*Weekly Topic: Validation of Chronic Pain

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Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 3/13/2011 4:40 PM (GMT -6)   
Validation of Chronic Pain
 
 
".......Pain is real when you get other people to believe in it. If no one believes in it but you, your pain is madness or hysteria."
 
 
How do you communicate your pain and limitations to others?
How do people respond to you as a chronic pain patient?
Do you think that a persons previous experience with a chronically ill patient effects the way they view your condition?

 
Some understate or hide their pain. Often engaging in strenuous activities. As a result of the overexertion, increased pain / damage will result. Family and Friends often show a lack of appreciation and understanding to the physical circumstances.
 
Some openly communicate their pain. Easily saying no to activities that are beyond their limitations. Pacing themselves and having "good" days. Finding support and validation from those around them.
 
Some overstate their pain and limitations. Engaging in the abnormal sickness roll to fulfill unmet needs. As a result anger and resentment by family and friends soon follow.
 
There are times when even openly communicating you pain you will be met with lack of understanding. Similarly when overstating pain, someone might gain support and understanding.  There can be many many variations...... 
 
 
 
 
~~> ".....If there was an obvious amputation, or even a cast on a limb, those without experience with pain might better comprehend what one goes through with this "invisible disease." Without apparent physical abnormalities it is difficult to understand, or "believe" how one might be suffering. One of the responsibilities of those who care for and treat the person suffering with pain is to help him or her deal with the lack of understanding or appreciation of their physical circumstances."
 
 
 
~~> ".....no instruction book exists to guide people living with such ongoing challenges. People with chronic symptoms must sometimes learn to adapt to new routines or limitations. There was a time in our lives when we would promptly recover from illness, but now we find ourselves riding a wave of symptoms that wax and wane and never quite go away. This is a tricky ride to maneuver, especially for someone who is accustomed to experiencing decent health and a prompt recovery."
 
 
 
"......There are three versions of sick role: 1. Conditional 2. Unconditionally legitimate 3. Illegitimate role: condition that is stigmatized by others."
 
 
 
 
"....variety of "secondary gain" motives, which may include financial compensation; avoiding school, work or military service; obtaining drugs; getting lighter criminal sentences; or simply to attract attention or sympathy..."
 
 
 
 
"....the persistence of a maladaptive mode of experiencing, perceiving, evaluating, and responding to one's own health status, despite the fact that a doctor has provided a lucid and accurate appraisal...."
 
  
 
TIPS ON WELLNESS
 
 
 
~~> "......Overcoming suffering and pain is difficult - sometimes it even seems impossible, but there are things you can do to help yourself. You must be your own "best" advocate."
 

(A note to all: This is not a discussion for attacking other members. Each person will feel differently about this topic. Remember to respect each others difference of opinion.)
 

TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

Chronic Pain Moderator
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flower123
Veteran Member


Date Joined Apr 2009
Total Posts : 856
   Posted 3/13/2011 5:11 PM (GMT -6)   
Great post, Dani. For me, in general, people are very kind and understanding. I am blessed to have an amazing family and supportive co-workers. I hope that it stays that way. Well, I have one co-worker who is not supportive and has actually said some very hurtful things. I don't think that anyone really understands chronic pain if they're not going through it, but not understanding it is no excuse to be inconsiderate.

That said, besides her (at work), I have really been blessed.

I do tell people when I am having a flare up and can't do something, and everyone is fine with it. I have run into some problems with one of my family members, but I don't take it personally. She gets hurt when we cancel.

Let's see...I know that there are a lot of CP patients who are able to tough it out and not tell others around them that they are in a lot of pain, and since I am in pain literally all the time, I don't talk about it constantly, BUT I do talk about it to whoever I want whenever I feel like it--usually when I get to the point where I'm having trouble breathing because the pain is so high. I try not to complain, but it helps me to get it out, and I have found that it ends up making people understand why I'm a bit cranky sometimes, etc.

When I do end up trying to hide my pain, I do things that I shouldn't be doing--like standing or sitting for too long--and then I pay for it later. It's not worth it. At meetings, I get up and stretch, etc. It helps a lot.

