6 Challenges Healthy People May Not Realize Are Caused by Chronic Pain

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Chronic pain isn’t just constant pain, though that would be more than enough for anyone to handle. The truth is that chronic pain always brings friends. These added challenges are obvious, but rarely taken into consideration by “healthy” people. Remembering that like all bullies, chronic pain travels with a gang can help to better understand the life of someone in chronic pain.

When you are in pain it can be very hard to think beyond the pain and see the big picture. So in many cases, even those in chronic pain may not realize that’s what’s making them tired, sleepless, cranky, ruining their concentration, their self-esteem, and causing them to isolate themselves. So if you love someone who is suffering from chronic pain and notice some or all of these other symptoms, show a little extra compassion as you now know why they are feeling that way. Maybe even offer some insight if they aren’t aware, but be kind about it. We need kind words and gentle hugs more than anything else in the world.

1. Pain is exhausting. We have all had a bad headache, a twisted knee or a pulled muscle, and by the end of the day it is a monumental effort just to read the mail. You may not have consciously realized it, but the pain that has relentlessly nagged you through out the day can drain you as bad as any flu. Even when you try to ignore pain, it will stay in the back of your mind, screaming for attention, draining away all your energy. With chronic pain this is amplified because it isn’t just one day; it is months or even years of struggling to live with this very demanding monkey on your back. I’m tired just thinking about it.

2. Pain can cause poor sleep. You would think that after a long day of fighting with constant pain, sleep would be a great reprieve. Unfortunately, this can be just a dream (pun intended). First, chronic pain can make it hard to get to sleep and stay asleep. The pain will pull me right out of deep sleep. But even when you do sleep, the pain signals continue going to your brain and can cause sleep to be broken, restless and oddly enough, exhausting.

3. Pain can make you cranky. Chronic pain sufferers aren’t (all) just cranky buggers by nature. Pain drains me physically and mentally. When I am in pain, even the simplest things feel overwhelming and people tend to react accordingly. You may have only asked your spouse with chronic pain if they would like to go to a movie, but in their head they have considered if they can sit still that long, how much medication it would require, if they have the energy, if they will stay awake through the movie, how high their pain is now and how it might increase, if they go will it make getting through tomorrow harder, and most importantly, given all this, will it be any fun. They didn’t grouch at you for the fun of it, pain just makes it very hard to remember that everyone else is coming from a totally different perspective, where a movie is just, well, a movie.

4. Pain can kill your concentration. Most chronic pain patients fight like crazy to live a normal life.  They try to ignore the pain and go about their days, but it’s just not that easy. Even when you ignore pain, push it to the back of your brain and focus on, say, work, pain doesn’t give up. You can sit at your desk, working on your computer, trying to concentrate, while your pain plays the part of a toddler desperate for your attention. Pain will poke you, tug at your clothes, spill juice on your keyboard, scream your name and try to use your arm and leg as practice for the uneven bars. No matter how hard I try to tune it out, part of my brain is always processing the pain and it often pulls my concentration to terrifyingly low levels.

5. Pain can damage your self-esteem. Say the pain has made you tired, cranky and killed your concentration. Being exhausted all the time makes everything more of a challenge than it should be, your quick temper may have strained or destroyed once-strong interpersonal relationships, and your inability to concentrate might have hurt your job performance. You can’t do what you want to do with your time even when you try, and it seems like everyone is mad or unhappy with you no matter your efforts. Life as you know it is crumbling and all because of… you? Many pain sufferers blame themselves for these failings, remembering that they used to be able to do everything. They may see chronic pain as a sign of weakness or a personal defect they should be able to overcome. The end result is that on top of everything else chronic pain damages your self-esteem.

6. Pain can cause isolation. When you’re in constant pain, probably the last thing you want to do is attend the company party, the neighbor’s backyard barbecue, or even small gatherings with your closest friends and family. Your friends and family are still the light of your life, but the physical and mental energy it requires to go out and be social can be just too much to handle. You start to bow out of parties and cancel plans, not because you don’t want to go, but because you just can’t. Eventually people may stop inviting you, calls to make plans decline, and the scary thing is, you might not mind. The pain has slowly but surely isolated you.

