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7 Things Healthy People Need to Know to Understand the 'Pain Experience'

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Chronic pain changes everything in life, most entirely invisible to outsiders. Many people do not seem to understand chronic pain or just how extensive its effects are, how exhausting always being in pain is, how displacing and uncertain, nor how hard that pain makes it to concentrate and think.

They cannot see that they have attempted numerous treatments, approaches and alternative therapies to heal and manage that pain, and know what therapies have worked or not worked for them, while the depth of loss and longing for our lives before it began becomes as constant as the pain.

There are so many considerations healthy people do not have, alongside symptoms themselves, the attitude of others, as well as our own complex inner feelings. The chronic pain patient wants those around them to empathize with their situation rather than be sympathetic, to have understanding, not pity, though sadly, understanding can be extremely rare. Not that there aren’t compassionate souls who support us, but because the “pain experience” is hard to grasp.

In the spirit of informing those who wish to understand, here are some things that can enable you to do just that to help people who have, often debilitating, chronic pain:

1. Those with chronic pain talk differently from those not in pain.

Those with chronic pain often talk differently from those free of constant pain. Many people forget that after many years of pain, we just want to appear normal — so we modify our behavior, and avoid letting people see just how much pain we are really in.

A numeric pain scale is used as a quantitative measure to identify pain intensity for medical professionals, with description of pain being on a scale from one to 10 (one being “no pain at all” and 10, the “worst pain ever felt”).

After many years of chronic pain and despite it often worsening, this scale may change and shift, instead being more reflective of individual tolerance to ongoing pain, especially in progressive conditions. What was once an eight is now a six, for instance. People can only measure pain against the most pain they have experienced.

Yet for most who may have experienced pain at this level, this was acute pain, a different physiological process, and even if was severe, it was likely still brief when compared to constant pain of CRPS, for example. This makes such subjective understanding by those without chronic pain all the more difficult.

2. Never assume the chronic pain patient is not experiencing pain when they say they are fine.

Hiding the pain due to lack of understanding in others, protecting others (from feeling uneasy or helpless, after all, no one likes seeing someone they care for in pain), or just to fit in is a natural response to ongoing pain. Accept that words are often inadequate to articulate how the chronic pain patient is feeling.

Recall a time when you were in pain, then multiply the intensity and try to imagine that pain is present 24 hours a day, every day, without any relief in sight. It’s hard to find the words for that kind of pain or experience.

3. Respect the person with chronic pain’s physical limitations.

With chronic pain and invisible illness, the uncertain nature of our fluctuating symptoms can be as confusing to us as patients as it is to those around us. Our mobility, pain levels and ability to cope with movement can be erratic, unpredictable, and frustrating for all involved.

Pain patients do 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. In many cases, they don’t know from minute to minute. This is one of the hardest and most frustrating components of chronic pain. 

Even with the most meticulous planning, sometimes the pain flares or is just too fervent. Being able to stand up for three minutes doesn’t necessarily mean we can stand up for 20 minutes, or an hour, or give you a repeat performance.

Just because we managed to sit up for an hour yesterday, does not mean we are able to do the same today.

4. Understand the difference between happy and healthy.

When you have a nasty bug or an injury that suddenly hampers your life, you may feel frustrated and miserable. Chronic pain patients have experienced pain from six months to many years, even decades, without a break. That changes you. It changes how you respond to the pain, as well as how much and how well you hide it.

Pain has caused us to adopt coping strategies that do not necessarily reflect the real level of pain we are feeling. When we see our loved ones, we are happy. Happy is not the same as healthy, but we may choose to hide our pain for others as well as ourselves. Sadly we are often misjudged for it, especially when they rarely see how excruciating and debilitating the consequences are afterwards.

Many struggle to believe you can be in severe pain if you are happy, laughing or simply not voicing the pain in the same way someone without chronic pain would expect, but voicing it does nothing for the pain, in fact focusing on it can make it worse, and only serves to make others feel uncomfortable. Laughter is also one of the most enjoyable ways to manage it and cope.

Respect that the person who is in pain is trying their best. Associating illness with exclusively feeling unhappy or thinking it impossible to be in pain and still find joy is a great source of misunderstanding.

5. Be patient.

If you’re impatient or want someone with pain to “just get on with it,” you risk laying a guilt trip on a person who is already struggling with pain, undermining their determination to cope.

