Pain behaviors can perpetuate stigma

Pain behaviors are all the things people naturally do when in pain. Yet these very legitimate behaviors are some of the excuses people use to blame patients and accuse them of lying. In short, pain behaviors can perpetuate stigma.

Now I don’t know about you, but there is only so much pain I can take before I can’t help but to cry out, groan, or scream. If my back hurts, I will arch it. If I sprain my ankle, I will limp for awhile. These things happen unconsciously. There are also cultural and familial influences on how we express pain. Some people are stoic while others wail loudly. These are simply differences in pain expression. Our cultural expectations also influence how we perceive others who are in pain.

Several years ago I worked at a community mental health center as a case manager. Part of my job, when I was assigned a new client, was to review their chart to familiarize myself with their history. This is where I first encountered the term “exaggerated pain behaviors”. Looking back, I wonder about the qualifications of those who wrote these notes. Most of the staff members were unlicensed with at most a bachelor’s degree in social work or psychology.  About 1/3 were licensed social workers and therapists and maybe 6 or 7 nurse practitioners and 1 psychiatrist. Nobody specialized in chronic pain management.

At the same time, I was enrolled in graduate school, earning my Master’s degree in Counseling. I learned a few of things that made me question the validity of the term “exaggerated pain behaviors”.

  1. Professionals should develop mutual trust with the client or patient.  If you can’t trust your client, you should refer them to someone else.
  2. People will behave (unconsciously) in ways that get their needs met. I was taught to pay attention when people ask for help and believe them, not to suspect them of exaggerating.
  3. A person’s culture, history, and environment will determine the way in which they ask for help. Some people are stoic in the face of pain while others complain loudly. That doesn’t mean either one is “faking it.”

It seems that pain behaviors are easily misinterpreted. What is a legitimate expression of pain to one person may be an exaggeration to someone else. While it would be nice, there is no test that can determine the presence and/or severity of someone’s pain.

It can be uncomfortable to observe someone else in pain.  Many people don’t know what to do with that feeling. In the face of something that cannot be fixed, most people walk away. It takes a special person to be with someone who has incurable pain.

I can understand this concept and still not accept stigma. It’s one thing to do nothing. It’s quite another to attack, blame, and shame the patient. We need to talk about the real pain behaviors of migraine patients. Society has learned to expect we will take medicine, use ice packs, and find a quiet, dark place to rest. Great, but that’s only a fraction of our typical pain behaviors.

For discussion:

What kind of pain behaviors do you exhibit during a migraine?
Do you think those behaviors are well-understood?
How can we change the way people interpret our pain behaviors?

 

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (19)
  • tucker
    4 years ago

    I’ve pretty much given up on telling anyone about my pain. When I have a migraine at work, folks know b/c I’m not talkative and joking. I just sit at my desk and work. But I have other chronic pain – some that I see a chiro/massage therapist for and some that I’ve asked the PCP about and we can’t figure out a cause. I think that is the most frustrating part – if there is no rhyme or reason. – like why do I keep getting leg and foot cramps that wake me up from that peaceful dreamy sleep and cause my legs to hurt for days on end? I feel like a big baby sometimes but really, walk a mile….. Heck, I’m not even asking for pain meds. I’m just asking for a why so we can fix the problem.

    I think the affect on those closest to you if most profound. I can often get short with my kids if my head hurts. If it’s really bad and I just have to rest or just say no to a somewhat optional activity, they get frustrated if I don’t attend to their needs or cook dinner or the house is still a mess after I’ve had a whole day off. AND just knowing that chronic pain is so exhausting and when I do have a day off, my plans may be scrapped just because I slept in or was depressed by the past week or whatever.

    I do wonder what they have in my chart. Does the HA doc think my HA aren’t that bad b/c I don’t whine enough in her office? Does the PCP think I’m too “sensitive”? Honestly, I’ve almost given up on the whole system. Suffering silently seems just as easy – doctors aren’t really listening and like laurawestkong says- people (eg. coworkers, friends) don’t really want to deal with you and your longstanding pain. They get tired of hearing about it, they don’t know how to fix it, and you are no fun to be around.