What about you? What are some effects of pain that seem obvious, but aren’t?

Follow this journey on Then Everything Changed.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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What Anderson Cooper's Show About Prescription Addiction Got Wrong About Chronic Pain

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Paul Gileno is the founder and president of the U.S. Pain Foundation.

The “Anderson Cooper 360” town hall “Prescription Addiction: Made in America,” which aired May 11 on CNN, further stigmatized people with pain. I am deeply troubled and disappointed by the one-sided, biased discussion surrounding pain medication that completely disregarded the voices of people living with debilitating pain.

U.S. Pain Foundation was asked to participate. As an organization, we were hopeful this would be the start of a positive, constructive conversation bringing better resources, understanding and help to those dealing with addiction and those courageous individuals battling unrelenting chronic pain. Sadly, the outcome was not what we had hoped. Instead, the show was another slight to the pain community. It now seems U.S. Pain was invited not because they valued our opinion and wanted to bring the true story to the forefront, but rather because they wanted to show that all sides of problem were included in the “discussion.”

The apparent goal of the program was to further stigmatize people with pain by pushing an agenda — an agenda that harms those suffering with pain. The town hall meeting showed that CNN and Anderson Cooper do not think people with pain matter. The hour-long “conversation” appeared to be scripted, was extremely discriminant to the pain population and was potentially hazardous. It is a travesty that millions of Americans are treated as second-hand citizens in the opinions and views of mainstream media, government officials and society.

Mr. Cooper, a true journalist attempts to give the full picture and tries to show the whole story. They do not push an agenda or ignore an entire population of people suffering from pain. Sadly, Kay Sanford was the only person with pain given the opportunity to speak. Appallingly, both Anderson Cooper and Dr. Drew Pinsky interrupted her as she shared her experiences and tried to ask a question. They were dismissive of her pain journey. In a mind-blowing moment, those on the panel even had the audacity to say her story was the minority. This shows me CNN had an agenda, which did not include highlighting the courage or struggles of people with pain.

U.S. Pain maintains that addiction is a serious epidemic in America that also faces societal stigmatization. However, the foundation believes the pandemic of pain in America is just as important. Those with pain have to prove their pain daily, and mainstream news outlets that preach a “balanced approach to reporting” are in fact making the situation more difficult for us to have voice and stake in the solution. They are impeding our ability to have access to the pain care we need and deserve. When will people with pain matter enough? What must happen for our voices to be heard?

As founder of U.S. Pain Foundation, I am asking for your help today — right now, in this moment. I encourage all of you to contact those CNN producers who led us to believe we would have a voice at the table. Together, let’s encourage them to do a show on pain and the realities of pain. I encourage you to speak out against these so-called journalists and reputable leaders in the field of medicine (such as Anderson Cooper, Dr. Sanjay Gupta, Dr. Leana Wen and Dr. Drew Pinsky) who are harming people with pain by not sharing the whole story. Speak your mind and share your feelings on social media.

There is strength in numbers. Let’s start a public outcry for a new show about the plight of people with pain. Talk about the challenges you face accessing adequate pain care, and the difficulties you have overcome to find a new normal. This isn’t only about pain medication; this is about making sure millions of Americans are not further degraded or discredited. It is about advocating for better solutions that are covered by our health care and accessible to all.