They may have the will to go out or engage in another activity, but have neither the strength nor the coping capacity as a result of severe pain. A chronic pain patient may need to cancel a commitment at the last minute— please do not take it personally.

Instead, always remember how blessed you are to be physically able to walk, sit, stand, run, dance and do all the things that you can do and how sad the patient is at having to cancel [again] due to severe pain, illness and disability.

It’s important to remember that the pain is in charge, not your loved-one or associate. While you could get annoyed, it shows a complete lack of understanding of chronic pain and all they endure on a moment to moment basis.

Always be understanding if they say they have to sit down, lie down, stay in bed, or take medication right now. It means that they have no choice but to do it right now. Chronic pain does not forgive or wait for anyone. We’re already hiding immense pain, and when it flares up, it becomes unimaginable.

6. Noise, crowds and other stimuli can make pain skyrocket.

Another consequence of chronic pain altering how we process pain is that noise, crowds and other stimuli can cause intense increases in its severity.

Sound can cause pain and when that becomes noise, it intensifies. When then fused with all the other stimuli from a crowd, it can open the pain gates and overstimulates our nervous systems, making the pain skyrocket, in turn exacerbating brain fog, so we’re left even less able to explain… or escape it. It can become so complicated, we may avoid it entirely, no matter how rare or deeply we long to go out.

7. Be helpful.

Much as holding onto our independence is so dear to us, frequently we need support in more obvious ways. Living with chronic pain means we depend on healthy people to assist us or visit when we’re too pained-up and sick to leave our home.

A general “let me know if you need anything” is obviously compassionate and deeply appreciated but tends to result in our not accepting it, being too proud or even feeling shame for needing this help. But a specific question, like: “I’m going to the supermarket, can I pick something up for you?” is essentially the same offer but one we’re more likely to accept. It also doesn’t leave us feeling indebted in ways we cannot repay. We may need help with shopping, cooking, cleaning, getting to the doctor or collecting medication. Some may need help with their children. Changing bed sheets, for instance, is an immense or impossible task in pain but one so deeply appreciated.

You can be an immensely healing link to the normalcy of life and support them.

Being able to talk about the pain openly with others is important — it’s such an all-encompassing part of our lives — and not talking about it or defining us exclusively by it is, too, and it helps us feel less isolated or distanced by the pain. It offers a little taste of normal, which is, after all, what so many living with chronic pain and complex illness truly long for.

This blog was originally published on The Princess in the Tower.

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When People Offer to Pray for Me Because of My Chronic Pain

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I’ll read an article, talk to a friend, skim a forum. People want to share comfort with me, a sign of their love and care for their fellow human being going through a tough time; to share their strength. They tell me to stay faithful, that they will pray for me. But I am an atheist.

I am not an atheist because of my chronic pain or anything else that “happened,” as people sometimes ask when I tell them I’m an atheist. I was raised in a non-religious home and exposed to many ways of thinking — world religions and cultures, poverty, minority injustice, philosophy, history, empathy, books upon books upon books. At 12, I decided for myself that, personally, I did not believe in god. And that was OK. I could still be the hopeful, happy person I was, enthralled by the universe and existence, driven to help people to suffer less in this world. And I still feel this way, 11 years later, even after living the last two years in constant chronic pain.

Pain has changed what I thought my life would be. But it doesn’t diminish my worth as a person in this world, and it doesn’t change my goal of wanting to reduce suffering. That goal just needs to include reducing my own pain, too. And even though this is a different life than I thought I would live, it is still so utterly worthwhile.

So many people give me their love in the form of religion. And I accept, gratefully. I understand this is the way some people share their compassion. However, I also explain that, for me as a person who actually doesn’t share this religious connection, it might be better if — instead of praying or informing me that strength can only come from faith — if, instead, they gave me a hug. Or told me they love me. If they said that they don’t want me to hurt anymore, that it eats them up, that they don’t know what to say or how to make things better. If they met me on a human level and said, “I hear you are in pain, and I want to say that you are loved and worthwhile and important, and I want you to feel better. And if you can’t feel better, then I want to be here for you when you need me. Here is my shoulder, here is my hand. We can work together in this hard life, and you do not have to be alone.”

Personally, I still love living my life. There are books to read, adventures to be had, new things to learn and discover around every corner. This world and this universe we experience are so awe-inspiring. For a brief moment in the history of the universe, we get to open our eyes and experience everything we can, to drink in this amazing life we have to live.

