The most unthoughtful thing...

[KBear]

What is the most unthoughtful/rudest thing someone has said to you regarding your spine problems? (Feel free to post more than one, will make me feel better about my life )


I'll start, the other day my mom was 'commenting' (aka. criticizing, nagging) me on my back issues.

She said "I don't know why you aren't back to your old self yet". Like, do you really think, that if I had the ability to magically go back to my old self, I wouldn't? I then, logged on here to show her the 'letter from a person in chronic pain to a normal person' (that MaryMary posted awhile back). Next insult, "I don't understand why you want to 'talk' to people you don't know". I told her it's because I don't have friends in real life (and that shut her up (albeit momentarily), as she knows that's not true). She reads the letter, quietly, as I sat there. I'm thinking to myself, ok, she is thinking and probably feeling like a jerk for being such an a$$ to me. Oh no, how wrong was I. Third offense, she says "do you think you are in chronic pain?" (Note: This was not an 'honest' question; but said rather sarcastically). I then tell her the definition of chronic pain and say yup, 3.5 years of pain everyday, definitely puts me in that category. I then get the next offense, "I thought surgery was going to fix that". I explain that I am getting better; but am still not 100%, so yes, I still have pain.

She then pulls out my step dad's MRI's to show me how bad his back is and he lives with it, without drugs and won't have surgery (as 1 dr told him to never have back surgery). I then go on to tell her someone can have a horrific looking MRI with no pain and someone else can have a perfect looking MRI with lots of pain. After talking to her till I was blue in the face (and not a damn thing sinking in to her thick head), I called the visit over and left. As I'm leaving, she adds "come back and see me more often, we miss seeing you all the time" Hmmm, not sure about you; but if liked being treated like dog , I'd go date my ex-boyfriend; so I'll pass on that!

[Katie]

Oh Kathy, sometimes those who are closest to us are least able to truly see us....like that old song, "you always hurt the one you love". Or maybe you are too young to remember that one

Those things she said are rude and thoughtless, and I don't know why rrelatives think they can get away with it, but it always seems to come under the heading, "Because we love you and want what's best".

It took Dear Heart quite awhile before he believed me and my pain. Mainly it was denial, but also from never having been 'there' before. I certainly am not condoning it because it still hurts today, even knowing why he said what he did, and I won't repeat it right now

Vent away. That's what we're here for, and I'm sure I will come up with some goodies to share at a more reasonable hour, not 2 am

[ajj1001]

I tend to suffer from the problem of over solicitiousness ! What friends (who are wonderful and really supportive) say and what I hold back from screaming in brackets.

- ooh it the first time I have seen you out of bed in ages
( i don't spend 24 hours a day in bed, in fact I get up evey 30 mins i just need to have a few rests a day but I am not laid flat or asleep, its just my wonderful adjustable bed is the most supportive and relaxing place to be and so I don't have to take more tablets than necessary)

- let me do that for you
( if i can do and its ok for me to do I will do if not i will leave it, I am perfectly capable of asking for help if necessary but doing nothing is bad for me.)

- I was going to see if you wanted to come but thought you wouldn't be up to
(if i know about something then I can plan and will move heaven and earth to try to be a able to do it)

Phew that feels better, I hate being fussed over but I know they are only doing it from good motives so that helps.

[Katie]

OK, finally thought of something!

When I drop something (which happens often) and I'm within an inch of picking it up, someone will say, oh you shouldn't be doing that, and reach down quickly and pick it up first.

I am almost there, people! Since I am already down and now have to get up anyway, at least let me have a reason for being down there!!!!!! Show-off!!

Now to go get a coffee and think of more. This could be fun!

[Cindylou]

Kathy, I am so sorry for that rude and insensitive exchange you had with your Mom. What's that old expression? "That which doesn't kill us makes us stronger." Something like that. I think a huge part of the problem with folks like your Mom (and I know we have said this before, but I think it bears repeating) is they can't "see" our pain like you can see the hair falling out and the body ravaged of a cancer victim. Especially when we "put our best face on" to hide the pain around folks. Not that you did or do that, but I have a real tendency to do that. Because who wants to be around a whiner, has always been my philosophy. But my psychiatrist once told me that it's ok to occasionally show the you that's truly in pain. Makes sense, but still hard for me to do, in all honesty. I think what might be in order with your Mom (hold on) is a very frank discussion on your part (and not when you're in the heat of the moment, but a different time when things are neutral) to express to her how it hurts you when she says the things she does. How you know she can't see your pain, but it's there, it's real, and it would serve you better if she could show some compassion. And if that is just not possible, then frankly, I can't be around you right now. If you can't be on my team, then I don't need it. Period. I don't know if you have it in you Kathy, because who wants confrontation with their parent, right? Nobody! And it's not so much expressing it to her because you know she's not likely to change, (awesome if she does!) but the empowerment it will give you to say it. And free yourself from it. Believe me when I say I know this from experience. I have my hurtful stories too, and will chime in later with that, but I just wanted you to know that "we get your pain." And we are real people. Hang in there, and don't let the bastards get you down!!