  • barb
    4 years ago

    My oldest friends say I look grim when I have a headache/migraine. I tend to tilt my head to the opposite side, and get very quiet, although squinter than normal. I try hard not to gripe, since no one likes to hear someone whine, but some days it’s so hard. Calling my parents, since I’m single and live alone away from friends and family, helps but I don’t want to bother them all the time. I avoid crying like the plague since it makes things worse, but it tends to be the only time I do cry since I feel so shitty.

    I have an appt. with my N.P. next week and I can’t wait to see her, catch up, then discuss a laminated card I can take when I go to the ER/Urgent care. They can only offer 16mgs of Torodal, which I carry with me anyway in a pill, or Maxalt…the last time the Torodal didn’t help at all. I should have gone back and asked for something else but didn’t feel like driving back to Urgent care…sigh…

    I don’t really want another script of Phenobarbital since the suppositories are no fun, but if it helps me sleep I’m ok with it I guess.

  • April
    4 years ago

    I found out that my doctor made remarks in my record that I was exaggerating my symptoms and pain . Is there any way you can get that removed or fight it somehow. I am trying to get disability and I don’t want that to hurt my chances. I have fibro, migraines, arthritis, and some other issues and my previous docs never believed I was telling the truth.

  • ChoctawCharli
    4 years ago

    I have been a migraineur since a TBI in 1985. I am a Veteran and was injured while on duty. I have since learned to be more stoic while in pain. But my family is more than aware when I am having a migraine. I get very quiet, I wince when sharp or loud noises are made. If I have to go get a shot, the nurses know it because my blood pressure is elevated. I used to cry. It just made the pain worse. I trained myself not to cry or get upset. Deep breathing exercises, etc help. Besides, like I “joked” on time to my headache specialist, Veterans don’t cry. LOL.

  • 4 years ago

    When faced with severe pain my first instinct is to hide the pain, because that helps keep me from falling apart.

    During a several month long bout of severe pain, I hid it from everybody I worked with. Looking back I probably should have checked myself in to the nearest ER at the very start, but I wasn’t thinking clearly at the time. After it was all over I told my co-workers what I had been through and they were shocked. They had no clue. Was I really that good at my cover-up or did they just not want to see?

    I’d like to think that I have learned from that experience. Now I try to let people know I’m not feeling well, even if it’s only moderate pain. Sometimes still though, it’s just easier to fake it than to deal with other people’s reactions. Aggressive pity can be just as bad to deal with as disbelief.

  • Vicki
    4 years ago

    I am so tired of being accused of “drug seeking” as if that means I am lying about my pain. The last time I was accused of this, I told the doctor, “Of course I’m drug seeking or I wouldn’t be here. The question you need to ask is whether I am trying to get high or alleviate pain. If I’m here to alleviate pain, then stop withholding pain medication.”

    I can identify with the woman who committed suicide in the ER as a protest to her untreated pain.

  • solove0611
    4 years ago

    Wow your story rings so true for me. I went to our small towns ER twice and was treated like a drug seeker, instead of going I now lay in my husband and i’s bed and cry for days instead-while I truly am grateful drug awareness is now initiated in our hospital’s, there is NOTHING worse than that feeling

  • Jacqui Gallo
    4 years ago

    I think all of us migraine sufferers have at one point or another felt or known that another person thought they wern’t being truthful about their migraine pain. I know i have. But I believe that as long as I know the truth, the truth will eventually come out. I also believe ignorance, while can’t be always cured, can be made less in this world. Given the chance, us migraine sufferers can educate others. That helps lessen the doubt. I must admit though, on some level, I do wish some of the non believers could walk a day in my shoes.

  • Jules2dl
    4 years ago

    My pain shows on my face; I’m pretty stoic about it, but people can always tell if I have a migraine. I also tend to absent-mindedly rub the affected side of my head, another dead giveaway.
    I think the only way we can change how people interpret our pain behaviors is by our own reaction to their interpretation. We have only the power to change ourselves, and then we just have to hope that others change their behavior in accordance to the change they perceive in our behavior.

