How do you make people understand?

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Draka
Regular Member


Date Joined Jun 2009
Total Posts : 256
   Posted 9/2/2009 3:51 PM (GMT -7)   
Really how do you get people (friends and family) or anyone to understand what chronic pain is and what it does to the mind and body?

I am so frustrated as I am just so sick and tired of hearing the following (as I am sure all of you are too):

You look so much better today
Call me when you're feel better
How are you feeling?
Why don't you see another Dr.?
Did you try this treatment?
You don't look like you have any pain
But you play tennis and workout so you can't be in that much pain
One drink won't kill you...

I just need to get this off of my chest.... just last week I explained to my 3 close girlfriends that I can no longer drink socially due to the two new prescriptions I am currently on....guess where they make plans to go out this week (tonight).... a bar...... I don't know maybe I am being too hard on them at least they tried to get together with me.... but I just don't want to go to a bar and not be able to have a cocktail.....

I canceled and am in tears now....I thought I could go and just sit, listen and watch but when it came down to it I just couldn't bring myself to go.... to make things worse they are not going to understand why I canceled at last minute.

How do I explain to people that my pain never goes away.... and just because I am happy, smiling and joking that it doesn't mean I am not in pain.... my pain is 24/7..... I am just dealing with it as I have learned to do over the last 10 years...... just because I am very physically fit does not mean I am not in pain.... working out keeps me sane and it is my coping mechanism..... when I am totally frustrated... I run... I stopped running for a little bit but started again because my surgeon and PM Dr told me I would not be causing more damage... due to most of my pain coming from genetics.

I have learned to for the most part to just keep things to myself.... I no longer tell my Mother anything about my neck... when she asks "how is your neck" I say "fine" then she asks is it still bothering you? I say "no, not really" I have to lie because they simply don't want to or can't understand and I have to constantly hear.... you have to stop this or you shouldn't do that....etc, etc....

Thanks everyone for just letting me get this out........ I am going running tonight even if it's still pouring........ and I am going to ask my Dr. next week for a referral to see a pain psychologists and possibly to be put on a antidepressant like Cymbalta.... do you think this will help me.... I am crying an awful lot lately

Does anyone hear talk to a pain psychologist and do you find it helps?
Thanks again...
Lisa


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 9/2/2009 4:15 PM (GMT -7)   
Lisa,
I think pretty much everyone here can relate to your post. One thing as far as your friends go - and it does depend on the friendship - is you might print out your post and sit down quietly somewhere with them and have them read it, and let it open up a discussion. I think if we don't tell people what's going on then we don't even give them the chance to understand. But even with that, some won't understand and some friendships won't be the same. Yet some people may surprise you and want to learn. It is hard even for us to understand why the pain doesn't go away, so I guess I can understand why it's hard for others. If you pull away then you'll be even more isolated. I'll bet they didn't even think about the choice of going to a bar - if they're friends, it doesn't seem they'd want to hurt you intentionally. And you may have to decide can you learn to go to a bar and have a "virgin" cocktail and still enjoy your friends' company? Sometimes if people are drinking too much, and you're sober, it may not be much fun, and it also may not indicate an overall healthy situation.

As far as seeing a pain psychologist and considering an anti-depressant I think both are great ideas. I'm on an anti-depressant and thank goodness for it. I was crying so much for awhile before I started taking it even my cousin was dropping hints and I hated crying myself to sleep every night. I'd be seeing a pain psychologist if I had insurance and the money to even pay the co=pay, but I definitely need my anti-depressant.

You're definitely not alone in this!

Hugs,

PaLady
p.s. loved your photos!

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 9/2/2009 5:57 PM (GMT -7)   
Hi Lisa!

I'm so very sorry your friends choose not to understand. IMHO, if they were considerate of you they would try to accommodate your needs. And trying to take you to a bar is just not right. I know this sounds a bit harsh...but are these friends you really want to continue being around? Friends are there for you in good times AND in bad so now it not the time to question your medical condition. I'm sure if you had cancer they would be all about helping you...but you are the one who knows them and I'm sorry if I picked on your friends too harshly. Just wanted you to do some thinking.

