Regular readers know that I live with chronic, unrelenting pain. There’s never a day that pain is not my close, personal friend. The last time I can remember a pain-free day was somewhere in the mid-1990s (I was diagnosed with fibromyalgia in 1997). Every day, like the sun coming up in the morning, I have pain. Some days are less painful, other days are more painful, and then there are what I call the please let me die days where the pain, no matter what narcotics I take, is off the charts. From the top of my head to the bottom of my feet, I hurt. New pains come and go, often returning months or years later. Some pains move in and stay, just like an adult child who says, “I just need to live here until I get back on my feet.” This is my life. I accept it as it is, doing what I can, and embracing what I can’t.
Friends and family often have a hard time figuring out how to interact with me. Some avoid me — out of sight out of mind, I suppose. Some stand on the periphery of my life watching as chronic pain and illness destroy the man they love. Some dare to venture a little closer, perhaps even offering to help, but I often push them away, not wanting to burden them with my problems. They have a life, I tell them, no need to be burdened with a dying old man.
The last two years have been record-setting, and not in a good way either. Not only do I continue to struggle with fibromyalgia and osteoarthritis, but after I had my gall bladder removed in August, I am dealing with bile reflux and gastritis (bile is pooling in my stomach, not draining down my intestine as it should). I have lost 105 pounds in twelve months, don’t feel like eating, and now I am having a problem with super lower blood pressure (and this is after stopping ALL of my blood pressure medications). And then there are my low blood cell counts that no doctor, so far, has been able to figure out.
I know family and friends love me and want to be “there” for me, wherever “there” is. Some of the readers of this blog — dear folks who have over the years become my friends — offer up their love and support and I deeply appreciate their kindness and compassion. I know, as people watch the spectacle of my life, they are frustrated and discouraged, knowing that this may not have a good outcome. I resigned myself to this fact a long time ago. If not today, it will be some other day, sooner rather than later, that will be my last. Like you, I want to live until I die. While I may have moments when I contemplate suicide, most days I try to live the best life possible.
Several years ago, I read a wikihow.com article titled How to Understand Someone With Chronic Pain. I thought the points in the article might be helpful for my family and friends and for others who are intimately connected to someone with chronic pain. Here are some of the points and a highlight quote from each. I encourage you to read the entire article.
Remember that being sick does not mean that the sufferer is no longer a human being.
Chronic pain sufferers spend the majority of their day in considerable pain. If one visits or lives with a chronic pain sufferer, the chronic pain sufferer may be unable to enjoy things they used to enjoy. The chronic pain sufferer remains aware, and desires to do what they used to perform. The chronic pain sufferer feels as if they are stuck inside a body in which they have little or no control. They still want to enjoy work, family, friends and leisure activities, however much pain puts that enjoyment out of reach.
Learn the code.
Chronic pain sufferers will often talk differently from people free of constant pain. A numeric pain scale is used as a quantitative measure for identification of intensity for pain so the health care providers can measure effects of treatments. The measure describes pain on a scale from 1 to 10; the 1 is “no pain at all, feel wonderful” and 10 is the “worst pain ever felt.” Do not assume the chronic pain sufferer is not experiencing pain when they say that they are fine. The chronic pain sufferer attempts to hide the pain due to lack of understanding in others.
Recognize the difference between “happiness” and “healthy.”
When you have the flu, you probably have felt miserable. Chronic pain sufferers have experienced pain from 6 months to many years. Pain has caused them to adopt coping mechanisms that are not necessarily reflecting the real level of pain they feel.
Listen.
The previous two steps made it clear that chronic pain sufferers can speak in code or make their pain seem lighter than the reality. The next best thing that you can do is to listen to them properly, and to make it clear that you both want to hear what they have to say and that you really have heard it. Use your listening skills to decode what they’re hiding or minimizing.
Understand and respect the chronic pain sufferer’s physical limitations.
Being able to stand up for ten minutes doesn’t necessarily mean that the sufferer can stand up for twenty minutes, or an hour, or give you a repeat performance whenever. Just because the person managed to stand up for thirty minutes yesterday doesn’t imply that they will be able to do the same today…With chronic pain however, it is confusing to both the sufferer and the onlooker, and their ability to cope with movement can be like a yo-yo. The sufferer may not know, from day-to-day, how they are going to feel when they wake up, and each day has to be taken as it comes.
