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Old 10-21-2010, 08:04 PM   #1
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how do you deal with non believers?

I have chronic pain. I know it, my doctors, close friends and family know it...but unless i am wearing my brace or have needles sticking out of me or whatever else, people constantly assume that because they cannot see a problem, it therefore does not exist. I get accused of being an addict (although I hate taking meds) or lying, being crazy etc, etc,...you name it. I know there are others of you out there who understand. y question is: How do you deal with it...How do you cope?

Gentle hugs,
Zoey.

 
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Old 10-22-2010, 01:17 AM   #2
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Re: how do you deal with non believers?

Anyone close to me does understand at least a little because they have mostly seen me go pail in the face and my lips go blue. Also I get load and at times aggressive to an extent as I need to be helped or have someone listen to me. I do have those who ask about the medication I take and they can be judgemental but after a bit one just has to care about yourself and forget those who are not understanding. But really no one can understand this unless they have experienced severe pain that doesn't leave you. I have also experienced a breakdown and it is also the same as once you have experienced depression and pain that bad you finally understand others pain and anguish. It is not a nice place to be and even if you have a loving family it is difficult to explain the problems we have.
I do hope the surgery will help me recover but after 10 years of suffering I know things just don't change over night. I am in that much pain at the moment that I have had some tears and I am shaking quite a bit.
I had to wait at a mobile phone shop today for them to exchange a faulty phone and I don't think anyone could really explain the feeling.
I hope you find it easier over time to share your life with others without too much judgement or sarcasm from those who you need their support. I find it difficult and sometimes upsetting when my sisters make comments of how I will be all fixed soon after my surgery when I know it will be a lot harder than they realise. Good luck with your friends and family and I hope you can cope with their statements.
Allan
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25-Nov-2010: ALIF fusion L5-S1. 9 years of Chronic lower back pain. Nearly 18 months of pain across my upper pelvis, through my butt and down my left leg into my foot. Sciatica relieved by surgery.

 
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Old 10-22-2010, 08:49 AM   #3
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Re: how do you deal with non believers?

I have found/developed a little routine. When people start in about "sheesh you take so many meds, how can you walk, why do you take them etc etc, and the good one "you don't look sick." I just smile and say, Yes, the broken back after fusion surgery and the DVT that I had from my calf to my groin tend to slow me down some and give me a little pain. Do you want to know how bad it really is? You have to use the sickly sweet smile and the Miranda Lambert "Aren't you sweet!" tone to go with it. Then I just stand and stare at them. People usually back down right about then.

I gave up trying to justify my issues with folks that don't care or are ignorant. I just say "my,my,my, aren't you special." You just learn to build whatever defense that you can handle. Using some humor or throwing it back at them and just watching has helped build a defense for me. I will live in some degree of pain the rest of my life because of the broken back. Even folks who know my issues aren't aware of the amount of pain I have because I have learned to hide it so well. My hubby can spot it, and my dear DIL, but asides from them few know.

You don't need to justify your actions or your meds to anyone except yourself. Nor should you feel like you need to explain your meds to others.
One thing that you could do when someone starts in is to say that your doctor prefers you not to talk about it to people other than yours spouse and him and his staff. That should end the discussion. But if someone goes on you just say that you are under contract to him and can't break his rules...

Last edited by ibake&pray; 10-22-2010 at 08:51 AM.

 
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Old 10-23-2010, 09:44 AM   #4
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Re: how do you deal with non believers?

Hi Zoey:

I try to share as little as possible, just b/c I don't want ANYONE to know the meds I take. If they are stolen, then my doc will not replace them, per my contract.

Those that do know because of my hospitalizations just know I have a bad back. When people question me (I have a handicapped {OMG I HATE THAT WORD} plaquard that hangs from my mirror) and they say "what's wrong with you, you look fine!!!!" I just say "if you only knew", and leave it at that!

You do not have to justify yourself to anyone. Try not to let it bother you. I let it eat me up for about 3 years, and then just dealt with it with my pain psych!! He helped me to know, I didn't choose this, did nothing wrong, it just is what it is!!!

