I don't normally and this is why. this is long. I am ranting but have a point.
I get tired of people asking how it's going. I tell them "a bit better each week" with a smile, trying to be positive and brief. they want a one sentence full explanation and I can't do it in one sentence. I barely understand it all myself after gobs of reading and literature and years of doctor's appointments. Surgery does not heal some of us immediately. It takes time. I am one who is looking at many months if not years to recover according to the doctor due to a long standing nerve compression. I am lucky to be walking he says.
There is a fine line between others being too helpful and concerned and insensitive. I don't like the lifeguard following me around the pool as if I'm going to sink any second! and I don't want to discuss my back with her. I want to just enjoy the pool and do my walking therapy. Nor do I like people rushing up to me outside saying "You shouldn't be here! why aren't you at home??"
We have to get out some time! Are we supposed to live in the house all the time??
Some seem to think I am not doing enough to recover, some think I'm overdoing it. I feel constantly under attack. Some think I am in less pain than I say I am and/or are just plain insensitive. Some discount the back problem altogether eerily, as if it doesn't exist! Enough already! Most people can't stand the sight of someone with a physical disability because it scares THEM. It can scare them to overreacting but trying to help, and it can scare them to deny it altogether. this is why I spend so much time alone.
This is between me, the doctor and the physical therapist!
People want a one sentence explanation of your complex back problem because they have short attention spans. it's not a simple answer sometimes. And it's hard enough for me to understand and deal with, when it is a neurological problem to boot.
I find myself not wanting to be around others now. Partly I have been grumpy from pain and percocet (like many of you have said you are) and part is depression, but frankly, I find being around others a real drag, as I cannot fit in with them now. I'm that "disabled person" Or I am that person who "just thinks she is disabled but really isn't." (those are the eerie in denial people, like my mother in law who tries to tell me my back is fine as I'm barely able to climb out of the car and then hobble inch by inch).
No matter if I "try" to explain MY medical condition to the naysayers who have asked for an explanation, they won't listen, so now I say nothing other than to quip with a smile, "I'm improving a bit each week." as in Go AWAY! I'd like to strangle my mother in law.
Like most of you, I see it as we are "only temporarily disabled, improving with hope and perseverance." And we don't need abuse while we are recovering! To survive, we need compassion and help, or at least, do nothing, say nothing, but don't be insensitive!
Mostly I see fear on people's faces, and I try to be patient with them and compassionate and I know that people cannot understand the pain, cannot understand the medical condition much at all.
I only talk about my back with my husband, the doctor, the PT and those who are compassionate/helpful, like in this forum (who are going through it and understand).
Basically, I try to be patient and understand because I have found that people create their own little worlds, living in denial of anything bad or ugly, and when faced with someone who is physically hurt or traumatized in any way, go deeper into denial of reality, because they can't stand the thought of it happening to them.
My life experiences have taught me to accept the bad wtih the good and remain positive towards myself and others (and some are sorely trying my patience). If I am in denial of something happening to me or someone else, how can I help myself or anyone else? If I am denial of all that is bad, all pain, then how can I help someone who is experiencing pain if I refuse to accept that there is pain?
It would make an interesting book. People like my mother in law help no one, sadly. Life's hurdles have taught me compassion at least, and I'd rather be in pain and know compassion, than to live comfortably and not know compassion.
At any rate, what words work for you? Have you withdrawn? Are you hurt by people's insensitiveness? Do you keep to yourself and not talk about it?
I talk about it, basically b/c these days I have nothing else to talk about and that is sad. When I get my hair cut, it comes out (people ask where I work) and naturally it goes to "I'm not currently working though d/t back problems" then they ask what happened and there you go. My family and friends ask how I am doing, and I get sad b/c I say the same things-same s***, different day. Or good days and bad days, or I'm OKAY. They are just as frustrated as I am, they don't want me in pain and want me to get better. Sometimes I keep it simple, other times it floods. I don't know.....
No, I don't talk about it much, if at all, to outsiders. If asked, I say only that I'm fine, or doing okay. They wouldn't understand if I told them anyway so why bother? Have I withdrawn? Yes, for many reasons, mostly my disability. Now that I am limping so badly being out shopping for any length of time is impossible, so I am even cut off from that kind of social exchange. Depressed? Sure, I am...but not without hope. I am even jealous sometimes when I see woman older than I doing things I haven't been able to do for 6 years. Yesterday, I saw a lady about 60 yrs old sink down to the sidewalk and sit cross-legged while she waited for her ride, then easily stood back up. Made me want to cry, I tell you. But what good would that do either?
All I can say is life just isn't much fun anymore.
I dont like to talk about my back or my disabilty because I get depressed yes we cant do the thing I would love to do with my kids but at least Im alive Ive been so depressed about all this I even thought of taking the easy way out to stop the pain to stop the depression but if it wastn for my hubby and my kids I would of. WC has made me feel so depressed saying that Im not hurt and saying that Im faking it. It just get me even more depressed. It seems like know one wants to hear it the pain anymore and know one wants to go out with some one that is disable at least not any of my old friends. I guess I feel safe at home no one to judge me to one to look at me funny.
