Happy to hear you found this post and also found it helpful.
I'm not sure printing it out and giving it to your family would help as they don't seem to be very empathetic people to begin with, but it is worth a try. If they could spend one hour in your shoes they would understand!! I can't imagine living near my son and not helping him get around or to appointments or with anything else he needs.
I just wish I lived closer to my son. He didn't start having spine problems until after I moved to England. Sometimes we spend 2-3 hours on the phone filling our forms that he has a hard time concentrating on due to meds. I do anything to help him if I can!
Your friends sound like wonderful people and you are so lucky to have a job you love.
Thinking of you and hoping that your family will one day understand you better and accept you as you are.
Dealing with chronic pain takes it tool not only on the patient but the families also.
Sometimes its a matter that the family is tired of hearing about the pain, the doctors, the injections, the medications. So they appear cold and distant
And there are other times when they are totally supportive.
And of course there are times when they are just angry for you the patient.
Much of that comes from a lack of understanding. Most people can understand acute pain. After all, almost all of us have had that one time or another. Its easy to describe what it feels like when we step on a nail. And its easy for others to understand what we are feeling.
But with chronic pain, its much more difficult. Its almost as you have had to live it (chronic pain) before you can understand it.
Trust me there are plenty of members that deal with high levels of pain every day and still go on. Why, because there arent many other choices. We have to live with what has happened. So, dont think that because you have not heard that much from other members that your pain is any higher , nor are you as desperate.
People who live in chronic pain for a long time find ways to not let it consume their day to day life. It isnt easy, but its necessary.
We can't help with the family situation, and the best we can do is to tell you to never give up, and always try to keep the most positive outlook on your condition.
Ron DiLauro Spine-Health System Moderator I am not a medical professional. I comment on personal experiences.
It makes me sad, and it makes me mad. People I have worked with for years, then the last 2 or 3 years my nerve pain has become unbearable. When I'm late for work, they talk their dirt, I hear them whispering, I've heard rude comments. I would have thought they knew I was a hard working employee, for over 30 years and that there must be a reason or something wrong. It has just turned into a reason for them to gossip and say hurtful things about me. I just cannot understand that kind of thinking. I remember we had a little clerk in here several years ago who had some serious health issues and when they started in about her, I would leave because I would think, well how could you possibly know how she feels. I cannot believe how cruel others can be.
To me, the true benefit of this letter is in My reading it... what I know and what I accept (from myself) are 2 different things. Reading this letter reminds me that I'm not superwoman... not that I ever was, but I sure lived like it for awhile. I would walk through the pain (and suffer in silence later by myself).
Reading the letter reminds me that I'm not superhuman, that I DO have issues that I need to deal with... and other people can't possibly know unless they've been there. I can't ever expect someone else to know what it's like to cry in the car because they had to wait longer than expected on line. Or because someone stopped short in front of me while walking... or they dropped my card and looked at me to pick it up... or any of the hundreds of things that can and do go wrong while I am attempting to live "normal" or at least, my version of it.
My family is willing to help... they are often willing to do anything they can to help me...as long as I ask...I just hate to ask. I don't like to explain how I feel, hell, I don't even want to think about it myself, never mind discuss it with someone else. I don't WANT to give up going to the store... or driving myself... or being able to work. And yet... there are days when I can do none of that and need help.
So, this letter has made me see that no one can "see" what is wrong with me. They can't live a day in my shoes, and even on my worst days I wouldnt wish that on them... in my own weakness, I've found strength.. they couldn't handle it, couldn't deal with my life... and so, I'm stronger than what is wrong with me.
We're born into a culture where fixing the broken stuff is not only accepted, but expected. People fix their noses, their bodies, their butts their lives... then they see us..... and there is no fix. That can make loved ones feel inadequate... which can bring on frustration... for which the only outlet is... the cause of feeling that way.... as much as we need understanding, they need it too.
For me, I keep hoping that science will catch up with my back before it's too late to "enjoy" it. I'm not willing to "try" the current fixes... I don't want to... I'm afraid to. The fear of it being worse after stops me from trying... which is probably not a good thing.. but it's me. I've had major big surgeries for other things... so it isn't that. (shrug)
anyway, I think I've gone on long enough... I really just wanted to say thank you for the insight this letter provided.
I really liked this, much truth to it. I think I'll give a copy to my boss.
You sound like me last week. I have come to realize that many people go thru these same situations and deal with the same type of people. It does seem to be family and close friends that treat you the worst. I don't understand that. My heart goes out to you, I know it hurts and it makes you feel like giving up, when you have already given up so much. I know there have been times that I have thought about ending it all, but then there are those good times that I still do enjoy. It is just rough, and people can hurt. Take care and do what is best for you. Try to surround yourself with good people, not self absorbed jerks.
Thanks for posting this letter. I printed it out and gave it to my mother-in-law who just cant seem to wrap her head around my injury. She's so concerned about my pain meds and believes that because I had surgery I should be out running marathons!!
There are people that simply don't have empathy...they will never understand how another person feels.Realizing this is painful..We fight this realization,and it is an exhausting,futile fight.This battle adds to our pain.It is a waste of valuable energy.I made a written list of the people in my life,I put all the good things about each person on the list,then I put the things that have been not so good(concerning my pain issues). I found that each person was different.For example,my brother is always willing to drive me home after I have injections,but he is not available for daily things I need help with.My husband has a good job and is willing to work overtime to keep us going,however,he lacks empathy and minimizes my pain.so I don't talk to him about it.I have friends that always have a natural treatment suggestion(which can get annoying),but they also will just sit and listen to me talk.I don't tell my mom anything about my health,because I know she will criticize me no matter what,but I also know she understands my independant attitude because she is the same way.This works for me,I know what to expect from each person,this gives me the control.I control how each person can make me feel.I try very hard to not expect things that I know they can't deliver. It just makes my life easier.It's worth a try.
a very good letter .but the spoons thingy is a bit shorter and gets the point across just as good
"just that I dont want to sum it up each and everyday for them" - thats so true. I know people mean well, but when they say "how is your back today" I find myself saying "oh fine" or "just the same" or whatever, because nobody (myself included)wants to hear " although I'm smiling and being pleasent, I slept 1 hour last night so I'm exhausted, dizzy, and can't remember anything more than 10 minutes, my back feels like someone's drilling into it, and I'm now so short tempered I may just kill you with this mouse mat by ramming it down your throat" - so instead, we say "OK" or "fine" and they take that to be true! It's a bit of a no win situation really. I don't think anyone *can* really empathise with your pain, and so many people whine when there is nothing wrong (there were so many fake bad backs where I used to work that you wouldn't believe it - but ruins it for us with real ones) that people with real pain are "just another one complaining".
I've been off work for a few months and am going back next week (though I'm no better, like most of us here I need the money) and am *dreading* the nice well meaning people I work with asking me if I'm OK 200 times in the first week..... even though I know they are being nice.