it as 60° too! I'm with Linda ... 6° should *definitely* not show ...

Regards,
Pam

[The Historian]

Wow. I misread it as 60 degrees. I agree that a 6 degree should not be noticeable by anyone, as it's actually considered normal. Historian, if you've been told you have a 6 degree curve, and someone could actually tell, I'd see another doctor.

--Linda

Well, I'm told it's a six percent curve, classified as "mild". Here's what I look like after riding 36 miles.

Bike Forums Post about falling off spin bike (http://www.bikeforums.net/showthread.php?p=5768928#post5768928)
Cycling clothing is wonderful for riding, but it makes me look very crooked. But even in street clothes I look a little 'odd', as I've been informed.

[txmarinemom]

Well, I'm told it's a six percent curve, classified as "mild". Here's what I look like after riding 36 miles.

Historian, as I mentioned before, some people (for many reasons) are able to disguise high degree curves quite effectively, and lower degree curves on some are hard to miss.

Your last post confuses me: I've lived with AIS for almost 30 years, and never once have I heard a curve measured by percentile (I suspect, most here will agree ... hence most have a C, T or L curve of n° listed in their signature lines).

Who, may I ask, told you this? Although I've never heard of this methodology *either*, perhaps they placed you in a percentile of scoliosis patients: This, however, would assume they have access to the data of ALL scoli patients, and they couldn't calculate a percentile without a degreed measurement of YOUR curve.

Please elaborate if I've missed something ... I'm quite puzzled. Have you considered a 2nd opinion?

Regards,
Pam

[The Historian]

Hmm, I'm not sure how to answer these questions. Both doctors I've seen, the physical therapists, and a chiro all agree I have scoliosis, and my elevated right shoulder is of the same opinion. Curves under 20 percent from norm are considered mild, and I've seen percentages used as I have by others with scoliosis. The only reasons I'm here are A.) I have the condition, B) I want to figure out how to manage it better. It's mild, but it gives me back pain, and, as I pointed out in my initial post, I draw comment from the occasional stranger.

As for why I don't list medical details in my signature line, I decided shortly after diagnosis that I wasn't my scoliosis. My signature line is for my my signature, AKA my name. Perhaps I've come to the wrong place.

[jillw]

Historian, I've been told that curves of 20 degrees or less are considered mild which is the same number you were told...this makes me think maybe when they told you that you have a 6% curve they meant to say a 6 degree curve? That would make sense.

[rainbow2010]

My daughter looked like she was leaning off to one side. No one noticed except when she was dancing!

[The Historian]

Historian, I've been told that curves of 20 degrees or less are considered mild which is the same number you were told...this makes me think maybe when they told you that you have a 6% curve they meant to say a 6 degree curve? That would make sense.

Yes, it would. Thank you. The back and shoulder pain is real, even if the curve is mild.

[LindaRacine]

Hi Historian...

Although I've heard patients refer to scoliosis in percentages, I've never heard an MD refer to it that way.

There's no question that you look a bit crooked, but one wouldn't be able to see a scoliosis curve from the front unless it was a huge curve. I wonder if you have a large leg length discrepancy or some sort of hip issue.

Whatever it is, I hope you find a way to stay out of pain.

Regards,
Linda

[IansMommy]

You do look crooked from the front to me too. I wonder if it is actually worse than 6 degrees or perhaps a leg length descrepancy as Linda suggested. It is hard to tell from the front.

Sorry to hear about the back pain. I have back pain (not from scoli though) and I know how painful it can be.

[leahdragonfly]

Hi, The Historian,
I had scoliosis as a teenager and had a lumbar spinal fusion, so I have a large posterior scar, as well as a lot of rotation that is very visible in a bathing suit. I lap swim regularly for exercise, so I notice people staring at my back, which is very awkward, as you experienced.

One day I was at the swim center and drying off after my shower. I was not dressed yet. A woman I have never seen before or since came right up to me and asked all about my back surgery. I very briefly told her it was a long time ago and that my back is "fine." She said, "Oh good, I am glad to hear that back surgery can work, I was told it rarely works." This whole interchange, with a complete stranger, while I was naked, was very embarassing, but the lady didn't seem unkind, so I have to think that maybe she or someone she knows needs back surgery. I guess if she had pressed me any further I would have said I am uncomfortable discussing it.

Please don't be put off by the other posts. I think the others are just trying to understand your situation, so that they may offer help. You are in the right place.

Best wishes!

Gayle

[spine'[chicka]]

A friend of mine once said to me: "My back has been hurting a lot, and no offense, but I don't want to end up like you."
I was like, thanks, that's nice.