There are several ways you can try to get the message across if you want to. You could print out articles or stories that explain fibro...like the Spoon Theory. Invite them here to see what it's all about. If you would prefer not to have them in the same forum as you then ask them to look it up on the web and find out what you are going through. Plus, on your next doctor appointment invite one or both of your friends to go with you. You also might clue in your do as to why they are coming and if he's a good one he'll have those gals understanding before the appointment is over.

I too am one who doesn't share with many people. Not because the friends and faimly around me don't believe in fibro but mostly because I prefer everyone I'm related to across this vast continent not know the details of my muscle pain nor how my gut is functioning...lol That actually happened when I once shared about an appointment with my gastro...I explained to mom what was going on with the gut and within a couple of days our least favorite aunt was asking me how was the bleeding coming along! That's when I stopped sharing.

But you can always share with us and you know we'll understand. It's why we keep coming back because by helping others it helps me too.

Hugs,
Chutzie
Play fair. Don't hit people. Say you're sorry when you hurt somebody.
~Robert Fulghum

(\o/)Co-Moderator Fibromyalgia & Chronic Pain Forums
(/|\)


Draka
Regular Member


Date Joined Jun 2009
Total Posts : 256
   Posted 9/2/2009 6:21 PM (GMT -7)   
Thank you so much for responding PAlady and Chutz,

You know I have explained my condition over and over again to them.....whether they don't want to understand or they are just incapable I don't know..... I guess it's just really hard to imagine always being in pain all the time.... or I just do a darn good job of being strong and doing my best to act/be "normal".

I think they also may be kinda scared and are just staying away because now they don't know what to say and or they don't want to say the wrong thing.

I am going to try the antidepressant.... in fact I just printed out a voucher for a free 14 day trial of Cymbalta and also try to talk to someone..... if .... if.... insurance covers it.

I right now am going to look up the Spoon theory as I don't know what that is all about... thank you for teaching me something new and as always providing me with support.
Lisa


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 9/2/2009 6:24 PM (GMT -7)   
Hey Lisa,
 
I am sorry!!  When I was first diagnosed, I found that the friends did a lot of shuffling.  I had some that bailed and I had some that were just aquantanced that then became true friends.  You do have to learn how much to share.  The REAL friends let you share as much as you want and ask with real concern.  They don't judge and they at least try to understand.  I can take some adjusting for everyone.  I would hope that they would perhaps learn from this experience to find better ways to include you.  Do make sure you express your hurt to them.  If you sucked it up, then they may be obvlious. 
 
I loved your photos, especially your bulldogs.  They look very sappy and sweet.  Bulldogs have wonderful temperments. 
 
Good luck with this situation. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Draka
Regular Member


Date Joined Jun 2009
Total Posts : 256
   Posted 9/2/2009 6:50 PM (GMT -7)   
Thanks Gretchen... posting that particular photo of my bullies make me laugh..... they were so small... that must have been when we first got them... both of them now are 60+ pounds and they both turned "one" in July.

My Bulldogs and my husband.... I know.... truly love me.... and never judge me! They are the loves of my life! I am so thankful and lucky to have them in my life....

I did look up and read the Spoon theory.... it gave me a great idea.... I am going to write out exactly what it takes for me to get through the day... I really need them... and Chutzie you weren't being too harsh... they are really acting like "asses"

After I get through explaining this way.. on paper with photos (I will show them a normal neck compared to my neck... you don't have to have any medical experience to see my neck is funky)... they can take me or leave me.....
Lisa


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 9/2/2009 9:42 PM (GMT -7)   
Hi Lisa,

I know exactly what you are going through. I find that it is very hard for people to put CP in perspective. Most people just know mild, acute pain, like that of a bee sting. They can't fully comprehend what it is like to deal with that pain every moment of every day, nor the magnitude of pain we deal with. It makes understanding even harder when we "appear" to manage okay despite our pain. That gives people the idea that everything is okay, or that things aren't as bad as we make them out to be, when in fact, we are just trying to get through each moment & retain some semblance of a normal life.