I find strength and hope and happiness in the amazing people and the simple pleasures in my life. In my family. In my friends. In my kitty cat Pumpkin, and the beautiful boy I am seeing right now. In books and films and songs and games. In ice cream and strawberries and grilled cheese and delicious vegetarian meals. In cute baby animal videos, and musicals, and good coffee. In Harry Potter. In stargazing. In staying up to the wee hours of the night. In sci-fi and philosophy. In rainy days and holidays, Disneyland days and comfy recovery days. In scented baths and ice packs, ibuprophen and so many pillows. In learning. In laughter. In the promise of travel. In deep conversations. In kisses. In tight hugs, and gentle ones.

I find comfort and optimism in living in the modern era of medicine. In finding new pain solutions. In good doctors who want to help. In having access to medications and treatments that may help.

I find courage and gratefulness and love in myself. In my natural optimistic disposition, which I am so grateful for. In being able to have the autonomy I have. In feeling the full range of human emotion. In my sharp mind and my strong, incredible body, which hurts but doesn’t mean to, and does so much else for me.

I find wonder and inspiration in the world around me. In exploring, learning, creating, understanding. In mysteries and innovations. In getting swept up in passion for something I’m doing or seeing or going after. In the whole range of human experience, culture and life in every corner of this earth; geography, architecture, tradition, civilization, ways of life that highlight our similarities as well as our differences. In pondering the depths of mysterious, unexplored oceans and taking trips into tall, cavernous mountains surrounded by boundless forests of trees. In the wondrous reaches of outer space, which is both infinite and expanding, and all the journeys of scientific discovery we are embarking on through our step into this “final frontier.” In seeing people get the things they need to live better lives, or even just have better days. In this whole, big, beautiful world around us filled with wonder and possibilities.

If you find strength and hope and comfort in your religious beliefs, I am happy for you. Find it anywhere you can and cherish it, as long as those beliefs are not harmful to yourself or others. But don’t assume it is the only way, because it is not.

There are so many places to find hope and strength in this world, even when your world is painful. For me, religion isn’t one of them. And that’s OK.

Image via Thinkstock Images

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For Anyone Who Wants to 'Do Something' to Help a Friend With Chronic Pain

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The difficult part about chronic physical pain is that it is always there and, oftentimes, won’t let us ignore it. Chronic pain is the 2-year old at the grocery store pulling items off every shelf and begging Mom to buy them. It’s the power screwdriver whose reverse setting is broken and can only tighten. It’s the unrelenting desert sun that doesn’t have the capacity to allow even the smallest shade-providing cloud.

But sometimes, no matter how skilled we think we might be in coping with the emotions that present themselves along the way, we need time.

And distance. And empathy. And even distractions to just get past this particular moment in time so we can somehow be present for the next one without being pulled into a pity-producing abyss. 

That doesn’t mean we’re “suffering with pain.” I believe suffering comes from turning away from the emotions triggered by ongoing pain and hoping they’ll either go away or a magic fix will appear from around the corner. However, it does mean that we may need to gain some separation from the world until we can get through the more challenging moments and climb back onboard the mothership. 

The hardest part can be the desire of well-meaning friends and family who want to “do something” to help.

“I know a great orthopedist. He fixed my mama’s gout. Let me give you his number.”

“Jamaican dogwood tincture. It’s on all the doctor shows on TV, man.”  

“Tumeric paste. I know it sounds crazy but my cousin in Wisconsin put it under his arms when he went to bed and the next morning he was fine.”

Or, maybe, they don’t necessarily know what that entails but the specifics don’t matter. If they are being genuinely empathetic, they are sensing some of what we’re feeling and want us to feel relief for our sake.

But let’s be honest. Most folks become uncomfortable and feel helpless in the presence of someone else who’s in pain. 

I think that’s because we don’t like unresolved issues or problems with no discernible answer and we certainly expect modern medicine to be able to fix everything.

That makes the “solving” of the pain problem about them as much, if not more, than it is about us. And that’s the difference between sympathy and empathy. It’s not an act of benevolence when our relief solves a problem for them.

It can be so challenging not to have a standard reply for those times. Sometimes, we want a friend to say, “It must be so frustrating to have to face this without the comfort of knowing that there’s a cure around the corner. How can I best support you?”