[plainjane]

I know what you mean I worked retall and their wasn't a day that went by I got some reaction to my posture. But people in this world we all are curios so just don't take it next time sweetie so personal it's a part of our lives we deal with it beauty is inside for it is what it is.

plainjane









How do you deal with rude questions about your scoliosis? I had a complete stranger come up to me in a spinning class and ask "Excuse me, but what's wrong with your back?" I'd never seen the woman before, and since she was new to the gym and the spinning class I doubt she'd seen me. I mumbled some polite reply about scoliosis and left it at that, but I was bothered by it for the rest of the day. I realize that when I am dressed for exercising or cycling the curve is noticeable, but I never thought my six per cent was so noteworthy that a stranger would approach me about it.

[Karen Ocker]

I still have a slight hump from the 100 deg curve despite a reduction. I work in the medical field so I did get asked some questions from colleagues. I decided to educate them-- since that's what they need.
One doctor, when I was a patient, said to another that I had a "winged scapular". This can come from a mastectomy if a nerve is cut- (never had a mastectomy)--so I promptly piped up it was from scoliosis and set him straight:cool:

After being examined by a cardiologist(he found no heart problems), he shows me his back (with scoliosis) and says HIS back is "a mess". Then he tells me about his child who has scoliosis. I promptly told him about the NSF Forum.:D

There is no shame in having scoliosis!!!

[LynnMarie74]

Im confused too.....saw the picture and it almost appears as if your trunk if rotated. I had a 58* Thorasic curve and a 60*Lumbar curve, and like Pam...I hid mine pretty well, except I knew it was there & I was uneven. Im now corrected to near perfect Thorasic and about 10-12 lumbar. I dont see how a 6* curve could throw your body off that much. Maybe your doc did say 60*? Or maybe you have a severe roation of the spine as well? I dunno....Pam knows LOTS AND LOTS about this stuff......I will let her do the homework on this one! :)

Either way, I agree,like everyone else, people can be rude!! :(

[scurve4947]

The thing I hate most is when I complain about my back pain, which is awful by the way, and people just laugh and say "oh honey, you're too young to have back pain." It makes me feel like my pain is not acceptable or I should just ignore it because of my age.

Historian, I hope your back problems get resolved. I understand your frustration, as I'm sure most on this forum do. I would try to see a scoli specialist if I were you even if your scoli is mild. I went to chiropractors for awhile and they all told me they could "fix" my scoli and after months of "treatment" nothing was resolved nor was my back pain gone. I have heard good things about steroid injections for temporary back relief. They can be done every few months I think. You should look into it.

Hope this helped.

[Rodsmom]

My daughter has scoliosis and we have dealt with a lot of questions while she was in the body brace (no one noticed her 40/35 curves before the body brace). She finally decided to "educate" the questioners. She did get frustrated from time to time. I could fully understand her frustration since I have a congenital deformity of my right hand that affects the lower arm as well. I have spent 40 years answering the same question and sometimes the people are rude...but my favorite one of all time was when I was in sixth grade. This kindergartener saw me every day after school, every day he would ask me what happened to my hand. I answered that question too many times to him...one day I had enough *snap --I told him that "I had washed it and it shrunk!" I bet he never washed his hands again!

Some days are just better than others when dealing with people... :) My hat is off to all of you...wearing a brace and/or dealing with a curve or two!:)

[Qikdraw]

When I was little (around 7 years old) and would go to a public swimming pool for lessons or just to splash around, I would constantly be fielding questions from children and adults. Its difficult when you're told to your face that I should not be swimming in a public pool with other children because of my disability. My mother told me she was told the same thing, that I should not be there. Its no wonder I stopped going. To this day I do not go to a public pool, nor to a beach, where I also had to put up with questions.

[titaniumed]

Brad

That would make my blood boil in 3 seconds. Reminds me of the movie "Warm springs" about FDR in the pools down in Georgia.

I wouldnt let that stop you now. There is no reason why you shouldnt be swimming at any public facility or beach.

Ed

[Wishing]

Many years ago when I was 15 and was seeking treatment from a chiropractor, his wife who was working in the office said to me "My you are so brave to go out with your condition. If I had a problem like yours, I'd never go outside". This chiropractor also told me that I never would be able to have a child. These statements weighed heavily on my 15 year old heart, and I never told anyone about them. However, because I went outside, I graduated from college, had 2 marriages (the second very happily), had a healthy son who is 6'3", three wonderful step-sons,& a beautiful baby grandson. I've also had corrective surgeries over the years resulting in some correction and improvement in my appearance.

[Qikdraw]

Brad

That would make my blood boil in 3 seconds. Reminds me of the movie "Warm springs" about FDR in the pools down in Georgia.

I wouldnt let that stop you now. There is no reason why you shouldnt be swimming at any public facility or beach.

Ed

Ed,

Yeah, I should not let it effect me, but it still does. I have sat around pools and a beach, but they were at resorts, and not really 'public'.

When told things like that at an early age it really does sink in.