If someone was to really look at us though, they would see that in fact everything is NOT okay. Despite our best efforts, our bodies give away clues of our struggle. I find that most people don't want to hear about our problems. That's not to say that they don't care, but they just don't want to take the time to really listen & understand. I find that I too give those short simple answers to the "how are you doing" type questions. "Okay," or "fine" are usually my answers, although most times, that is not the case. This has presented somewhat of a problem for me, as well. I've become so good at giving the generic answers, blocking people out, and pretending things are okay, that it's made it hard for doctors to realize the extent of my problems. Partly it's just the way I'm wired, but my CP has really pushed this introversion to the extreme. I kick myself every time I smile & say things are alright when I see a doctor, yet that's what naturally comes out of my mouth. Fortunately for me, my current doctors can see right past this & read me like a book. With a lot of effort, I've become much better at expressing myself, but I still naturally hide my emotions from others.

An antidepressant wouldn't be a bad thing to look into. Depression & CP go hand in hand. I know that I struggle with it, as do many others. I haven't had much luck with antidepressants yet, but with the help of a psychiatrist & psychologist, we're still pursuing this. Seeing a pain psychologist is also a good idea. They can help you learn techniques to deal with your pain & stress. I've seen one for biofeedback training, as well as another for an evaluation before seeing a new doctor. They can offer some interesting perspectives & perhaps things you never thought of before. If you're currently seeing a PM, their office should be able to get you the name of a pain psychologist, if they don't already have one associated with the practice.

All of us here understand, so any time you need to vent, come to us! I know it's frustrating, but I think that for the most part, we just need to accept others as the way they are. If you can get them to understand (even partially), that's fantastic, but most people won't. I've pretty much given up. We all have our inadequacies -- just another trait of humanity.

hugs,
Skeye

Draka
Regular Member


Date Joined Jun 2009
Total Posts : 256
   Posted 9/3/2009 6:15 AM (GMT -7)   
Thanks you so much Skeye.... we are really alike.... I too find it hard to tell my Dr. things aren't strong enough or not working.... I discovered being honest works best.... is now I am completely honest with my Dr.
Lisa


edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 9/3/2009 6:31 AM (GMT -7)   

Draka,

No one truly understands CP unless they live it!  I have heard over the years after one of my friends or family has an injury, surgery or procedure that has caused a temporary pain situation....HOW DO YOU DO IT day in and day out?  My answer is you just do it, some days are worse then others! 

As far as your friends meeting at the Bar!  I understand so much how you feel!!!!! I was not a big drinker but I sure enjoyed a Martini, Margarita or Amaretta occasionally....when I worked we had Happy Hour's once a month.  My husband has a Harley and a group of people that he rides with (I can't join in on this either) they make frequent stops along road trips at the BAR  (yeah REALLY).  We go to Weddings, BBQ's, open Houses, Birthday Parties and ALWAYS there is liquor.  I stand around with a bottle of water, at first I felt like the outcast (stupid) all because I couldn't have a drink?  Its interesting to be an observer and see grown people get louder and louder as they drink more and more!  I don't make an issue of not being able to drink, after watching others I'm kind of grateful that I can't lol.

Your friends don't understand because they can't understand!  I have found even with my own husband their indifference is usually because they don't know how to help or feel frustrated because they can't fix you, so they appear cold and uncaring.  Maybe invite them to your house and have a heart to heart! Let them hear your frustration and sadness over your situation and invite them to offer some advice!!!  Maybe this approach will make them think!!

Its sad that we have to deal with so many changes in all aspects of our lives because of CP!  I've lived it for 10 years and it doesn't really get easier but focus on getting through the day second by second, minute by minute.. 