Take this opportunity to empower and educate those who should have done better research. Let them know this type of program causes more scrutiny as well as heartache and pain for people who are already judged, marginalized and stigmatized. I am asking everyone to speak loud and speak often. People with pain matter. I repeat: People with pain matter.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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I Don't Talk About My Chronic Pain, but That Doesn't Mean It's Gone

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The Mighty recently asked people to write about a part of invisible illness no one else is aware of and why it is time to start talking about it. When you see the two Jessicas below, you see just how far I have come in my management of chronic pain. The picture on the left was taken right before I entered the Mayo Clinic in Minnesota and learned how to accept and manage pain naturally. This picture was taken about 13 years ago and is when I was at my worst. I had spent 10 years searching for a cure, trying every medication, seeing every doctor I could find, having surgeries, and finally self medicating by drinking copious amounts of alcohol in Boulder, Colorado. I no longer wanted to live and I had given up. The smile on that face is not real. I was in the worst physical and emotional pain of my life and had truly given up on myself, my dreams and my life.

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Fast forward to the picture on the right to the Jessica of now.  This picture was taken since my daughter was born and the smile on my face is real. I am not just surviving in this picture, I am alive. I have been practicing managing pain naturally for about thirteen years and if a picture can say a thousand words, I believe the above two images show a million words. While I was in the Pain Rehabilitation Center at the Mayo Clinic I learned many tools to manage pain naturally. I was in the program for about a month and although I was reluctant to accept chronic pain in the beginning of the program, the work and dedication I put into managing pain naturally saved my life, literally.

The hardest thing I had to come to terms with was their lesson to not talk about pain to our loved ones. The concept behind this is that the more we talk about pain, the more we think and dwell upon pain. It takes tremendous work to bring your attention and mind away from your pain and onto something else. Talking about pain is what is called a pain behavior: a pain behavior is anything that draws attention to our pain. I still struggle with two pain behaviors: over-doing it in a way to not think about pain, and rubbing my face, head or back when I start thinking about the pain. I could not imagine not being able to talk to my dad or my loved ones about the pain I was in.

The program was only a month and yes, I came out looking like a different person with a very different mindset than I had when I first entered the program. I stopped looking for a cure, I stopped taking medications, I stopped drinking, I exercised, meditated, and truly was a completely different person than the person my loved ones knew before I went to the Mayo Clinic.

However, I still had/have chronic pain. I was working on not talking about pain which was very difficult. The program taught us to tell our loved ones that we were having a “difficult day” when the pain was excruciating but not to use the word pain. I agree with this concept and I can honestly say it works for me because at the age of 34 I am continuing my success in my management of chronic pain despite never finding a cure. People have forgotten I have chronic pain and that is what I want people to remember.

The title of my website is No One Gets Flowers For Chronic Pain which of course is a metaphor. People who are as fortunate as myself to be able to accept pain and live the life they desire still want support and encouragement. Many of my readers email me and ask the same question: “How are you able to work when you have chronic pain? I could never hold down a job with this severe pain.” I want to be clear. In my first job as a social worker I worked 32 hours a week, not the average 40 most of our society works. I did not make a lot of money but I enjoyed what I did, I was able to take breaks to practice meditation/mindfulness, and I worked enough hours to receive benefits. Because of time management and being able to incorporate my tools in managing chronic pain naturally, I was able to be a great social worker.

Years later my daughter was born, and my dream of becoming a stay-at-home mom came true. For those of you who are not stay-at-home moms, let me be the one to tell you that being a stay at home mom is work. I think it is very important that our society and those of us who have chronic pain remember that no woman is ever “just a stay-at-home mom.” For those with an invisible illness such as chronic pain, the job of being a stay-at-home mother becomes that much more difficult despite its joyfulness.

Yes, now I am a stay-at-home mom and writer, but I still have chronic pain. Some days are really hard. Some days I want to tell the people I care about: “I am in so much pain. I know I have come a long way but I still cannot do everything you would like me to do because I have to practice moderation and listen to my body if I am going to continue to live in a healthy way despite pain.” I still get anxious and at times depressed because of pain. No, I do not talk about it and it happens so infrequently that I do not feel the need to.