Sorry I do not have any great "pearls of wisdom" for you, but I know the feelings you are dealing with, b/c I have been there.

Feel better sweetie!

Blessings,
Becky
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Old 10-23-2010, 01:12 PM   #5
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Re: how do you deal with non believers?

Thank you...words are not enough...

 
Old 10-23-2010, 01:14 PM   #6
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Re: how do you deal with non believers?

I want to than everyonr who has replied or will reply to this post from the bottom of my heart. Bless you.
Zoey

 
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Old 10-25-2010, 10:07 AM   #7
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Re: how do you deal with non believers?

Awww honey,

Just keep your chin up and a smile on your face-it's folks wonder what you have been up to! You'll find your way. We all do it with different styles in a way that is comfortable for you. but know that we are always a welcoming spot to sit and put your feet up....we all need a break.

 
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Old 10-25-2010, 05:34 PM   #8
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Re: how do you deal with non believers?

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Originally Posted by Zoey1977 View Post
Thank you...words are not enough...
I mean I cannot thank you (all of you enough).
Z

 
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Old 10-27-2010, 07:41 PM   #9
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Re: how do you deal with non believers?

Zoey,

I have this same issue. Even when I use my crutch or cane people still think because I'm young (I'm 19) and because I don't have a brace or cast or something that I'm fine. I got yelled at on the bus the other day because I was sitting in the handicap seat. I sit there because its where I can store my crutch during my hour long ride. He accused me of carrying the crutch so I could have "the best seat on the bus". It was utterly ridiculous. I told him I needed the crutch because of horrible pain that makes it hard to walk and if he didn't believe me I was more than willing to show him my horrible huge scars from surgeries. I knew I was being disrespectful but I get pretty tired of the whole "you're not really in pain" routine.

I generally tell people that I really am in pain and if they don't believe me that is their problem. Once again disrespectful but people really don't understand.

That probably doesn't help at all but I can relate to this problem.

Besides aren't the people closest to you the people that are the most important when it comes to understanding? I believe it is. My Mom understands and believes me and that is all that matters to me. :

 
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Old 10-27-2010, 07:42 PM   #10
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Re: how do you deal with non believers?

Zoey,

I have this same issue. Even when I use my crutch or cane people still think because I'm young (I'm 19) and because I don't have a brace or cast or something that I'm fine. I got yelled at on the bus the other day because I was sitting in the handicap seat. I sit there because its where I can store my crutch during my hour long ride. He accused me of carrying the crutch so I could have "the best seat on the bus". It was utterly ridiculous. I told him I needed the crutch because of horrible pain that makes it hard to walk and if he didn't believe me I was more than willing to show him my horrible huge scars from surgeries. I knew I was being disrespectful but I get pretty tired of the whole "you're not really in pain" routine.

I generally tell people that I really am in pain and if they don't believe me that is their problem. Once again disrespectful but people really don't understand.

That probably doesn't help at all but I can relate to this problem.

Besides aren't the people closest to you the people that are the most important when it comes to understanding? I believe it is. My Mom understands and believes me and that is all that matters to me.

Alway,
Resa

 
Old 10-28-2010, 11:05 AM   #11
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Re: how do you deal with non believers?

I have the same type of problem. Some neighbors and "friends" who are always making comments about how great I'm walking today or if my back was really messed up I shouldn't be able to do whatever I'm doing at the time. It used to drive me up the wall but now it is their problem, not mine. One good one is my cane. I use a cane if I'm going to be standing or walking for more than a few minutes. So, sometimes I use a cane sometimes I don't. That drives people batty! They just don't get it! How can I be so bad off that I need a cane one day and not the next? I've even had a "lady" who has lots of back issues, ask how come I drive when I'm on all these meds? She only takes pain killers when she is in extreme pain so she never gets able to tolerate the sedation. Plus, she is always playing catch up. I've tried to explain to her but she won't listen so it's her problem.
There I've vented enough. Thanks for bringing this issue up.
Have a great day!

 
Old 10-29-2010, 09:41 AM   #12
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Re: how do you deal with non believers?