We are here for you!!  ((((((((((((((((Lisa)))))))))))))

XXOO
Patti

 


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 9/3/2009 8:26 AM (GMT -7)   
Draka

You have gotten some excellent advice! As unpleasant as it is for you I would still go out with your friends to the bar, drink ice tea, water, or one of the virgin drinks. But do go out an socialize with your friends! Canceling out does not help you, or your relationship with your friends. When your in Chronic Pain it is very easy to isolate yourself and and over time you will lose your friends, and that is not good! Take it from one who knows! You need to have your friends! So as hard as it is, you need to some way make them understand what your going through and what your needs are, and if in the end they can not do that, then you need to look for new friends that can! But above all, avoid at all cost, going down the isolation road, it is to easy and in the end it will not help you!

Make no mistake about it, you have friends here that really do care about you, and will support you with your chronic pain. But you still need to have your "real life, in the flesh friends" (your friends here are real !!!, but as much as we would like, we cannot come and physically hold your hand a during your time of need and or take you to a needed Doctors appointment on short notice, if you have no ride!) "in the flesh friends" can do that! and lt is vitally important for you to have them!

I do wish you all the Best!

White Beard
Moderator Chronic Pain
 
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


L5-S1 Radiculopathy
New Member


Date Joined May 2009
Total Posts : 11
   Posted 9/3/2009 9:14 AM (GMT -7)   

People ask me how I'm doing, I say this is a "good" day, or a "bad day" but I never say "fine."  Or I joke a bit.  When they ask "what'd you do this weekend."  I respond with a grin "well, I made it to the couch."  I know that let's them off the hook but they've just shown me consideration too.  I just try not to dwell for more than 30 seconds on my condition in any given conversation.  Lately, it's "how ya doin?" and I respond "the shot's wearing off, time for another" or  "I'm holding off getting another epidural because I'm growing breasts. 

One thing I've learned after 3 years is that only you know how to manage your pain with the tools you are given.  It's all about coping.  How can you better cope with your situation?  Get rid of things in your life that you cope with now.  Exampe,   I rehabbed hard for 15 months, until I realized I get more motivation and relief from inactivity, so I quit my exercises--I wasn't getting any better anyhow--one less thing.  Activity INCREAES my pain.  If I want to have a drink or two, I do by taking less meds.  Yeah, some say you shouldn't cut pills or mix with drinks but hey it works for me, and I'm in charge of me.  It helps me cope.

I've got a 2 month supply of cymbalta.  The first dose made me so ill I couldn't function, so there it sits in my drawer.  As far as I'm concerned that would be just one more thing to cope with - getting on or off that pill.   There are entire forums devoted to Cybalta addiction and side effects.  Do your research before getting hooked. 

Give yourself a break - you can do everything friends, family, doctors etc. ask of you.  They will never know what it's like.


1988 - L4-5 herniation
2006 - Partial Laminectomy with Components of Cauda Equina Syndrome L4-5] (left side)
2007 - Minimally Invasive Spinal Fusion L4-5
2008 - Right-side radiculopathy L5-S1
Standing order for epidural/nerve blocks & monthly Percocet refills


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13477
   Posted 9/3/2009 3:53 PM (GMT -7)   

Hi Lisa,

This subject has been tossed around this forum many, many times. No one except people that have CP can truly understand pain. Expecting someone else to understand just seems to be one of those things not possible. You can supply them with all the info available and they still are not going to get it. Thats why I do not expect anyone to understand me or my life. If you saw me on the street you would never guess that I have a pain pump inplanted due to CP. If you saw me on the street you would really think I was ok. You have to remember people tend to judge the book by its cover. In your situation you look physically fit thats all people see. I offer up very little info anymore about my problems anymore either.

White Beard was right on the target about isolating yourself. That is so, so, so easy to do. I am very guilty of that. If you feel like going out with with your friends, then by all means do it. If you would rather not go out somewhere, suggest they come to you. One thing about CP is you will find out who your real friends are and who are nothing more than aquaintenances in your life. I am no longer able to drink alcohol but I do go out with others that are having a drink. I have gone to many pool parties and even thrown some pool parties of my own. I always had myself a big mug of iced tea or if I am out a glass of water & lime can also look like a drink. Try not to be  too hard on your friends, you really need them more than you realize. I can tell you first hand if you start declining all invites you will be deleted from the call list.