However, I want/need people to understand that just because I look so much better on the outside and I am healthy, I still need support and understanding. There are reasons I say no to doing certain things and most of the time it is because of my invisible illness.  There are days I am not the energetic, happy, laughing Jessica because I am having a “difficult day.” Yes, it has been years upon years that I left the Mayo Clinic and have been managing pain naturally and no longer allow pain to interfere with my joy, but the pain is still there.

Sometimes when one stops talking about something, they feel forgotten. There is a reason chronic pain is called chronic: It never goes away. When someone loses a loved one they are given flowers, cards, food, and everyone is busy planning a ceremony and for days people comfort the person who has faced a loss. However, following the funeral and a couple weeks of mourning, for many it is as if the death never occurred. There are no more flowers, cards or dinners being made. However, the feelings of loss the person feels are still there and probably worse than they were when he or she lost their loved one. Now this person has not only lost someone they love whom they will never see again (so some believe) but have also lost the support and love that was given to them for the weeks following their loved one’s death. I think the correlation to this and to chronic pain are extremely similar.

want and I know those of you who rarely talk about pain and are managing it well want to be remembered and supported. We still have chronic pain, whether or not we talk about it. We need love, support and encouragement from those we love. Most of all, we want to be remembered.

Follow this journey on No One Gets Flowers for Chronic Pain.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Why I'm Thankful, Not Bitter, About the Chronic Pain That's Followed Me for 12 Years

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Dear Chronic Pain,

You have taken a lot from me in the past 12 years. You’ve stopped me from going to a lot of places and doing a lot of things. You’ve stopped me from having my dream career. I can’t be a nurse now because of you. You have been a constant in my life for 12 years. There are a lot of reasons I should be mad at you for more than two lifetimes. But ironically, I’m not. Yes, there are times I wish I could be cured; yes, there are times that I’m upset I can’t do the things I used to. You go everywhere I go. You follow me to the bathroom, out with friends and even on vacation. You don’t take time off — you’re working hard 365 days a year. You’re the CEO of making my life miserable. You’re attached to me. So why am I not annoyed beyond all understanding by you? Why am I not bitter? I ask myself the same question on a sometimes daily basis. 

Chronic Pain: It’s almost as if you gave me a different set of eyes. And for that I can never thank you enough. You allowed me to see life through the most beautiful eyes, and I now have the greatest view. I now see the beauty in everything. I see how beautiful it is to be able to write my entire name, Kimi Sorensen, with my fingers moving and no muscular pain for the entire time. I see the incredible beauty of my story helping other people, to keep going. I now see the beauty of a pain level staying at four instead of going to six or seven. I never thought something beautiful would or could ever come of this. I cried for days, weeks begging God to take you away. But as you know, after enough time, you get used to anything. I always swore I would never get to the point where I wouldn’t even know you were there. But I have… well, to an extent.

Chronic pain, you never go away. Chronic pain, you don’t mean predictable. You don’t mean sporadic. You don’t mean boring. But you do. You mean every one of those words that I just said you didn’t. Sometimes you are sporadic and sometimes you are boring — sorry to break it to you. Sometimes you stay at the level of four for days, and then you’re just annoying. Sometimes you go to a level of eight and then you’re maddening. This is the reason why you are so misunderstood. Everyone knows how we treat illnesses, but the one thing we can’t seem to wrap our minds around is the fact that you will never go away. So how are we supposed to treat something that is never going to get better? It’s an anomaly that we keep trying to understand.

But maybe this is a lot simpler than we thought. And maybe I’ve just cracked the code. Maybe if we just accept the fact that we aren’t going to get better, we will, because hopefully, we will be content with it all. We will stop fighting an invisible enemy that always seems to be winning. I know this seems like such a simple solution, so why haven’t we done it? I think it’s because humans are stubborn. We don’t want to accept that we are less than what we were. But maybe if we do, we will eventually become more than we could have ever imagined. I know I am now more than I could have ever imagined and I have chronic pain to thank for that. I think things through differently. I make decisions differently.