All in all, I actually think that in many situations, it is better to not hide it. I mean, sometimes it is appropriate to hide my pain, but, hey, at this point, it unfortunately is a part of who I am...as much as I hate it, I have come to accept it. I no longer have that hope of getting better like I once did.

Okay. Don't want to have a pity party for myself, so I will stop writing.

Warm hugs to all,

Flower

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 3/13/2011 7:34 PM (GMT -6)   
I agree with Flower - a great post.

This topic is very close to me - my CRPS diagnosis took six years to come about because the doctors, surgeons, even I think my own family, thought it was all in my head - the surgeon who did my first knee surgery actually told me at our final meeting, after 2 years of me being in pain, that the only help he could offer was a psychiatric referral because I was obvious mentally ill...

I am the first to admit that I am terrible when it comes to pacing myself. I grew up in a family and environment where I was taught to push through the pain barrier - I played footy and I was a gymnast. I actually broke my leg as a 5 year old and it wasn't x-rayed for 2 days - nobody (including the doctor) thought it was a serious injury as I didn't cry and kept trying to walk on it. It turned out to be a 2 1/2 inch spiral fracture of my tibia. When I had the knee injury that started off my CRPS I was part way through a 3-day hike - I walked 20km on it the next day. I am better than I was because I learnt the hard way that I need to put myself first, but I used to drive myself into the ground - almost literally - I would work or take on other tasks and push myself until I blacked out with pain and/or exhaustion. Which is stupid, but the way that I am hard-wired. As a result I rarely let my pain show through, unless it's so high that I can't keep the mask in place. I smile - because sometimes if I don't smile I'd cry. Part of it is also that I feel a need to protect my family from my pain. I do agree with Flower though that there are times when it is better not to hide it.

I guess in terms of strangers 'seeing' my pain, I have it easier than a lot of others with CP because I have very obvious visible signs as well as pain, and I have to use my wheelchair to get out and about.

Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 3/14/2011 11:09 AM (GMT -6)   
 
 
     This subject is a hard one for me. 4 years ago I knew I was in pain. I saw an urgent care doctor after I began vomiting from my pain. He touched my back a bit, loaded me up with pain medications and told me to rest. To follow-up with my regular doctor. He made me feel like I was a "silly woman who needs to learn to pace herself." I know he meant well. I know my husband meant well. The pain never stopped. It got progressively worse. Eventually I passed out from pain in my back yard. I woke with ants on me and my daughter crying (back patio). I don't think it was more than a couple minutes. It was enough to scare me..  So... I went to my regular doctor and he said the same thing. Here is a referral to a pain management. They will help get you taken care of. When I went to the pain management doctor it was same thing. Poke-poke, just muscle spasm. He was in the middle of politely telling me that I couldn’t possibly be in that much pain and to tuffin up... I interrupted him, shook his hand, thanked him for his time. Promptly gathered my things and left. He was shocked. I was scared, wondering if anyone was going to help me.
 
     That night my primary asks see me. He already knew what had happened with the Pain Management doctor. He is sorry. He sends me down the hall for X-rays. When I get home I get a call asking me to please go to the City. A doctor known as a spine specialist is waiting for me. That the area of the hospital would "look" closed but to just walk down the hall to the left.  ...and that is how my progressive spinal deformity began (at that time it was just one in the beginning stages).
 
     During that in-between time before my first x-ray, even my friends and family treated me like I just needed to tuffin up. Even though I had never complained of anything before. Always the one my friends and family turned to. "The strong one". Still I was belittled, ridiculed... The worst statements are clear as day in my mind. "Your not dying you know." "Honey when you’re my age, then you can complain." "I have sciatica, now that is painful." "If you could just do what needs to be done and be indifferent about it, that would be great."
 
     ...*sigh*. I fully believe that those statements, those "views" on my pain were directly related to previous experiences. I think that many doctors have run across young ladies at 27 years of age that are overstating their pain. That they have come across many "drug seekers". I feel friends and family have run across many others that had painful conditions that were overstated. That when in comparison to themselves... really very small problems.
 
     Now does it make it OK what they did? No. Even that PM doctor, I see to this day. Still he is apologetic. Very kind. Very polite. Even friends and family are sorry.. well, the ones brave enough to apologize. Some really took their reactions to me initially, to the extreme. Their guilt has prevented any further contact. Which really, may very well be a blessing in disguise.
 