The sad part is CP just has a way of screwing many things up in our life. I don't know maybe that part of the game. We just seem to have to find ways to stay ahead of the game at times.


Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2284
   Posted 9/5/2009 12:45 AM (GMT -7)   
Lisa,
I see you've already gotten much sage advice from many of our members. My own take on it is that there are 3 types of people in this world when it comes to understanding CP:
1) Those who live with CP & who understand what you're going through on at least a basic level
2) Those who don't know what to do, so they just pretend that nothing has changed -- they walk at the same super fast pace, they schedule hiking trips, trips to the bars/clubs, and are hurt when you turn them down
3) Those who don't know what to do & so they act like your whole life and being is not completely about CP. They ask about it all the time. They come up with constant suggestions for you on what to do (99.9% of which you've already tried -- twice). They gossip about you behind your back, calling them "caring brainstorming sessions". And they treat you like you are totally helpless. For example, I have known some people who when I ask them to slow down their walking pace, they start talking louder, or (my personal favorite) one time the person started describing our surroundings like I was visually impaired. lol I'm not really sure how the 2 are related, but I guess in her mind whatever helps for one impairment helps for another.

In any case, most people genuinely are trying to be helpful. They may be ignorant and misguided to the point where they hurt more than help, but more often than not they are well-meaning. I do not always do this, but when I can (and when I have the emotional strength to deal with this on top of dealing with the pain), I try to educate my close friends/family about how to treat me now. I know I always thought that it should just be intuitive, but somehow people get panicked or something & forget to use common sense. I get pretty aggravated sometimes, but I have found that just explaining what actually matters & what doesn't seems to go a long way. I would agree with the others, though, that there really isn't any reason you cannot go to the bars. I really think your friends were just trying to cheer you up & make sure to include you with the group. Why not take them up on that? If it turns out they won't accept you if you're not drinking, then forget them & know that we will be here to support you. I just know from my own experience though, that hard as it was to make even minor changes, it really was healing for me to feel like CP hadn't stolen every single good thing from my life. I could still go out with my friends & have a good time even if that didn't include me having a drink.

As far as getting people to actually say/do the right things, I think that starts with trying to be as accommodating as possible of them. After that, there are some things that we just cannot do no matter how much we wish we could. I've got a working list that I share with people of helpful things they can do when interacting with me. I based it off of the job-based list that JAN put together. Here's the link to their site: http://www.jan.wvu.edu/media/ChronicPain.html

I've found that giving people a quick explanation of what's going on -- I usually try to limit it to: I have a birth defect & have had many surgeries; as a result, I often am in pain. Pain is cyclical, so some days are better than others. Some people (like my current co-workers) want to learn more about my condition, but I've found that less is more unless they are medical students or something where they can actually understand. Otherwise, people start trying to relate my situation. Acute pain is not at all similar to chronic pain, so those comparisons end up not being helpful either to me or to them. After a basic overview, I explain what I need to be able to join in a specific activity. For example, "I love nature, but I cannot walk for long periods of time. I would like to drive as far into the site as possible & then will need to only walk a block or two at a time. I walk slowly & may need breaks in between." I tell them what I do to try to cause as little disruption as possible: "I will rest up the night before. I will meet with my doctor to get some injections to help with the pain and I will bring a wrap around ice pack to help keep things under control." And finally I give them an example of how something worked in the past: "I'm looking forward to this b/c I went for a walk down the lakefront last summer and it was great fun. I only had to stop 3-4 times & was really proud of that. But best of all, I got to spend a wonderful time with my close friends, who took turns walking at a slower pace so I was never left alone."

