Chronic pain and the effect on patients’ families

Chronic pain and the effect on patients’ families – KevinMD – April 17, 2014 by 

People suffering from chronic pain are often angry.

They are trapped not only by an unpleasant sensation, but also by their limited treatment options.

The experience can lead to feeling not only like there is no end in sight, but also as through there is no hope. So strong are the associated emotions that I often call this state of mind “the abyss.”

All too often, when that frustration becomes too much, it can begin to leak out, turning itself outward onto others, particularly loved ones.  

I was raised by a mother who was physically and emotionally abusive.

Growing up, I lived in a hypervigilant state of mind. I was always anxious about when my mother would snap and begin screaming

I felt powerless, and would spend endless hours trying to make sure that she was happy. The situation persisted for so long that it became normal;

Today, as a physician treating so many conditions inextricably tied to pain, I often see disturbingly familiar behavior in the office.

Certain patients will snap or yell their spouse or children right in front of me. They can be abusive to my staff. If they are demonstrating this behavior in my office, what must it be like at home?

In our chosen medical fields, we have trained and practice under a lot of stress. (The burnout rate is over 50 percent in every survey I have read.)

We are continually judged, and being criticized — and critical — can be the norm for many of us. This means it isn’t always intuitive to think about the effects of patient pain on families.

Yet when asked, spouses will frequently tear up when I begin to discuss what effect the chronic pain might be having on their family.

From the patient perspective, it’s important to remember that they are victims too.

Patients in chronic pain are suffering badly and often become socially isolated.

They need their families for emotional support; they need friends to keep them interacting with the world.

However, some are so used to being perpetually in pain and angry that they don’t recognize it as destructive.

When I ask them to go home and ask their family and friends what it’s like to live under this shadow, the responses they usually receive are intense and sobering.

Our profession puts us in a unique position to help patients and families take the early steps toward addressing this spiral and breaking these patterns.

foster a positive, non-critical tone in your office, among your staff, and with your patients.

When you see a problem, present these tools to your patients and direct them to the right resources.

Be the change that you want to create. With over 100 million people in the US experiencing chronic pain, this is a high stakes game.

See also: Keeping a Positive Attitude

Author: David Hanscom is an orthopedic surgeon and can be reached at Back in Control.  He is the author of Back in Control: A Spine Surgeon’s Roadmap out of Chronic Pain.  He blogs at The Doctor Blog.

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2 thoughts on “Chronic pain and the effect on patients’ families

