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Dealing with pain and people who just dont get it
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fetay posted:
I used to be the girl that would never sit at home because i used to get bored just laying there and watching TV. Now as my pain has gotten worse, I rarely go out at all anymore and by Friday night I am just plain wiped out from work. I have lost friends over my back pain and I am starting to think that my family thinks I am loosing my mind, as they can not actually figure out what is going on with my muscles or nerves in my back and it is just like here is another pill to try ( when all I want to do is get off of them) .

How do you guys explain to people what you are actually going thru?? I mean I can not make plans with anyone a day ahead of time and sometimes even a few hours ahead of time. I mean I used to make plans still, but then I would end up canceling all the time. There are really only 2 friends that I have left that I do things with, and an amazing supportive husband that loves me and is the most understanding and caring man in the world. I mean how do you make plans when you dont know how you are going to feel??

I have this big long weekend trip coming up with my husband in June where we are going to go to a baseball game, the zoo, ValletFair, and probably the mall of america, but i am sooooooooooo nervous that one of the days I will end up having to cancel since I am hurting so bad.....any thoughts???

Thanks for listening and any help is appreciated!!!
Crystal
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painloopy responded:
I can completely relate to your issue. I used to be on the go all the time. Now I'm on the "no go" all the time. I've lost a lot of friends because "out of sight, out of mind" kind of effect that happens when you aren't out and about with them. It's like they forget that you are sitting at home bored out of your mind and all you want to do is talk to someone. Then when they do call you don't want to tell them what you are going through because you will start sounding like a broken record and they don't want to hear it. Plus they start telling you to try things that are totally not right and they just don't get it.
My suggestion is look for support group in your area that deals with chronic health conditions. I go to one and it has made a world of difference. I can vent about all these frustrations so I don't have to drive my family and friends crazy with them. Like this community on webmd - we all understand what you are going through and to find others who can relate can take a lot of the guilt off. I also suggest a good psychologist/therapist who specializes in people with disabilities or chronic conditions.
I've learned that it is completely ok to say no when I don't feel good to all the things my family and friends think I can still do but really can't. I don't give a big, long, explaination as to why. I just tell them I will definately try to attend something they want me at but can't committ until that day and not to take it personally. I also have learned my limits over time and try to at least do things I know are within my physical limits so I'm not completely home-bound. I decide which things are worth the pain afterward and choose the things I really want to do and not what other people really want me to do. It's ok - we know what we can do. They don't.
 
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becker40 replied to painloopy's response:
I understand completely what you are going through. I, on the other hand, do not have a supportive partner. He won't offer massages or talk to me about my pain. We don't even go anywhere anymore because Im in so much pain. I have become depressed because I can't even play with my son outside. I hate when you tell people that you are in pain, and all they can say is "that sucks." I used to be a "planner" as well, and now I have to live day to day based upon how much pain I am having that day. I do not like going anywhere where I have to sit or stand for long periods of time. I hope things get better for you.
 
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trs1960 responded:
I like to quote (in my hed) Flo from Finding Nemo.
"Just keep swimming, just keep swimming..."

Than I usually cry or just move through the fog of life. I'm a 52 year old man that is just trying to hang on and be a husband and father...life is truly a tough battle.

References to the mal effects of pain date back to Aristotle and despite our modern miracles, we can't stop it. We just keep people alive longer so they can suffer through unbeareble pain.

Sorry I can't offer you a better outlook, but it's been a bad day after a long string of many bad days. I still want to be a positive person and I yern to be the poet an not the antaginost.

So as long as you can keep your mind free, think of a peom for all of us. Pain is just the body's way of bitching at you.

Tim
 
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An_245682 replied to trs1960's response:
I am the same way. I am 27 and I began having pain a few years ago when I was training for a half marathon, but it wasn't until 18 months ago that it became debilitating. The pain strained friendships in two ways: it made it hard to go anywhere and stay in contact especially for the first 9 months when I could not get off the couch, and second I became depressed with chronic pain and feel as if I have little to contribute to conversation.

I get really frustrated that no one understands what I am going through and how much constant pain I am in. So I tend not to talk to any of my friends in depth about it, and usually wait until I can put a positive spin on it. There is no way they can relate and I really don't want to be a mood killer by talking about it. (possibly not the right way to go about it) But some friends will at least know you aren't exaggerating and will be able to see the pain in your face and body. It was just recently that someone suggested I find a support group.

Since January I have become a bit more mobile, and try to get out more, even if it just means switching to another friend's couch. I recently went on a small vacation, and it really tested my limits. I wanted to do tons of site seeing from morning til night. But even being realistic and taking long breaks in between small excursions, my back was killing me by the 3rd day. It was fun, but I paid the price with excruciating back spasms and migraines. My best suggestion would be to try as much as you can or are willing, but be careful and know you can't do it all right now. Maybe choose the events that are the most interesting.

It is terrible to have to miss out, but I find the pain to be worse a lot of times. Giving up my active lifestyle is still a struggle, I mourn it. But I have become closer with other friends who enjoy a movie or dinner or cup of coffee and a chat. But I hope you are able to enjoy your weekend even if you have to cancel an activity or two. I'm hoping for the best for you.
 
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Faith_2012 responded:
Hi Crystal,
Sorry to hear you are going through so much...But I must say...if your friends have decided to know longer surround themselves around you then they weren't your friends to begin with...True friends stick around no matter what the situation..Also, you say that many do not believe that you are being truthful about your chronic pain...well...the way I have made family and friends aware of my health conditions is to show them proof...Show them the meds prescribed, test results, mri's, then they will be able to see through that, that you are dealing with quite a bit...It is hard to express what is going on, especially if you are not one of those ppl who like to complain such as myself. Hang in there and good luck!


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