Leave your “pep talk” for your kids and your gym buddies.
Realizing that chronic pain is variable, keep in mind that a pep talk can be aggravating and demoralizing for the chronic pain sufferer. As already noted, it’s quite possible (for many, it’s common) that one day they’re able to walk to the park and back, while the next day they’ll have trouble getting to the next room. Therefore, it’s vital that you don’t fall into the trap of saying: “But you did it before!” or “Oh, come on, I know you can do this!”
Never use throwaway lines.
Assuming you know best by making such statements as “Ah well, that’s life, you’ll just have to deal with it”, or “You’ll get over it eventually. Until then, you’ll just have to do your best”, or worst of all, “Well, you look well enough,” etc., are lines that might make you feel done and dusted with the topic but they are both a form of distancing yourself from the person and making the sufferer feel worse and out of hope.
Check your own patience.
If you’re impatient and want them to “just get on with it,” you risk laying a guilt trip on the person who is suffering from pain and undermining their determination to cope. They probably have the will to comply with your requests to go out and about with them but have neither the strength nor the coping capacity as a result of the pain.
Be sensitive when suggesting medicines or alternative treatments.
Some may not appreciate suggestions, and it’s not because they don’t want to get well. They may have heard of it or tried it already or some may not be ready to cope with new treatment that can create an additional burden on their already over-burdened lives. Treatments that haven’t worked carry the emotional pain of failure, which in and of itself can make the person feel even lower.
Don’t be put off if the chronic pain sufferer seems touchy.
If that’s the appearance, it’s probably because they are. It’s not how they try to be. As a matter of fact, they try very hard to be normal. Just try to understand. They have been going through a lot. Chronic pain is hard to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, they do their best to cope with this, and live their lives to the best of their ability. Just accept them as they are.
Be helpful.
The chronic pain sufferer depends a great deal on people who are not sick to support them at home or visit them when they’re too sick to go out. Sometimes they need help with shopping, cooking, or cleaning. Others may need help with their kids. They may need help getting to the doctor, or to the store. You can be their link to the “normality” of life.
Is there anything you would add to this list? Please leave your astute observations in the comment section.
Bruce Gerencser, 67, lives in rural Northwest Ohio with his wife of 46 years. He and his wife have six grown children and thirteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.
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So sorry to read this post, Mr Gerencser, you’re a hero. Thank you for every post, always insightful, witty and so well-written. My morning’s not complete without a look for your latest posts.
Re: Be sensitive when offering medicines or alternative treatments.
I’d say ‘Or suggestions’ A friend almost hysterical to learn that chemotherapy would make her lose her hair, was met recently with a barrage of ‘helpful’ dismissive ‘Oh my gran/sister/friend went through that…..she wore wonderful scarves’ or ‘she now has 2inches of spiky regrowth’ or ‘she shaved it off and went out bald for months…..etc etc.’
My friend wants to scream that telling her of those who did cope wonderfully, doesn’t help her emerge from the depths of despair. She feels she won’t cope and therefore has huge guilt feelings for not taking it better! She needs empathy IMO, not thoughtless ‘power of positive thinking’.
We often don’t show our vulnerability to those around us. Then one day we attempt to let them see and we find that they can’t cope with the truth. “Have you ever been checked for Lyme’s disease?” the question is asked. My shoulders slump. People don’t understand that all you wanted was to ditch the code speak for a moment and give them an honest glimpse but they aren’t listening and you realize the moment was lost and you don’t have the energy to teach (though you can it’s just that you stop teaching eventually because the rewards are so little). So you let the moment pass and you stuff the tears back in and go back to the party-line . . . “I’m fine.”
Thank you Bruce for this post. I needed it today.
And Matilddaa, I”m so with you on the “power of positive thinking.” Some of us want to share how we feel that we can’t or won’t cope and desperately need empathy. For some reason people (even med professionals) can’t handle our despair.
Thanks for posting/shining light on this issue. If I had a dime for every time I had to explain why I won’t “risk the surgery” I could probably afford the surgery many times over 😛
I think the hardest thing is accepting that healthy people cannot grasp what 24/7 fluctuating pain and fatigue is like. If I had carrot red hair they could SEE that every day, all day, every minute, I had carrot red hair … but they cannot see that I have unrelenting 24/7 pain … so they often forget. Even those close to me cannot understand that it’s non-stop. And I’m sure that the “cover-up” I project doesn’t help – but to show how much pain I’m in, and how often (all the time) actually depressed and frustrates them and I don’t want to be responsible for that.