  1. Karthy C

    Well well,
    Having come from a similar background. I avoided discussing much of this with my family. I actually tried to avoid relationships, and spend as little time with my family as possible. The funny thing is that even when I was Irritable with people, after they would not take no for an answer, drop by unannounced or generally needy and demanding, they seemed to seek me out more. I also did not want to inflict myself on others. I was also in limbo stupidly thinking there would be a “Cure” or improvement. I postponed so many thing until I got “Better”. Of course I never did.
    I have also spent time around other people in pain, and knew many of their behaviors were directly related to the pain. Often, when one is in pain and has to interact with people, it can get strained. So many do not understand a simple “look i am busy” or any soft suggestions that it is time to go or something similar. There have been situations where I had to actually tell someone to “get the EF out”. This was after the usual yawn, stretch, white lie,, like my bathwater is getting cold, or i need to make a call.
    The usual assumption by Physicians and Therapists anyway is that people lie about being in pain to use other people, or some pay off. They can not understand how annoying it is to have to rely on other people. Some of us limit many activities so we don’t have to. I don’t enjoy housework, but like I told some agency lately, I would have to be totally incapacitated before i would consider any “Help.’ I would rather be left alone than have someone do my dishes, even though it takes all morning on bad day. Maybe that is why I don’t get out much anymore. After deliberately avoiding any friends I used to have, I got tired off putting them off. I rarely mention my pain issue, especially since it usually leads to advice. They seem to hear about the latest “cure” on TV, the National Enquirer, or their cousin. There are so many snake oil salesmen out there. It is easier to avoid people than explain anymore. After you avoid social situations enough they stop asking. I don’t answer my phone or respond to emails. I even moved to the mountains, but people still seek me out. I would rather avoid a situation than ask for help anyway.
    I found that telling anyone about being in pain was not a good idea. They seem to use this, knowing that if someone is in pain they are less likely to get angry, or say no. I found I was avoiding confrontation leading to more confrontation. People seek a vulnerability in people, and they do exploit it. Doctors are some of the worst, they seem to be looking for a reaction, since so many of us are just Attention seeking, or have “Hysteria”. That word still irks me. It show how little progress there has been in healthcare. When I was younger and attractive, I observed that Doctors expected women to flirt or be seductive. I would not, even though I probably could have gotten whatever I wanted. I might have gotten that MRI and avoided years of pain of only I had given that Doctor a Blow Job.
    It seems to bother them when you shrug off a stupid comment, because it isn’t worth it.
    It looks like we are damned if we do and damned if we don’t. My gentle man friend would do anything is ask, but he is functionally deaf. His VA Doctor did not notice, even though he was incapable of following her instructions. I do not want him to accompany me to some things, because people misinterpret the hearing loss. People are always looking for offense so having to explain that he is hard of hearing is awkward.
    My former Therapist initial blamed me, when I conveyed my concerns. I was “not talking to him the right way”,. I explained that I felt bitchy having to yell at him, and of course it wasn’t “Profound hearing loss” it was me. Maybe I would have dealt with it more aggressively if i had not been told to check myself. It is difficult at Restaurants, where I have to repeat the waitress. I am sure that some really ignorant people think I am mean sometimes. He “Forgets” his hearing aids. His VA Doctor did not bother to check his hearing, it was not on her list. He was in denial or embarrassed or something, so my attempts to get a meeting and discuss this with his Doctor took too long. This led to more problems, apparently when someone goes with out hearing for years, the Hearing Aids don’t do much. One in five men in his demographic have hearing loss, but they don’t go by that either. His Doctor actually ignored us and changed the Subject twice when we requested a hearing test.
    His Doctor was apparently unaware of this. She just wrote him off as stupid, because he could not hear the Diabetes Instructions. Even though the hearing loss affected his blood sugar, apparently it did not matter. We spent nearly three years of countless 160 mile round trips to deal with this. It was too late, apparently at the VA if you don’t demand something in triplicate it won’t happen. So I must look like a real Bitch sometimes raising my voice to explain something to him.
    As I get older I realize that judgemental people have more problems than I do. Also so many people in Healthcare are ignorant and judgemental. If you have Chronic Pain they are always looking for Tell, or a scam. the sick thing is, that the real liars Psychopaths know how to work them. I no longer have much expectation of any humanity or decency when I try to get Healthcare, I know they have written me off as disposable, just like so many others. I am usually pleasant, often making a joke or small talk to distract from being in pain.
    I know the names of the Receptionist’s dogs, they are full of mischief and always good for a laugh or comparison with mine. Often the people in the waiting room are in bad shape, they seem to enjoy it when I engage them in conversation. I have one of those faces I guess. It has always been that way. People seem to seek me out. Sometimes it seems like they are just so eager to talk to anyone, so isolated and lonely. Many are interesting, but you can tell it has been a while since anyone engaged them in conversation. People remark on how I can essentially talk to anyone, Scientists to homeless, they talk to me.
    If I clean myself up and put on makeup to feel better, I am judged. If I wear my old sweats because I just can’t pull it together because of the pain, I am a loser. We just can’t win. I avoid explaining that my guy is hard of hearing. I look really awful when I have to raise my voice so he can hear me. It is to bad there are so many judgemental people out there. They often interpret his attitude in the worst way. Apparently no one has any idea that when someone can’t hear, they have a different demeanor. People are so quick to judge or take offense. I even worry when he goes anywhere, if he get pulled over and the cop interprets it the wrong way. It already happened and it led to thousands in Court fees, lost work and a trial. The Police officer lied repeatedly to the DA, claiming he admitted to a Crime, which was also a lie. This is the kind of world we live in. At least the Jury was disgusted, their time wasted.

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