We have always been taught that if we take medicine, we are going to get better within a few days. We just need to lay low and we will be fine. So that’s why you are so hard to wrap our mind around. So why would I be saying thank you? Because you are what we can’t understand. You bring us, your sufferers, to our knees crying, yet you make us so thankful. You gives us eyes to see what we don’t have. Sometimes you let us see what we have had, but will never have again. You allow us to be thankful when we have these things, but at the same time, you allow us to see those things, and not be bitter about the fact that we don’t have them. But still, we are thankful they’re not worse. 

Yes, chronic pain, you never go away. But maybe that’s what makes you good. You force us to look our own inabilities in the eye and say I can beat you, and you then force us to do it. I know from experience if I could do everything I wanted as easily as snapping my own two fingers, I would never try to go beyond that. I would just be content with that and leave it be. But because I can’t do certain things, I say, “Watch me do it,” and then I surprise myself. And it’s a great feeling to be able to say “I did that when I thought I couldn’t.” You are an anomaly we may never understand, but maybe that’s how it’s supposed to be — maybe we are never going to understand you, but maybe that’s what will keep us on our toes and always striving for more.

From,

One of your millions of sufferers that will be OK!

Follow this journey on Blessings in Hydro.

The Mighty is asking the following: Write a thank-you letter to someone you never expected you’d thank. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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The Unpredictability of Daily Life With Chronic Pain

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The other day was a stunningly beautiful sunny day with a light breeze. Exactly what you imagine when you think of the perfect day to be outside doing, well, anything. I, however, sat looking out the window from my physical therapist’s office. My physical therapist noticed me looking and said, “What a beautiful day. Doesn’t it make you want to go for a walk? You know, that is something you can do and it’s very good for your overall health.” I produced my best fake smile and mumbled the appropriate agreement, but it really ruffled my feathers and I couldn’t figure out why. People make these comments all. the. time. Why was this one nagging at me? Turns out, this was a good question.

Who wouldn’t want to take a walk?

Healthy people may not understand that chronic illness and pain is not linear. This means that the consequences don’t always match the actions. In fact, they usually don’t. Of course I would love to go for a walk on a beautiful day. For a healthy person who starts a walking regimen, they start with a short distance for a week or two and, then over time they can walk further and further. Their progress is basically linear, predictable.  

My body, however, is completely unpredictable. Maybe today I could go for a walk down the block. Maybe I could do it tomorrow and the next day, too, but the following day I might not be able to get out of bed at all. Did I do too much? Should I have only walked every other day? Would it have mattered? Suppose this flare lasts for three days and on the fourth I actually feel really good — should I brave a walk? Or am I asking for trouble? The human mind thrashes against this lack of ability to even vaguely predict the outcomes of our actions. Given a total lack of knowledge about the consequences, how do you make these decisions? Think on that for a second. This is how someone in chronic pain lives.

The greatest emotion that this inability to predict our own outcomes produces is fear. No one ever talks about the fear. If there was some ceremony where we were all sworn to secrecy on this matter, I clearly slept through it. When I’m faced with a beautiful day and I’m contemplating a walk, my head is calculating its very own spreadsheet of costs versus benefits. Will enjoying 15 minutes of walking in the sun mean I’m down for the next day? Three days? Five days? A week? How high is my pain now? Will this help or hinder? How high is my stress? Will this help or hinder? How is my mood? How is my fatigue? Will this help or hinder? What do I need to do over the next few days? Will I be able to do it? Where am I in medication doses? Will they last the walk? Will I need more after? Finally is it all worth it? Now if you look back at all those questions, there isn’t a single one I can answer definitively. At best I can guess and more often than not, I’m very, very wrong. “Don’t you want to go for a walk on a nice sunny day?” seems like a very simple question, but to someone suffering from chronic illness and pain, we left simple behind a long time ago.

While I may have made it clear that simple things can actually be quite complicated for those who suffer chronic illness and pain, I think we still have a bad rep for being flaky, cranky, unpredictable, angry, sad and many other things “with no good reason.” I don’t deny that my moods can be all over the board. It’s the last bit that is, well, absolutely wrong.  

