Chronic pain and the effect on patients’ families

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. Ongoing criticism of anyone is a problem — and a big one. Yet in these cases, the perpetrator often does not realize that they might be inflicting so much trauma on someone they profess to love.

I am an orthopedic spine surgeon. Why am I writing about a mental health topic? I was raised by a mother who was physically and emotionally abusive. I could never figure out why she often told us how much she loved us and then fly off into anther rage that could last for days. After interviewing my physician father a couple of years ago, I realized that she suffered from chronic pain that began shortly after she finished nursing school.

Growing up, I lived in a hypervigilant state of mind. I was always anxious about when my mother would snap and begin screaming. I did not know what would set her off or calm her down. 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; I did not realized the extent to which my anxiety was affecting me until I was a first year resident and forced to deal with my own stress management.

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. Often, the loved ones recall a pleasant environment prior to the entrance of pain and now they are in a very dark world. Even if the anger is not focused directly on the family, its tenor and after-effects can set a tense, stressful, and defeatist state of mind for everyone in the household.

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. For this, there are countless effective strategies. Many can be transformative. Learn and practice these tools yourself, and 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.

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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  • Poppy Farmer

    It’s interesting that the word angry is used. I suffer from chronic migraines that get out of control at times. And yes, the pain does get to me. I’d probably describe my reaction as frustrated – at the pain, because the meds don’t work, b/c I have pain at all, why is it there, why is it day 3 and still there, why at least can’t I get rid of this horrendous nausea then at least I could function?????

    At any rate, after a while, people do walk on eggshells around me until the phase passes, then it’s all fun and games again. I’m like Jekyll and Hyde. Ironically, when I finally decided to speak with a counselor about it, I was labeled with an anxiety disorder – good grief. I’m not anxious – I just want to know how *I* can handle this pain so I don’t make the rest of the world around ME anxious. Though I will admit, at least my counselor offers much more than talk therapy. She has little tricks for pressure point therapy and such that we are trying for nausea and pain.

    But I also know in my heart that since my migraines started while I was pregnant, my children do not know any other mother than the one who has to sleep incredibly long hours, miss after school activities, screams at them on a moments notice b/c I’ve had it up to here with something I didn’t ask for and a handful of medication can’t fix. This topic comes up on migraine boards often – how do your migraines affect family and friends. Yeah, hmmm you plan things with hesitation, bail on your kids or family or friends, and girls’ nights out, well, forget about them. The lights, the alcohol and the loud music – the makings of a migraine…..

    On the flip side, I also think that MAYBE it’s helping my kids to be more compassionate (though that’s always hard to tell with teen boys!). One son has experienced migraines already so he knows what they feel like and the other has asthma. I think it is easier for us to discuss problems in a more open way. Counseling has helped me to give them some ideas to use for their own needs and it has helped open up our family discussions on what needs to be done to empower each of us through bad days.

    But I will say this, I learned about a seeing a counselor ONLINE in a migraine support group. Maybe my PCP mentioned it at one time, but my headache specialist certainly never did. I asked my PCP for a referral b/c I was at my wits end and just felt like *I* needed to gain control of my own health. So for all the docs out there – PCP, Specialists, etc. PLEASE – make the recommendation. If you can see the anger/frustration/whatever rising up in you patient, it’s a fact that unless they live alone and enjoy being a hermit and living in a cave of self-pity, at some point, they will probably need help figuring out how to deal with it. And if the patient doesn’t want to go, suggest it to the family. It might take some time getting used to the idea, but eventually they will come around. There is no shame.

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