[MyThots]

I do not get rude questions, the comments I hear the most, are "you know they have ways to straighten your back/spine." or "sometimes it is better to leave things alone (implying surgery should have not been done.)

I respond to the first comment with "my curve had been at about 100 degrees, it is now about 60 degrees. My spine is solid bone, there is nothing more that can be done. I was 13 when I developed scoli, it progressed rapidly, and I had surgery when I was 13.

For the second comment, I reply that had I not had the surgery I probably would be dead by now because my ribs were pressing on my lung and heart.

I am now 57 years old with arthritis in my lower back and hips, due in part, to my scoli.

I try to make these opportunities as learning experience for the person making the comment, but, in a way it saddens me.

Best wishes!

[reneemarie]

I went for a deep tissue massage at my chiropractor's office. When the masseuse walked in and pulled back the sheet she gasped and said "Oh my God, I've never seen a back so bad". The entire massage, tears just ran down my face. I told the chiropractor afterward and he was horrified and said she was young and inexperienced. I never went back after that.

[Franny]

No one believes I have a scoliosis until I show them the X ray. The nicest comment I got from a friend of my son's was, if you didn't have that curve you'd be 4" taller. Incidentally I have a 60 degrees with compensatory curve so look 'straight'. Maybe the person was just checking you out! Turn a frown into a smile and I like a lot of the comments given to you. I find keeping positive is the hardest thing.

[hdugger]

I have a problem from the other side. There's a middle-aged guy I regularly see on my walks who clearly has a curve very similar to my son's (but more advanced), which I can tell because his head is over to one side.

I've always wanted to go up to him and talk to him about it - because I wonder whether he regrets not having surgery or if he's happy he avoided it -but it seems awfully rude.

[The Historian]

I have a problem from the other side. There's a middle-aged guy I regularly see on my walks who clearly has a curve very similar to my son's (but more advanced), which I can tell because his head is over to one side.

I've always wanted to go up to him and talk to him about it - because I wonder whether he regrets not having surgery or if he's happy he avoided it -but it seems awfully rude.

I think it's rude to go up to a stranger and ask about his being 'bent.' Almost as rude as people who know you and are afraid to mention "the S word."

[The Historian]

You do look crooked from the front to me too. I wonder if it is actually worse than 6 degrees or perhaps a leg length descrepancy as Linda suggested. It is hard to tell from the front.

Sorry to hear about the back pain. I have back pain (not from scoli though) and I know how painful it can be.

My legs are of uneven length, my pelvis "looks" to the left, and my shoulders are uneven.

[foofer]

Historian,

Ah, now I remember where I noticed your "history" on this forum: The Rude question- an interesting topic- non-medical, but taps into areas we all have grappled with and most of us have hidden residual pain that we have stuffed all our lives.

The way I first learned of my scoliosis was in a modern dance class at the age of 16, when my girlfriend's mom decided we were hanging out too much and could use a bit of structured after-school time. We were way in over our heads, the teacher completely ignored us- so we felt like goofballs to begin with. The grand finale was having my friend sit behind me in the stretch portion at the end of class and comment afterward, "I was looking at your back and it is really Really weird!" (My boyfriend at the time also liked her better. I should write a B movie out of this) So, I looked in the mirror with a handheld and was horrified. I don't recall telling anyone- just kept checking it and wondering what was up, and really kind of believing that it was appropriate for me.

Ouch, it's so much better to be a grown-up and just have painful pain to deal with.:)

Also, no matter what your scoli stats shake out to be, congratulations on losing the weight, riding your bike, and pushing onward. Really terrific!

[The Historian]

Historian,

Ah, now I remember where I noticed your "history" on this forum: The Rude question- an interesting topic- non-medical, but taps into areas we all have grappled with and most of us have hidden residual pain that we have stuffed all our lives.

The way I first learned of my scoliosis was in a modern dance class at the age of 16, when my girlfriend's mom decided we were hanging out too much and could use a bit of structured after-school time. We were way in over our heads, the teacher completely ignored us- so we felt like goofballs to begin with. The grand finale was having my friend sit behind me in the stretch portion at the end of class and comment afterward, "I was looking at your back and it is really Really weird!" (My boyfriend at the time also liked her better. I should write a B movie out of this) So, I looked in the mirror with a handheld and was horrified. I don't recall telling anyone- just kept checking it and wondering what was up, and really kind of believing that it was appropriate for me.

Ouch, it's so much better to be a grown-up and just have painful pain to deal with.:)

Also, no matter what your scoli stats shake out to be, congratulations on losing the weight, riding your bike, and pushing onward. Really terrific!

Thank you. I've added some weight back, unfortunately. It's been a rough two years in my line of work and stress eating is a problem for me. Also, my crooked knees acted up for much of this spring, keeping me off the bike and out of my hiking boots. But I'm in action again on both fronts:

http://www.bikeforums.net/showthread.php?650315-Pole-Steeple