Trust me, I know that it just sucks that we have to explain things to people. I hate doing it. I'd rather just be left alone most of the time & when needed, have people who can just tell that I'm walking slower and can adjust their pace to mine. But most people who haven't been through something like this, or at least been educated about how CP affects people, either in class or by a friend/family member, just don't ever learn how to handle it. You could just withdraw from people completely. But I tried that for almost two years & it's really not any fun at all. So for me, and this may not be for everyone, I found I needed to invest some effort into teaching people I cared about what was going on & how they could help me to be as "normal" as possible by making simple accommodations & by otherwise treating me the same as before.

I don't have it all figured out by any means. I was just asking for help dealing with my new co-workers a couple weeks ago. Things are a tiny bit better with a couple of them (& the worst one lost her job -- so sad, but my days are brighter without her commenting about how I struggle to get around the office, how I shouldn't be there, how I ought to be resting, find another doctor, etc.), but I have a long way to go. They all really like to read, so I am currently looking for a book about how to treat people with chronic pain/disabilities/illnesses that we can all read together & discuss. A friend at work is willing to help me with that, so I think it has real potential. It will combine their overly-zealous quest for knowledge with my need to not have to be their constant source of news & education about CP/disabilities. Plus, I am hoping that it will leave the workplace a better place -- with my co-workers becoming more aware & sensitive towards future workers/clients with some sort of difficulties.

Gosh, though, I sure can relate to feeling so horrible about not being able to do the same things in the same way I used to. It took me so long just to get to this point & I still have a long ways to go. But it does get easier, I will say that. You will try different things, find some that work, practice & they will get easier. In the meantime, know that we are hear to support you. When no one else understands, I have found that there is always someone here at HW who does. So know that on those really horrible days, you can always turn to us. And on the rest of the days, go out there & give it a shot! :) If it works, you will have found a moment of happiness. If not, you can come here & sob to us. ;) We have all been there.

take care,
Frances

Draka
Regular Member


Date Joined Jun 2009
Total Posts : 256
   Posted 9/5/2009 10:42 AM (GMT -7)   
I've got the answer to the question I asked.... how do you make people understand....

The answer is..... how can you make someone understand something you don't fully understand yourself... I need to show them little by little and bit by bit... that's the best I can do.

I have been reading tons of information on the web.... I came across this woman's CP blog where she said to get people to understand you need to "get over it" ...... she was trying to convey one simply cannot understand unless they go through it themselves.... at first I was a little angry at reading that..... but after thinking about it over a couple of days.... I thought she's right!

I need to get over myself.... I need to go on with my life and not isolate myself.... I can only be me..... I can let my friends know.... I have good and bad days... what I am going to do is ask them over to my house... I am going to have a wonderful dinner party and explain my condition by showing them my MRI and the report.... I know they most likely understand what they are seeing or reading but like I stated before... my cervical MRI does not look right even to the untrained eye...

I made a comparison of a normal cervical MRI and put my MRI next to it.....

I am going to also ask them to ask any questions they may have..... we'll see....

Thank you again everyone.... I appreciate everyone who took the time to offer advice.... I have learned something from each and everyone of you!
Lisa


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 9/5/2009 12:31 PM (GMT -7)   
Draka,
The dinner party sounds like a great idea. I kind of wondered if you could make this into some kind of game (I guess from seeing your thread with Smoochie - and I know nothing about all that gaming stuff!!). Sometimes people's eyes open through humor, but I'm not that creative that I could come up with something. Somehow I think you are! Maybe you could make a game we could play with our friends that would help them "get it" in a diffferent way. CP monopoly??? LOL

Seriously, though, one of the answers to your question is truly the answer you found on that blog. We really can't "make" people "get" anything. Like leading a horse to water.... It's hard to make peace with that in life. If only other people would do or understand what we want them to life would be so much easier!!! :-) But it just isn't possible. What really needs to happen is that WE need to "get it" - that we're not going to make someone understand. We can share things, offer explanations, even get creative, and some people might come close or be able to find an experience in their life they can relate it to, but others won't. And it's easier to let that all go rather than struggle with it.