Sometimes, we just want to be alone because we feel like crying or yelling into a pillow or simply breathing purposely until things subside enough to move forward. Sometimes, we need to lay still and watch “Seinfeld” reruns to take our minds somewhere else. Sometimes, we need a shot of steroids or even tequila!

But there’s no template for coping with chronic pain because it differs for each person and even differs for each individual, depending on circumstances.

People with chronic pain should surround themselves with those who, as much as possible, understand all this. Or at least, be willing to explain it so they won’t be in the dark about how you’re feeling. I think toughing it out in silence only serves to confuse those who genuinely want to be helpful, even if it’s just being available to listen non-judgmentally when we need to vent or to pour that shot and distract us with a funny story.

To our friends, please try not to be frustrated if we can’t explain what we want. Just love us unconditionally, hold our hand and bring us bacon. 

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When You Experience ‘Pain-Shaming’

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I want to talk about an experience I call “pain-shaming.”

I cried after calling the doctor’s office the other day. Afterward, in a wave of fury, I called my mother. She answered FaceTime with her usual big smile, and I could barely talk.

She knew something was wrong. I told her I had just made that dreaded call for another prescription — the stuff prescribed for “severe and disabling pain.”

The receptionist who took my call said, “It’s only been a few days since your last script. The 25th, actually — almost a week, but not quite.”

Through gritted teeth and desperate composure, I replied, “I have had chronic pain for five years. The doctor has written this for me before.”

My heart was now beating so low in my chest, I felt like I was going to birth it right then while the receptionist talked me through heart labor. After I hung up, I imagined her sitting at the office, and then arriving home, maybe to the smells of her slow cooker. Meanwhile, for dinner at my house, I’d organized braised nothing with a side of not much else.

Poor Mum, she lives away and feels helpless, so I don’t like to tell her too much about the reality of my day-to-day. But on this day, I’d had enough.

I told Mum about the enlarged eyes the women behind the counter get when they realize just how much medication I’m actually taking.

I told her I somehow now had a guilty conscience every time I saw my own doctor.

Once a prescription went missing, and all hell broke loose. There were phone calls to someone who was trying desperately to retrace every step the prescription had made.

After a 20-minute investigation, it was revealed that my pharmacist had not given me the required amount. The tension that was released from the air was palpable. Suddenly, I was back to being “nice mummy with a bob” who just needed something for her chronic pain. Back to being that well-spoken journalist with a sensible satchel and nicely-dressed kids.

I am one in five Australian adults in chronic pain, and many of us who require medication deal with this relentless conjecture on a daily basis.

I do not take pain medication for sh*ts and giggles. I am trialling a vegan diet, and I save alcohol for special occasions. I practice yoga and meditation, and I’m exploring a spiritual path. I even like crystals and salt lamps! Why? Because I have had to stare a lifetime of pain square in the face, and the only way I can deal with that is to do the best I can do with what I have left.

Isn’t it funny that we have teachers working tirelessly to stamp out bullying in the schoolyard, yet in the workplace it’s expected for us to just “harden up”?

When I took my toddlers to get their vaccinations, I watched them get jelly beans as nurses jumped around in front of them blowing bubbles. But when you are an adult getting your annual prick, you might just be told to look away.

Why does the kids’ hospital ward always have colorful walls with adult entertainers making bulldozers and Disney castles out of balloons? Where’s my Patch Adams?

We give children love, care and laughter when they are unhappy. Throw them parties, give them cake. But those of us “adulting” or dealing with sicknesses or diseases are expected just to “get on with it.”

There are certainly no teachers asking us if we are OK. No goody bag for the drive home after a colonoscopy.

Empathy is not something you can write a prescription for.

It comes from your husband bringing you a cuppa in the morning when he knows you are at your sorest; a friend who shares her lunch break with you because she knows you have a lot going on; or a neighbor who offers you their stand-up desk to borrow so you can see if it will be good for your back.

We’re not asking for much. Just some acknowledgement that we’re going through a tough time. And less Nancy-Drew-Sherlock-Holmes-eyeballing. Oh, and a letter asking, “How can I help?” with a voucher for a free neck massage thrown in for good measure — that would be fantastic.

And maybe a lollipop, too.

That would be nice.

Follow this journey on Pennyshipway.com.