Then there’s always having to combat the cross-eyed looks and comments regarding my “drug use” …
(sigh)
Solidarity brother and sister sufferers
Bruce, what types of things do you suggest people say? I find myself really feeling for people in this predicament, but everything I think of saying sounds wrong. I hate it that people I know suffer so much pain. I would NEVER want to do or say anything that would make it worse for them. So I’m pretty good at avoiding saying the wrong thing (I think) but not so good at knowing something neutral or positive to say. Just curious what types of things people who “get it” say to you that are the most helpful.
I’m wondering the same thing, Heather.
Heather,
Great question. I am the first one to admit that I am part of the problem. When asked how I am doing my standard answer is fine or a slightly sarcastic s-u-p-e-r or w-o-n-d-e-r-f-u-l. This is a coping mechanism that allows me to dismiss those who don’t really want to know and are just being polite. Those who know me well usually tell me when they ask, and don’t tell me fine.
I appreciate people asking how I am as long as their request is genuine. I take the approach, don’t ask if you don’t want to know. 🙂 I would advise people to ask and watch how the person responds. Get to know their body language. Sometimes, it takes awhile for the sick person to trust you. Do they REALLY want to know? Are they going to blab to EVERYONE what is wrong with me?
Sometimes, it is just a matter of being there, not saying a word. I can’t tell the times that I have been in excruciating pain and wanted someone, anyone to stop by and sit with me. Now, some of this is fault. If I asked one of my kids to come over they would, but I’ve never been good at asking them to do things for me.
The people I appreciate the most are those who just sit and talk with me. Not only do I have chronic pain, I am also home with a Bethany. I love her dearly but our conversations never go beyond Rascal Flatts, Captain America, Sleepy Hollow, and Grimm. 🙂 It’s refreshing to have someone come over to talk…:)
Make sense?
Bruce
Bruce, thanks for posting this. I live with a debilitating arthritic condition and I am a full time caregiver for a parent with chronic pain so my heart goes out to you and your family for what you’re going through. I think that the most difficult part of living with disability for me has been feeling like a burden to those around me. I has taken me a long time to be able to extend the same compassion towards myself as I do others who suffer but that has really been key for me to be able to cope mentally with my condition and doing so has deepened my capacity to feel for the pain and suffering in others. Still, I catch myself saying and doing the “wrong” things as a caregiver from time to time out of exhaustion or just mindless habit. I’m going to print out this article and read it from time to time. The most important thing as a caregiver is just being there but it helps to be mindful of the things we say and do so as not to inadvertently compound the suffering of those we care for.
Be Well,
David Lee Stanton
This brought tears to my eyes. Without going into the details, I now, at 34 years of age had my life stripped away from me within the past year. I did it to myself, unknowingly thanks to my job but I now suffer with chronic pain thanks to many injuries and I can relate all too well to this post. I have been to hell and back and have hated God, disowned him, blamed myself, my husband, my job and everyone else in between. I also read that Wiki Chronic Pain article and suffer with severe depression these days. Oh to go back 4 years and have my life back. I’m so tired of those who have the answers and those who don’t understand nor try to. I look OK but they don’t contact me..yep.Out of sight, out of mind.
It mega mega sucks shitballs but everyday, every hour, is a struggle most days.
I keep sleeping more and more hoping I die in my sleep somehow bc I don’t have the guts to attempt taking my own life, though in my mind I am not sure how long I can live like this. I barely started living a few years ago when we left the ifb movement. I always wake up disappointed and sad to have another worthless day.
I am so glad I read this because I feel so alone even though other of my coworkers are dealing with similar problems I feel like I can’t talk to them. I feel like I bother most people so I keep to myself and though my husband tries to be supportive, it makes it even harder. Life isn’t the same. I miss the old me.
Thanks for sharing this.
This hits all the notes. And the variance between 2 different pain sufferers! I may have a good day or 2, but then have a week of not so good. Of course, when I say I’m having a good day I mean I’m having a less bad day. I can’t remember what good is like. My pain is well managed although knowing that I have bad osteoarthritis and may need more new joints…well, let’s just say I hope to avoid it.