Hey Z, I too have often wondered why others say things about my "DRUG USE". It's really not any of their buisness and.... until they have four or five years of "PAIN MANAGEMENT" due to one's body wearing out , because of an accident, or hereditary bone disease , they will never understand. Human nature makes some gossip and others nosy. I do what my PM suggests, (combind with my input). I try not to let people know what I take but it is hard, when you take enough meds to equate one's lunch. Ha Ha. Keep your chin up. I don't look ill, sick, crippled, handicapped or any other word they could come up with. AND the reason is BECAUSE of all the meds. (DRUGS) that I take. I use my 20 something motto....If you don't feed me, or pay my bills, you don't matter. Smile it looks good on you.

Last edited by Administrator; 12-26-2010 at 09:15 AM. Reason: obscene

 
Old 11-01-2010, 11:39 AM   #13
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Re: how do you deal with non believers?

I was blessed with this issue in a deep way 4 years ago. It turned out a pose of my family had got together and decided they needed to see my doctor and write a letter to enter my file. They explained to the doctor that I was a hypochondriac, know as such since a kid; as I had had an Alcohol problem a few years before, I was now abusing the meds, as I ordered DRUGS off the Internet that was further truth (I ordered supplements etc, lol!) They explained I was once divorced and nearly will be again, they told the doctor I acted up in front of them (I have chronic nerve pain, get spasms when in major pain and the eyes of these loveys made me feel nervous, CNS heightened hence pain. They a couple of other points, true ones, but rhetoric.

I only found out through the pleasure of suing my surgeon (failed,) I got to see copies of all my doctors letters. Joy for me!

I tell you it has taken years to get over this, nearly major break ups with my family and now I have developed some sort of hernia around the pain area. Proof at last! At last it is truth of my awful pain. I thought I would go around to each of there houses and suggest they stick their finger in my hernia and then pray forgiveness, but since none of them had been to see my since I got this problem, I assumed that now they didn't care.....

All I can say to this, is that Acceptance in the key; they have their life issues and probably haven't yet realised they aren't perfect and so I accept they just can't comprehend my situation. Seriously, how could they, from their perspective. Still to the loving ones, the close ones, the ones who have seen it in action. I mean I'm a good actor, but 6 years of this charade, no way, lol.

 
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Old 11-01-2010, 06:27 PM   #14
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Re: how do you deal with non believers?

all of the above is correct...unless you have chronic, debilitating pain, you wont understand, therefore passing jugement....i refer to the painkillers im on as "medication" ; i have nerve pain and just tell the few that need to know the truth and what i take...others dont need to know...hang in there.. your support is here...bryan

 
Old 11-02-2010, 03:16 AM   #15
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Re: how do you deal with non believers?

Quote:
Originally Posted by bstinch View Post
all of the above is correct...unless you have chronic, debilitating pain, you wont understand, therefore passing jugement....i refer to the painkillers im on as "medication" ; i have nerve pain and just tell the few that need to know the truth and what i take...others dont need to know...hang in there.. your support is here...bryan
Thank you Bryan, I am entering my fifth year of chronic pain (disk bulges, pinched nerves, DDD, destroyed neck muscles, myofacial pain, fibro etc, etc) generally I do NOT tell anyone what medication I take as it is amazing how seemingly "normal" professional people have offered to buy it from me in the past...um NO...I take meds because I NEED them and not for recreation, and NO I am not, and never would be, (shudders) a drug dealer...grrr....their nerve...

one thing I have learned from this...although I work in social services, chronic pain can teach you a lot about the people who do not have anything wrong with them. I do say I take medication, but I do not say what and I will always take my daytime meds in a discreet place. However, people still ask, still judge, still expect me to do the things I used to, some dropped out of my life for a few years and expect i should be "all better" now, the life of the party again...sorry, no such luck. Pain sure does teach you the very important life lesson of who your true friends are.

Thanks to all who have replied to this post. It is comforting to know I am not alone.

Gentle Hugs,
Zoey.

Last edited by Zoey1977; 11-02-2010 at 03:19 AM. Reason: typos, left arm still partially paralyzed.

 
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