I don't talk much about it either. I'm not sure if seeing someone else with health problems scares people into realizing how frail life and good health are or what, but most people can't deal with it, so I usually just say I'm hanging in...doing the best I can, etc.
I've never been a whiner....never been one to go on and on about my own problems, but the lack of sensitivity, even among family members is really sad. I think my health problems have made me more sensitive to people with disabilities and I take the time now to look at them in a different light.
Carol: I know what you mean about feeling jealous. I have a serious autoimmune disease in addition to this new back thing and and I've found myself feeling the same way. Sometimes it's envy of young girls who are so healthy and full of life, but lately I've noticed the elderly people where I live gardening and doing yard work that I'm unable to do. Sometimes I feel like I wish I could trade this tired body for a healthier one, no matter what the age or appearance. I've always been considered very attractive, but what good are looks if you're constantly in pain or can't walk. But still I try to stay positive and be thankful for what I have.
That's why I find these health boards a Godsend because you all understand and can relate without prejudice to what I'm going through....because you've been there yourself.
I dont really talk about my back pain or my disability....I just basically tell people when ask how I am doing....I say that I am getting along... take it one day at a time....I have found that people that arent experiencing what I am, cant relate and have no idea the pain we deal with everyday.... and the depression it causes having to deal with it... if you try to talk to most people they just kinda look at you like... uh huh... yeah... I know what you are saying.....which we know they dont...pretty much just saying what they think we want to hear...So I just basically avoid discussing it, because I dont want to get more depressed then I am by it..... Yall have a good one... Take Care.....
Last edited by TexasWildRose04; 10-12-2004 at 10:38 PM.
wow, I didn't think I would be the only one who talks about my back. Maybe b/c the only people I really talk to about it are family, friends and co-workers (all of who are in healthcare). Plus, my mom and MIL are RNs, my dad works in healthcare, one bf works at the mayo clinic. So, most of them understand (other bf used to work at the same hospital as me). Maybe that is why?????
Wow, can I ever relate with most of you - about NOT talking about your back pain. I have spinal stenosis, plus a collapsed disc. Walking can sometimes put me into tears. But, just becuase I LOOK healthy, people think I am acting to get sympathy.
Those types of people really tick me off.
When getting out of a car, I sometimes have to stand and hold onto the car door, just to let my back 'catch up' that I am standing up - THEN I can walk - and then usually I walk slowly.
I am 42 years old, and I am amazed at the rude looks and comments I get from people. Some of the comments are not said 'to' me, but rather loud enough for me to 'accidentally' overhear. These are comments like:
my grandma can move faster than HER
some people are just SO lazy
you think she's ever heard of exercise?
These comments hurt - even though I act like I don't hear them. If I COULD walk faster, stand up straighter - I WOULD.
I don't feel like I have to explain my condition to everyone I see...but sometimes even my family just doesn't seem to get it.
They'll ask me how I'm doing, and then get a glazed look in their eyes when I go to answer them. (like they are not even listening).
So - for the most part, I just say "i'm doing good, thanks" and then vent to my dr and physical therapist. Especially the physical therapist. They say they hear that a lot from people with back problems (and other medical problems). That 'healthy' people just don't want to hear about you, or be around you unless you are 100 percent healthy.
I hope you all have a wonderful and pain-free day.
i do not talk to anyone but husband and now sis in law who finally excepts im really in pain and not wanting attention. as for when people ask how im doing i lie and say fine,great how about you? but inside i wont to scream out (you couldnt handle hearing how im really doing. it is funny how people dont listen when they ask the question whats all wrong with you. it like after the first couple of words they stop listening because there trying to comprhend the first 2 words you said. im also tired of being asked how am i and how are you feeling. i agree with the post that stated same s*** different day. nothings changed but the day,dae,month, and time.i also am very depressed over al my issues and i am alone and hate to socialize because when i try and thats hardly ever to be part of family get to gethers i feel like im under a microscope. and the last thing i need is another psyc evaluation. im just a loner and prefer it atleast then no one can see me and ask why im crying, why are you slotchin,why are you so angry. man give us a break and let us live our lives the best we can and not making us feel like were a plague.
When people ask how I'm doing, I usually just say "I'm doing okay" and move on to something else. I really try not to dwell on it in conversation- there are just so many better things to talk about! Sometimes I talk about it to close friends- one who has been through this so she understands what I'm going through. Otherwise, I just kind of deal with it myself!
[B]DITTO DITTO DITTO....... to everything everyone has said. [/B] I couldn't have said it better. Before I had my surgery I was only able to work partime can't sit for very long, I stood up one day and moaned and the lady next to me said "yea go ahead and ride that back pain as long as you can" I didn't know what to say.
Last year I made $30,000. this year I'll be lucky to make $10,000. I'm 36 yrs old I'm not FAKING!!!
And then if you do want to get out of the house for a little while people look at you and say "well if she can go there then she could go to work." I'm doubling up on narcotics,that would go real well! I do medical billing, I can't screw up someone's medical record with a false diagnosis.
[B]I'M SORRY I JUST WANTED TO VENT TOO!!!!![/B] ~~~DEBBIE~~~