Lead photo source: Thinkstock Images

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This Is What Chronic Pain Looks Like

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This picture is of me waiting at urgent care. I am in my scrubs because I just got off work.

black and white photo of woman in a medical office

I got mistaken for a nurse by a doctor who was wanting to know where the lab is located. I had no clue because I am not a nurse in this facility. He had no idea I was in pain or even a patient.

This is what people with chronic pain look like. They look like everyday people with jobs and families.

We have become so accustomed to hiding the pain that we are able to fool everyone around us.

I got up this morning put my son on the bus for school, hung out with my toddler, went to work, and now I sit in a crowded urgent care waiting to be seen because my pain is becoming unbearable today. I have pain most days, every day. Today it lingered, today it’s winning.

No one noticed that I was in pain. I put on a smile and went about my day.

When I registered at urgent care and the nurse asked why I was being seen I cringed.

I said softly, “Back pain.” I could feel the cold judgment pouring out of her eyes. Did she think I was a drug seeker, attention seeker, or looking just to get a work excuse? She can’t see the rods that are fused to my spine, or the weak joints from living with Marfan syndrome. She didn’t know that every day I am taking the max amounts of ibuprofen and Tylenol. She doesn’t know that I have spoken to my doctor about the pain and she shrugs it off saying if it gets worse we will send you physical therapy. She doesn’t know my doctor hasn’t taken more then three minutes to discuss my chronic pain. She doesn’t know that a part of me is terrified to go seek help for pain because I am afraid it will be ignored, or even belittled. It has before.

Chronic pain has its claws latched into me. I will always have this pain. But As much as I can push through it, I will. Chronic pain hides behind a smile. Chronic pain is not going to steal my days. I will keep on pushing, fighting, and living.

Some days are better then others. Some days I have to give in. I have to let the pain win.

Chronic pain might be invisible to the world around us, but it’s real. It’s a constant battle.

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If Life With Chronic Pain Was a Musical

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I hadn’t slept in a week, I was weak, I was awake…

Wait… I didn’t write those words.* Shoot.

If my life was a musical, I would be stuck in the part about three-fifths of the way through when the main character is feeling overwhelmed and hopeless. Usually, a song is sung to mark this moment, and intermission takes place right after. Then you pee, eat your candy, down a plastic cup of wine, and the musical kicks up again with a much more upbeat song so that everyone doesn’t go home depressed.**

The problem is that life is not a musical, in spite of all my efforts. Instead of us trying, being knocked down once, and giving it just one more go before succeeding brilliantly, we get knocked down over and over and over again until we are sick of picking ourselves back up. Real life also lacks a killer score and impromptu dance numbers. I guess we can’t have it all.

You could be like me and cushion this blow by listening to every soundtrack you can get your hands on and spending any extra money you may have on theater tickets. Nevertheless, like all distractions from our problems, the show ends, the lights go up, and you’re pushed back into the real world in less than three hours.

I think I may have figured out the secret, though, to this whole chronic pain debacle. This point in the musical when the lead is at rock bottom is typically when the best song is sung. This is when things really get good, and frankly, it’s the only reason the musical is even worth seeing.

Yes, times in your life that are sunshine and rainbows look great on Instagram, but they don’t lead to personal growth. No one who ever accomplished anything says in an interview, “You know, life was perfect. I was making tons of money, married my beautiful wife, and then I won the Nobel Prize and it was just so easy! I don’t understand why people complain about how hard life is!”

Triumph, success and all of our celebrated moments follow some sort of struggle or heartache. If my compelling musical argument isn’t enough to convince you just think of Batman, any character played by Liam Neeson, or actual real-life history. I’ve been telling myself since the beginning of my orthopedic issues that there must be a greater reason for all of it. After meeting one of my doctors who is single, my age and gorgeous, I was convinced my chronic pain existed so that we would cross paths, but that hasn’t panned out yet.

Still, I continue searching for the meaning of all this nonsense and will feel much better about my daily pain once I can justify it with some sort of personal achievement or happy life event. Until that day, I guess I’m just going to have to distract myself with anything I can get my hands on, whether it’s the soundtrack to a new musical or something normal people listen to, and wait this out. For the sake of the people who graciously spend time with me, and my own sanity, I hope it’s sooner rather than later.

***

*Lin-Manuel Miranda did. Thank you, Lin.

**Of course this is different in the case of the following shows: “Spring Awakening,” “Next to Normal,” “Fun Home…” those are just sad, gut-wrenching (yet still wonderful) shows.

Follow this journey on 29 Going on 92.

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