To start, many of us do not sleep regular sleep cycles (or at all). Our bodies may already be confused about whether it is day or night, and our minds are not attuned to time of day or month or season. Pain can block other signals and cause brain fog. More importantly, many of us spend our lives imbalanced. We have no idea if what we choose to do now will mean that we can’t move tomorrow or that we will just get to enjoy ourselves. We are that prisoner not knowing if we go through with what we’re being asked, if we’ll get sunshine and rainbows or the rack (the torture device, not a clearance sale at Nordstrom). What kind of choices would you make if you knew going to see that movie may cost you a broken arm? Going to that party may mean a broken leg? That weekend getaway would probably mean a few slipped discs? Or maybe you will get away with it…this time.

Is it any wonder our moods can vary from one minute to the next? We are scared, exhausted, depressed, anxious, lost, disheartened, and so much more. We have no control. We know what we want and it is in sight, but completely out of reach. We are desperate to get better and many of us would gladly run marathons, backward, barefoot, naked, covered in whipped cream, carrying a monkey who was playing an organ grinder if that were the path to health, but it isn’t. For some of us, moving at all often means moving backwards.  

It’s hard to fight something you can’t see or even predict. It’s even harder when your mind is struggling under all the weight. And nearly impossible when everyone around you assumes your illness can’t possibly be that bad. Well, they are right. It’s much worse.

Follow this journey on Then Everything Changed.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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3 Ways to Honor Moms With Chronic Pain

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Teething, tantrums, sleep deprivation. Being a mom is hard work — for all moms. If you live every day with chronic illness, you know how it feels to balance the normal demands of motherhood on top of the worry, fear and misery that can accompany a life with daily pain.

I’m a mom who is always reading, learning and researching everything I can in order to provide the best life possible for my son. Unfortunately, what I’ve learned since becoming a mom is that women with pain and illness are often ignored in parenting literature. In light of Mother’s Day, my hope is that moms in pain are acknowledged and that we can bring awareness to the extra challenges they bear:

1. Remember that a mom living with illness has to face many worries every day.

These worries, of course, are in addition to the fears and concerns all moms have to manage. Is this medication compatible with nursing? Did I wait enough hours after taking it to breastfeed? Will I be judged for formula feeding if I’m unable to breastfeed due to my condition? If I have to stay up all night with my teething toddler, will the sleep deprivation cause a pain flare-up? How does seeing me in pain every day affect my child psychologically? Will today be a day full of pain, or will I be able to enjoy the day with my son/daughter? If I need surgery, will I be able to recover and care for my child at the same time? The list never ends. Just offering your understanding of the unique worries a mom in pain faces can help tremendously.

2. Give her some time to rest or enjoy a favorite hobby.

Parenting takes energy and when you have pain, energy is a finite commodity. Many people are now familiar with Christine Miserandino’s spoon theory, which she used as a metaphorical way to explain lupus to her friend. While healthy people don’t always have to consider how much energy each task of their day will use, people with illness have to be perpetually cognizant of the energy everyday tasks will steal from their day. If I take my baby for a walk in the stroller on this nice morning, will I still be able to function enough to make them dinner tonight? If I lift my toddler in and out of the car seat this afternoon, will I be writhing in pain by tonight? What will I do if my pain is so bad I can’t move later and there isn’t anyone else to help care for my son/daughter?

3. Don’t assume a mom is pain-free.

Moms will do what it takes to care for their children, often at any cost to their own health. Just because you know a mom who is doing a stellar job caring for her child (however young or old that child may be), that doesn’t necessarily mean she isn’t hurting. Let us not forget that moms in pain have good days and bad days, and that sometimes, for the sake of their children, they can be really, really good at pretending.

Follow this journey on Mothering With Chronic Pain.

The Mighty is asking the following: Are you a mother with a disability or disease? What would you tell a new mother in your position? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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