Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Hunchback Blues...

Can anyone relate to this scenario? I walk into a restaurant (or any other public place) and I can feel eyes on me. Since the AS hit me in my 20's (I'm 33 now) I still get uncomfortable in public. The fusion surgery helped with some of the correction, but I do not stand completely straight. I have come to terms with the AS, but it is hard when complete strangers come up to me and ask what's wrong with my back or what happened to me...Some days I actually take the time to try to educate people about AS, but there are some days I don't have the patience and I get irritated. I wonder sometimes if I should just use a wheelchair in public so people would not question why I'm walking like a duck-waddle, waddle (sorry, have I mentioned my dry humor?).I actually have a cane I use when I have pain and also a walker. I guess if I did use a wheelchair the questions from strangers wouldn't stop. I am thankful I can still walk, but it gets hard sometimes. Ahhh, I'm whining...
I just wanted to know if any fellow Kick ASers could relate.
I feel very blessed that I am still able to do certain things that I could do before the AS like riding a bike. I get the "blues" sometimes b/c I don't want the attention my hunched back gives me.
Peace, Love and Happiness,
El

hi el...
ohhhh yesssss..i can relate...i was gettin' bluesy yesterday..looking at my hubby's straight shoulderblades..at the age of 46 with fantastic posture..and this little bug of myself at the ripe age of 36 with twisted shoulderblades and obvious back issues.

been through the fusion surgery too..didnt help me in my case...actually made my as monster go full throttle! used the wheelchair..had to answer q's to strangers, the usual..."how did u hurt yourself?" or the "but you are so young.."for a few yrs i was able to educate folks that cared to listen. i still do on occasion. but most days i keep to myself. depends if i am having a good not so painful day or a real bad cant think straight day.

i feel blessed too ...have my hubby and kiddos who keep me busy and lots of things we still try to do. sometimes i march thru the pain, sometimes this bug cant march but whimper and retreat back home. but we have our good days and bad. i think i just try to remember how many more good days i have than bad to help me thru the rough bumps. and as can be quite testy.

we would love attention but not the hunched back..me too! heck i get the funny stares at my handicap parking or being dressed up and my cane. i had a fellow today backstep at the grocery store to double check my handicap plate. then they see the waddle and 'nough said. but whine if you have to...helps us get through those tough times..and that's what we're here for..to listen when you are happy as a clam...or when the as monster just wont get off your back...hope the blues get past you soon...hug from a bug]

Dear Sweetone

Over the years my husband has had tons of stupid questions and weird looks. If ignorance is bliss, there's lots of blissed people out there.

Just be yourself, and know that your inside-you is absolutely gorgeous.

If you really want people to back off, carry some pamphlets on arthritis or AS. If people get too nosy or rude, whip some pamphlets out of your purse and offer them. If they are truly interested they'll take them,if not they'll back off real quick. 'Here's some information on my illness.... ah, er, be seeing you, bye'

Maybe you could start a post on "what is the dumbest comment ever made to you?"

take care of yourself Blue Northern

EI,

Oh yeah, trust me--lots of us here are used to going through the good ol' public staring gauntlet. Ironically, while looking for another post today, I stumbled upon this posting, which I left months ago in the Surgery forum in response to a similar topic:

"Suffice it to say, I was going to tell you that I have gone through the same thing myself, as my AS got so bad at one point that I had about a 60 degree bend and was practically staring at the floor when I walked. It wasn't in my head--people were staring, esp. kids, and it did affect me very badly for a while. It still does bother me, and avoiding those stares is a part of my day-to-day life, but I have learned to deal wiht it much better since I had my spinal osteotomy surgery (see, this is on-topic!) and was straightened up quite a bit, and since I was married. The first event, the surgery, was 10 years ago, and the wedding was 8 years ago, so I've done better with the whole staring thing since then, but I do sympathize with you--it's hard to put up with, and it does affect the way you approach life, of that there is no doubt. Try not to let the stares get to you, and try to remember that those stares can't change the good person you are, can't change how those who love you feel about you, and point out a problem in the person who stares (if they are old enough to know better), not a problem you have."

So there you have it--originally in a different forum, different thread, but right smack on topic. When I used to worry more about the staring, I used to think about where I had to go each day and kind of estimate what the "staring potential" was for that day, and I do remember actually skipping certain events (eg, kid-heavy gatherings) rather than put myself through a situation that could be incredibly painful emotionally.

These days, I am still very much aware of the staring, and of course I do what I can to minimize it, but I no longer let it have the power over me that it once did. I live my life and do what I want to do, and if someone stares, and/or makes rude comment, well, I take solace in knowing that they are the person who has lowered themselves in that instance, not me. I try to figuratively "hold my head high" wherever I go, and I always remember the words of the immortal Jebediah Springfield: "A noble spirit embiggens the smalllest man." (Just a little Simpsons humor that I know fellow fans will recognize from the classic "Lisa the Iconoclast" episode!) Hang in there in every situation, EI, and know that your KA brothers and sisters have--literally--got your back and know what you're going through, and in spirit, we're right there with you giving you the strength to overcome any awkward or painful situation.

(Old George: I know from your response in the other forum that this topic can drag up some bad memories, so I apologize if I brought them right back to the surface by reposting my response here. You said then that you had even tried to block out the worst of these types of memories, I believe, and I just want to let you know that I can very much relate to THAT sentiment too. There are a few situations like this that I've just filed away in the very darkest corner of the biggest, dustiest, least used corner of my brain, ideally never to see the light of day again. --B.)

Brad

Good point made BN...
I believe it was Steve aka Stevec here that mentioned that one of the unknown AS facts was that people with AS are above average looking... He posted this awhile back...and since AS tries to kick us down, knock us out, and we still keep getting up..it makes us stronger, more determined, resilient, and yes...better looking...

Soooo...I will be keeping that thought next time i hobble down the grocery store with my shopping cart about to knock some aisle over due to lack of hand control...

Seriously...its true what u said ..and I agree... Stupid questions come and go, but our inner love and beauty stands..

We all find our way somehow of coping with the challenges of having AS.

Good advice to El Brad.

I have, as you said, tried to lock away some of the more hurtful stuff, containing them is a bit more difficult.

Now that I am 69 and have also had the benefits of the osteotomy, I am starting to look like many other seniors who are suffering from nothing else but old age and the addition of my cane has given me the added touch of distinction. Yeah, getting old sure beats the #@$% out of having just AS.

No apologies needed at all Brad. When you start to talk about this subject, we all feel better about ourselves.

Well done,
George (old is good)

Thanks BN,

Your hubby is a lucky guy.

George

I always try give people and answer they don't expect like my wife hits me in the back of the head all the time thaty why i am bent over .Some days its hard to deal with and thanks for KickAS at least we can talk to people (FAMILY) that truly understands.
Bradford

El

Never let the people get to you. You know your self that you are a good person and that is all that caounts. I deal with the stress of people starring with humor to. I always get the last word in by saying that I got a job at the Airport as a crack sniffer and this is why I look this way and then to get them even more flustered I say. " You think that is bad I drive too " Then I just walk away and turn around and look at them wondering just how I could be driving. This is me standing up so that you have an idea why I say I work at the airport. . Even on my best day all I see is Butt and feet when I get out of my wheelchair.

John