I’m sorry you’ve been having such a physically bad year. You and Polly deserve the best!
I so can relate to these posts today . I often brood about the quack doctor who dismissed my conditions and almost killed me with her negligence, while causing permanent crippling in my feet and legs. Pain is continual in varying levels. Her answer was to throw ibuprofen prescriptions at me, which I have no receptors for. And ice my feet while propped up. I fought her for 3 years and counting, for leg braces and physical therapy. It doesn’t surprise me to learn America has the worst quality of care,as well as the most expensive. I must be my own advocate, sadly. If I had a tub to use for Epsom soaks it would help a lot. Yeah, that one conservative doctor in 2017 really screwed me good. HMOs can be a problem because of using network doctors, over choosing good ones. I got rid of her in February when I was denied a penicillin shot, I only got pills from her, and nearly died, so be aware of what can happen. ACH, Bruce, I’m sad to hear that you go through this stuff.
Medical research hasn’t done a good job of working on chronic pain.
I’m amazed at the amount of research and writing you are able to get done while enduring so much pain. You have written of being a Type A workaholic, but you must have been next level in that category….
I’m with you. I am also a chronic pain sufferer, though your situation is a few orders of magnitude worse than mine. Still. Day X might see me pottering around the house without my cane even, getting stuff done, even walking the perimeter of the grocery store. Day X+1 will find me challenged to hobble from the bed to the bathroom. My household understands. Beyond that, it’s a crapshoot.
Before our pandemic, I used to exercise in a public warm-water pool. The users tend to be older and enduring or recovering from some kind of debilitation, and many like to chat. A few regulars like to latch onto a newcomer, want to know what ails them, and then bend their ear for an hour about how their uncle/cousin/workmate totally recovered from whatever you’ve got by doing stuff you’ve already tried along with stuff that’s downright dangerous or should be shut down by the FDA. Oh, and because you don’t immediately dash from the pool to go try this exercise or buy this product or call this naturopath or whatever, you clearly don’t really want to get better. I learned to use a lot of antisocial body language to avoid getting into these conversations.
Being excellent to one another is all about details. Thanks for posting this list.
Bruce, you’ve been an inspiration to me from the moment I learned about you.
The most physical pain I’ve experienced in a long time was the result of the bike accident I mentioned in one of my essays. I guess I am fortunate in that sense: I haven’t experienced a lot of physical pain. Now, emotional pain: That’s another story!
In contrast, I have a friend who suffers from fibromyalgia as well as other physical maladies. I offer help; she says she doesn’t want or need for me to do anything.
I think people get frustrated, make dismissive or insensitive comments or simply turn away because seeing someone like my friend reminds them of their own vulnerability and makes them feel helpless. At least, that’s how I used to react toward people who were disabled–or, for that matter, homeless.
I’m still learning how to deal with my friend’s (and other’s) pain because I’m still learning how not to give into my fear of suffering in a similar way.
That sounds horrible! Did you file a complaint?
https://www.nolo.com/legal-encyclopedia/how-find-complaints-against-doctor-hospital.html
A close friend has chronic pain. What is the worst thing is that the medical community treats her as though her pain doesn’t exist and that she must be a drug abuser for wanting to control her pain.
I cannot tell you how much watching this has caused me to dislike the medical community.
Although it’s maybe not the picture that sometimes gets painted of the USA, there are many communities across the world (particularly poorer countries where medication is in less plentiful supply anyway – though in many too where it is by no means absent) where pain isn’t really managed much at all. At least medically. Because the local medical consensus is that ANY pain is better than (boo! hiss!) the risk of “addiction!!”
It is all just illogical and crazy. I am aware (through difficult personal experience I’m sorry to have to say) that poor management of pain meds can leave the medication no longer as affective as it was as its original job and the patient now having to manage a chemical dependence on top of everything else. But well thought out medication plans can deal with this well. And the objective for the medical professional should surely ALWAYS be to try and find any way to allow for some functional pain free life for their patient.
I would not wish to minimise or make light of the very real risks that DO exist in this respect – but at some stage when dealing with a patient living with constant and debilitating pain, surely the ‘risk of addiction’ ought to be pretty far from the top of the list of medical concerns? Very often I have seen the reverse.