     I know at times people are "offended" or "angry" at the way that I present my pain. I do have very serious problems. Many of those problems still need answers. Lets face it, if I progress much worse I will loose my mobility completely. If other functions in my body progress much worse... *shiver*. I face very scary problems daily that I have no control over. I get the impression that the "anger" and "resentment" is because I am happy. Before you laugh, hear me out. I don't let my problems stop me. Sure, I have to go about tasks in a unique way. I still complete tasks. I still get up each day. Care and love my family, my household, to the best of my ability. Even if it is at a slow pace. For example even making breakfast.. I have to wake up at 5:00 or 5:25 am to begin the process of making breakfast buffet. Often I wont be able to clean it up until nearly lunch time. Before I became sick I would wake up 6:00 and finished cleaning it all by 9:30 am. 
 
     I have heard many times about how much others hate my positive attitude. The truth is that I need to be positive for myself. For the inside me. Why? I will never feel as good as I do today, tomorrow. I will never feel as good as I do tomorrow, the next day.
 
     I think when it comes to the people around me (even all of you) that when I say I am having a hard time. Or I am unable to do a task..  everyone one understands. I am often given polite warnings to slow down. It is reminders that I need to hear. It took me getting sick to have true friends, phenomenal support group and incredible doctors. I am sorry for what happened to my body. I am glad that I can get strength from all the support I am given daily.
 
*warm huggs*
       dani

TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

Chronic Pain Moderator
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Post Edited (Mrs. Dani) : 3/14/2011 1:33:23 PM (GMT-6)


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 3/14/2011 11:33 AM (GMT -6)   
I have many health issues - including heart issues, chronic pain - of course - and so forth.
 
Just my experiences - but I think most people...even wonderfully compassionate, loving people....have a terribly difficult time understanding what it's like to live w/ chronic illness and pain.  The only real exceptions that I've found to this is if you actually HAVE a long-term illness/pain.  Thus, why I think this board - and the friendships we've formed - are so important to so many of us.
 
When I first got sick, I had loads of people demanding to help... bringing us endless meals... helping in all areas of our lives and so forth.  As time went on - and I didn't get better AND couldn't be the person I was anymore (go do things...even make phone calls most of the time)... people resumed their own lives and, over time, only a small hand full of those people are still in my life. 
 
In my day-to-day life, my husband is one of the few people that see how much I struggle.  He sees the tears - behind closed doors - because of the frustration of being so limited by a chronic illness/pain.  But with most other people in my daily life - I just put on a brave front and play down most of what I go through. 
 
Babies are crying...so I'll close there. :)
--Tina
 
Main Health Issues: Dysautonomia/POTS; CFS/Fibro; Chronic Pain (back issues, migraines, carpal tunnel, among other things); Chronic Hypertension; Hypothyroidism and Hypoadrenalism; Mixed Sleep Apnea (on BiPap); Depression/Anxiety; Vitamin D Deficiency.

chatters
New Member


Date Joined Mar 2011
Total Posts : 17
   Posted 3/16/2011 12:20 AM (GMT -6)   
Very interesting topic. I have always had a very high level of pain tolerance. Even after all my surgeries and stomach removal, I did my best to keep going. When my vitamin levels dropped to a deadly level, I started complaining of the pain. It was excruciating. I was very lucky and my family doctor immediately referred me to a pain specialist. After looking at my labs and MRI results he has never questioned my pain validity. He told me I would never work again, so I applied for ssd and received it in about 5 months. My family on the other hand has had a very difficult time adjusting to my pain and illness. I was the sole financial provider, caregiver, cook, everything. My family was very dependant on me. They do not like to hear about my pain at all. I have a hard time dealing with their denial, but am assuming it is the only way they can cope, is by thinking it doesn't exist and I will get better, but I won't. They by no means baby, support, or go out of their way at all to help me. I am very scared of what will happen when I can no longer do anything for myself. I hope and pray they will step up, I have an appointment for a pain pump implant on April 4th I pray that it will give me enough relief to keep walking and moving. I am afraid to tell them I can't do things. I have always been there for them and they need me, but now I need them. I am referring to my husband and 2 adult children. Both my parents died when I was 23, I am now 44. So they are the only people I have to count on. I have found that my life is at a stand still but theirs keeps going on without me. It hurts when they do not validate my pain and illness, but I have always been strong so I will manage, I just wish I had more support. I am glad I found this group. It is nice to be able to talk to people who understand what I am going through.