Keep seeing the friends who show some level of caring and willingness to be at least sensitive some of the time to your needs, and those that aren't may need to be released from your life.

Let us know how that dinner party goes!

PaLady

Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 9/5/2009 1:19 PM (GMT -7)   
I would like to offer a counter view to this subject. Play a sort of Devil's Advocate and turn things around.

As mentioned this subject has been tossed around many times in one way or another, even in the short time I have been visiting. "How do I make people understand?" While we want to have those around us understand what we are going through it is also important for us to remember that those around us are also going through an issue or two also in dealing with our conditions.

Regardless if the person really understands or not how we feel, how tough things can be and so on those around us are all too often in a darned if they do darned if they don't no win situation. If they bring up how we are feeling, try to offer help, ask questions, etc they are all too often viewed as stupid, nosy, etc. If they don't bring it up they are viewed as cold and uncaring.

I believe that many time those around us, especially those close to us, want to understand, want to help in some way, and want to be kind, but because they don't know what to do they end up doing the "wrong thing". Each of us have our own preferences about how we want our condition dealt with by those around us. Some like to be asked, others would rather it not be brought up. Because of this I think the answer is to honestly sit down and talk to those closest to you (family, friends, co-workers) and tell them how you would like them to handle things. Throw them a life line so then they can toss one back to you.

Granted this will not work for every one because there are those types who couldn't buy a clue for a trillion dollars, but just like when we have a pain day of 9, when we get to a 7 it is better and the same can apply here. Beyond that the only thing we can do is keep moving on the best way we know how and forgive those around us who are clueless and try to muster a little understanding ourselves.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 9/5/2009 1:31 PM (GMT -7)   
Jim,
I think you raise an excellent point. I was kind of afraid of bringing it up for fear it might get taken the wrong way. Maybe the simple way to put it is if we want to be understood, we have to seek to understand.

You're so right that CP doesn't just affect us; it affects anyone and everyone trying to be close to us. And I can say firsthand that I'm not always consistent in what kind of response I want from someone, so how on earth are they to know? LOL My one cousin has listened to me more times that I can count, and I know she has many, many hardships going on in her life and I have not returned the listening ear. I know all too often I switch the conversation over to my issues without even realizing it. And sometimes I want to talk about my pain and health challenges, and other times I don't. I can't even predict when! And I'm not even living with anyone. I can see it could drive a spouse crazy!

I would also like to add (ducking a bit, but trying to stay brave after Jim's lead) that other people have a right to their lives, including spouses. (duck, duck, duck!!!LOL) It's tough, but we really need to think about the fact that friends and family may want to do activities without us at times, so they can walk faster, do more, or just not have us around for awhile to have to deal with whatever our pain or situation throws up at both of us. They need some breaks. To be truthful, if I were healthy and wanted to go mountain climbing or skiinig or whaterver, but felt guilty because my spouse couldn't and held back from doing those things, I'd become resentful after awhile.

So thanks, Jim, for having the courage to raise this point.

I'll come up from the hole in a little bit! :-)

PaLady

Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 9/5/2009 3:01 PM (GMT -7)   
To put it even more simply PaLady (and you are right) everyone needs their "ME" time. Sometimes that "ME" time is spent alone, other times it may be spent doing something with someone else. This is true regardless if everyone is healthier than Superman on a sunny day or if they are sick and hurting all of the time.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 9/5/2009 5:18 PM (GMT -7)   
 
 
   Dear Draka,
 
       Good evening! *huggs* I know its a random thought! But I was thinking! Do you have a "comedy club" in your area? Maybe an alternative for friday night out with friends? smilewinkgrin
 
*warm huggs*
      dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2284
   Posted 9/5/2009 6:18 PM (GMT -7)   
Dani,
We have had a thread for jokes, silly stories, parodies, etc. in the past. We needed to limit it to only 1 or 2 threads at a time & must be VERY, VERY careful to keep it clean & appropriate for youth since we have members in their teens who read the posts, but other than that, our mods have always been so wonderful about allowing us to support each other with posts to help get our minds off of the pain for a bit.