[KBear]

Katie & CL- Thanks for the encouragement. I have tried to talk with my mom; but have accepted that she is just not going to be the support I need. It used to bother me that her and I didn't have that relationship and I would try making it work, to only be disappointed. Now, it really isn't a big deal. I just don't go around her much, that way I don't have to deal with it.

But, back to the point. I thought this could be a good venting and funny thread (as even though our feelings get hurt, alot of it is just flat out funny!) As well as interesting to hear others experiences; like Allison, I have the exact opposite problem, I want help and can't get it. I would have never have guessed that any of us had to much help (which totally makes sense now that you mention it). Katie- I totally had a picture in my mind of you slowly bending over for the prize and someone swooping in and stealing it from you! Hilarious. And CL, I'm the same way, who wants to be sad and depressed all the time, happiness is a choice.

[Justin]

Kathy--I'm sorry you have to "put up" with this nonsense (sorry for being blunt). I can truly empathize--I have one relative that believes that I would be cured of all of my spine issues if I prayed more--somehow she *thinks* that I wouldn't be going through all of this if I just kept praying. Now, I'm a praying man, but I was explaining that no matter how much I pray (I do believe in miracles for the record), it's not going to instantly fix the serious pathology that I had on my CT/myelogram prior to my surgery in May.

When it comes down to it, she's implying that if she was in my shoes it wouldn't be this way and that she would be healed. I'm truly offended by this. It's almost as if she is implying that I've brought this upon myself. Talk about trying the 'ole guilt trip. Who in their right mind would voluntarily / electively choose to be in a position of spine issues with chronic pain. I know who: Kathy and Justin.

I know that Kathy has had this happen to her before because we previously talked about it. We are both young and look healthy so no one has a clue (unless they know us) that we have struggled with chronic pain and have had to have invasive, life-changing surgeries. I think being young adds another layer to it. I went to a concert in NYC before my operation and I had requested handicapped seating. I informed the doorman. He looks me up and down and replies with a LOUD, sarcastic-laughing tone "You're handicapped?" Now I usually hold my cool, but I was in a lot of pain and everyone was looking at me and my group of friends. I was pissed and I explained that if he actually read the letter from my physician that explains my current limitations that would have covered all the bases. It makes me made when people pass judgement on others for merely how they look / or don't look. Well, he read the letter and yelled over at the other doorman in his LOUD tone that "We got a handicapped one here."

I don't have a disability that people can see, but for those few minutes I think I felt what it feels like to those people that disabilities that are easily recognized. Anyway, sorry to ramble on. I was just trying to underscore the issue of disabilities that can't be seen, or easily recognized by others.

Spine Patients look normal, but we are not. We have serious medical issues going on. I always think about this when I come along someone during my day that is rude--they could be dealing with any long list of personal issues. At the end of the day, I wish people would give each other the benefit of the doubt.

Keep your head up Kathy (and everyone else)! I'm so thankful that we can all be abnormal together. At the very least...you guys get what I'm saying--that's priceless.

[KBear]

Justin- Of course we brought this on ourselves, we were just sitting around one day thinking 'hmmm, life is boring, think I'll be in chronic pain. Everyone in their 20's should try it, healthiness is over-rated!'. I have also had peple imply that if I prayed more (which I do), that I wouldn't be in this situation. To them, I say, read your Bible more and you would see that Paul was afflicted with 'a thorn in his side' that he was never freed from and that man knew Jesus and was one of the first missionaries, so he obviously was a praying man. I have accepted that God may not choose to heal me and I have to accept that. I know God can heal me; but that is His choice, not mine.

On the handicap thing, I have a handicap tag in my car, for parking (this helps with the distance that I have to carry my 3 year old into the store). One day, I was going to get in the car and this lady looks at me and the kids, and comments, 'she's not old, she doesn't need a handicap tag'. I said, "excuse me (as she was saying it to her friend; but loud enough that I would hear it); but I just had major back surgery and am handicap!" I have definitely seen and felt what the permanently disabled go through on a day to day basis, and it is sad, demeaning and frustrating.

[Katie]

Way to go! Great statements from all above.

Here's something else that irks me, and I guess I should take it to the manager of the store. I also have a handicapped tag, and when I go to the big stores, I often use the electric wheelchairs that they provide. Almost always, the ones at Costco run out of power half way through the trip, and I either have to change it out with another, or walk back to the front to get another depending on how fast they die. The staff is not very sympathetic because as you say, I don't LOOK handicapped.

It is time to renew my membership there, and I'm going to be sure to mention it. Anyone else use those things?

[daveinaustin]

Nobody understands what we go through, besides us!!!

Thank God we have sites like this where we can each share our fears, doubts, challenges, and successes as we each travel through our unique, yet similar journeys of pain. We receive the encouragement, strength, and hope we need to make it through another day. In return, we help the next people on their journey.

Happy 4th of July!

-Dave