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 3/17/2011 12:27 AM (GMT -6)   
Excellent topic. Thank you, Dani.
 
This is a toughy for me. I've always been a hard worker; work hard, play harder. I've always been physical, whether it was outside or inside. Most of my jobs have been physically demanding, but I have found them rewading. It wasn't until over 3 years ago that I had to try and change how I lived my life. I still tend to over do things, but the problem is things need to get done, and I have a strong sence of responsibility. It's hard for me to let other's help me, or do my work for me. It's my responsibility, there for, I'm the one who's supposed to be doing it.
 
At first alot of people didn't believe me. My pain started with a work related injury, and when it wouldn't go away, and the doctor's couldn't find anything, it quickly became a "it's all in your head", my own boyfriend at the time started to resent me, calling me a hypocondriac, that I was faking it, that I was just being lazy. I even had one of my Workman's Comp doctor's tell me "I can't find anything wrong with you, there for you're fine" "it's all in your head". It hurt, and in many ways it hurt more then the pain itself and the physical limitations it caused; I'm not one to lie, and I'm not lazy.
 
I'm lucky to have a caring, compassionate, disabled mother. She is able to understand on some level what I struggle with, and is sympathetic as a result. It's been hard to learn how to ask for help over the years, but I am learning. For so long I prided myself on being a strong, independant, single Mom... now to be so weak, was ... well, redundantly enough, weak of me. I found it shaming, and caused myself alot of mental anguish. I was angery alot in the begining. It wasn't fair, why me, and the physical limitations were frustrating. Things I enjoyed on a regular basis now meant putting myself through a living hell. I have a high pain tolerance to begin with, and now I was pushing it beyond my own known limits. I didn't want people to perceive me as weak, so I would hide my pain; grin and bear it.
 
For people that don't know me, when they hear I have chronic pain they dismiss it, or do the poliete thing "Oh, I know how you feel." If they don't realize I have chronic pain they just think I'm lazy when I ask for help unloading my grocery cart. Even some of my long time friends have been "Oh, you're just whining.", until I gave them the full story. Then it was as if a light was turned on for them, and suddenly they felt sorry for what had happened to me. My family tries to give me my space, try not to smother me, try to wait till I ask for help. For my boyfriend it's difficult. He hates to see me in pain, but he also knows that I'm stubborn and I don't want to be treated like a chinadoll; something my Exhusband always did... but his reasons for doing so were selfish. For him he was always trying to get me to stop doing things that caused me pain, even after repeat reminders that I have to fight my condition on a daily basis, because my pain interfered with his happiness, but at the same time if I tried to do what he said and not put myself in pain, then he griped about how I was being lazy, and he worked two jobs so that should be more then enough and I should be able to do everything else.
 
Alot of people have a hard time relating to me, no matter how many ill patients they've known. My other "mom" figure in my life is a nurse practioner, and even she has a hard time grasping what I've got, and what I struggle with day in and day out.
 
Like Laura, I'd rather grin and bear it, unless I'm alone crying infront of others just doesn't happen, and I hate for my family, especially my son, to see how much I hurt some days. The night my pain flared so bad I actually woke my boyfriend made me feel heartsick ... he knows what I live with, but I still hate it when he has to see me like that. I know how much I hate it when I feel powerless to help others; I don't want to cause those I love to feel the same way about me.

JCG32
Regular Member


Date Joined Dec 2010
Total Posts : 62
   Posted 3/18/2011 4:39 AM (GMT -6)   
In my life I have people who understand and people who don't. I do say how I feel and try to educate but for the people who don't understand it does not help. I try to focus on the people who do care and get support from them. I do feel people who either themselves have had health problems or have a close person who have are more caring and sensitive. When people ask me what they can do for me I just say to check in and say hi or to be there to listen. I just hate when people judge or tell a person what to do.
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