If you're interested, you can always start a new thread for that purpose & invite others to post. :)

good luck,
Frances

PS -- I was just watching a comedy clip of Charles Walden, a comedian who has problems with walking right. It was so funny to listen to him share stories about all the stupid things people say to him. I've heard many of them myself -- but the way he turned it around on them just made it so funny. imho, comedy goes a long way towards healing the hurt we experience from others in our lives. :)

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 9/5/2009 7:04 PM (GMT -7)   
   Dear Francess,
 
    Are you talking to me or the new dani?
 
    I can clear up an confusion reguarding my "idea"
 
" just last week I explained to my 3 close girlfriends that I can no longer drink socially due to the two new prescriptions I am currently on....guess where they make plans to go out this week (tonight).... a bar"
 
When I could no longer drink a few freinds and I would go to the local comedy clubb once a month instead smilewinkgrin It was / is called Laffs Comedy Clubb.
 
Have a great evening!
 
 
*huggs*
   dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


blep1954
New Member


Date Joined Aug 2009
Total Posts : 2
   Posted 9/5/2009 7:56 PM (GMT -7)   

Lisa,

I hear what you say.At this point in life (55yrs old) I really have no friends except a buddy I met in 4th grade who now suffers from the ravages of MS.He is the only one besides my wife, who herself suffers from hemochromatisis which causes damage in large marrow joints and liver as a result of long term iron buildup I can talk to.That shows the only people that understand CP are those who suffer from it.Like you I am rather fit and work out regularly and often push myself beyond what normal people 1/2 my age can do.I work a Union construction job and other tradesman are constantly yelling at me for grunting and outright screaming on the job as I cope with the pain.When I stop for break or lunch they look at me as if I were a drug addict because I have to take a perc or two during the day.I recently was arrested by local sheriffs for DWAI drugs because I could not pass a field sobriety test.So now just to add insult to injury I have to spend thousands of dollars do exhonerate myself in district court.My neck sticks like a turtles head out from it's shell and I am markedly hunched over.I cannot stand on one foot because of neck,back,groin,and foot problems and when I look up I see beebops all over from C-6 nerve damage.They couldn't care less.Repetitive motion and various spills and falls at work along with 3 rollover car accidents over 35 years has taken a big toll on my body.My psycho now tells me I am bi-polar but who the heck knows.It could be the ups and downs of dealing with this pain stuff that shifts my mood so much.In short,although you may feel alone I assure you that you are not,we just suffer in silence most of the time. Here's the whole list of my problems from the head down:  C-6 permanent nerve damage and degenerative changes,partial tears in both rotator cuffs with bursitis and calcification and degenerative changes,nerve damage and CT in Rt wrist along with calcium deposits from old fractures of 4th and 5th metacarpuls,degenerative changes in L wrist include sclerotic and hypertonic changes and ossific densities related to old avulsion fractures,degenerative changes at L2-3,L3-4 and L5-S1 along with thoacolumbar dextroscoliosis.Diverticulitis in ascending,traverse and descending colon,buildup of scar tissue in rt groin as result of hernia repair is painful as well.Partial tear of ACL in rt knee,huge painful bunion on rt foot big toe.

Other than that I feel pretty good wink

Randy


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13477
   Posted 9/6/2009 6:20 AM (GMT -7)   
Draka I think you did answer your question in many ways. We do have to accept what we have and move on at some point. Thats probably the toughest nut of all to crack. Accepting and moving on. It is very easy to get stuck in a rut and dwell on what we can't do or how bad we feel. PaLady calls it making peace with it which is another term I like. I still get overwhelmed at times but try to keep those times short lived. I found it best to set small goals for myself. When the goal was met the reward was well worth it. We may not be able to do all the things we use to before, but there are still many things left we are capable of doing. Sometimes we have to just look for those things.
Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.

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