  • solove0611
    4 years ago

    Thank you for your words you are very right, and I needed to hear it

  • Chelly
    4 years ago

    As someone who has recently been in the ED with a Hemiplegic Migraine, causing left sided paralysis, unable to swallow to enable me to self medicate and alleviate pain, and hearing a nurse tell another nurse that it was just a headache, I can empathise with those that have experienced the notion that we are “faking” it. I was told that because my BP wasn’t raised that much that I can’t have been in the level 9 pain that I had scored less than 5 minutes earlier, if I had had speech I would have gone mad, but in just had to look at her and shake my head in disgust instead!

  • onehsancare
    4 years ago

    I had a headache yesterday—not a migraine, so it was almost a relief—but it still lasted from the moment I woke up until I went to sleep, and was a level 3-4. I was supposed to have a French lesson, but when my French teacher arrived, she saw that I didn’t look good and offered to skip the lesson. I accepted, but while we were rescheduling, she said something funny and I laughed. I immediately thought, “Oh, no—does she think I’m faking the headache because I can laugh?”

  • Beth L
    4 years ago

    HATE the stigma that comes with the invisible illness of migraines. Just because someone can’t “see” my pain doesn’t mean it’s there. And it’s not just the head pain. I’ve learned to live with a constant 4 migraine. It’s when the side effects kick in that send me scurrying for my “migraine cave”. If the migraine gets higher than an 8, I end up in the ER. They think I’m a drug addict because I’m there more than twice a year with migraines AND I know EXACTLY what it takes to break the cycle. So frustrating. Right now, I’m sitting at pain mgmt waiting on round 2 of Botox. Praying for a miracle.

  • solove0611
    4 years ago

    I had my 2nd round about a month ago, how’s it going so far for you?

  • Beth
    4 years ago

    Even though my husband is in the medical profession, he still can’t understand what I’m going through. Sometimes, I’m moving in a fog…unable to find the right words and hurting all over…besides the headache. I wish I knew how to explain how I feel. Plus sometimes if my headaches is #5 or more…I get looks from family and friends like I’m whining and exaggerating…looking for sympathy when I just want someone to understand how I feel.

  • tiggmom1
    4 years ago

    I wish people would actually listen to you instead of thinking they know what’s going on. If I have a #6 I’m going to come to work. I’m not happy to be here and I’m counting the hours til the end of the day. I do that to save my sick days for #9’s. So when people see me at work and ask why I’m quiet/withdrawn etc and I tell them honestly, I always get “the look” and the “well it can’t be too bad or else you wouldn’t be at work” blow-off. They don’t know that my boss is great and has learned to “read” me and work around me, but sometimes I just have to be here. They can’t tell that I feel as though an ice pick is going thru my eye and I’m about to puke everywhere. So, do you tough it out and eek out what you can do because you have to, or take to your bed immediately just to reinforce that you truly are sick?

  • msruff
    4 years ago

    I think education is the key. People need to understand, to the best of our ability to tell them, what “migraine” means, how it feels, and how it affects our behavior. I am (perhaps) too vocal when I’m in pain, and I always feel ashamed that I didn’t just keep my mouth shut – nobody wants to deal with a complainer. Only, when I speak up, it’s more than just a complaint. I need others to understand why my behavior is the way it is, how hard I’m trying to work or converse or go out or whatever. I’m never not in pain, so being with me means being with my pain, too. I hate it, but there it is. An open conversation can go a long way to preventing misunderstandings and stigma.

  • zippy36
    4 years ago

    Last night at work I had about a #6 and holding. I did my work as usual but I was slower. Everytime I bent over my head pounded and I became nauseated. I did not look good and when able I sat with my head in my hands. I took all my meds but it was holding my pain and symptoms where they were instead of relieving them. I started to feel better by the end of the shift. My boss asked me if I was coming to work the next night. I said yes as far as I knew. He said he thought that I would be calling off because of the way I was acting and since it was sat night. ?? Was that a dig? No it wasn’t a performance. Am I being over sensitive to the addition of the word Saturday?

  • Tammy Rome author
    4 years ago

    I don’t think you are being overly sensitive. In fact, if it had been me, I would have challenged him on it on the spot. If I were you, I’d still address it with him. He needs to know how hard you tried to work through your shift with such a bad migraine. There’s no way I could work with a 6. Hats off to you! If you need some help educating him, just let me or one of the other advocates know. We’ll be happy to provide you with whatever information we can to help him understand how serious this condition really is. {{hugs}}

    Tammy

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