To the Person Who Thinks Chronic Pain 'Can't Be That Bad'

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I have a friend. A poisonous friend.

When she is angry, she makes my days hell and my nights sleepless. She attacks me when I least expect it, especially if I’m lulled into a sense of security. She follows me everywhere, every day to the point where I truly cannot remember a time that I lived totally out of her clutches.

She is cruel. She cares little for family occasions, first dates, social events and the like. She perhaps forces me to stay home, or she makes sure she is right there with me, ensuring I don’t forget her presence for a moment.

She’s been a silent witness to some of the most remarkable and agonizing moments of my life.

She’s always here.

Her name is Pain.

There are many who live with her, just like me. We do our best to keep on living despite her glowering presence. It doesn’t matter how long you live with her, you never become immune to her.

Yes, we learn to continue our lives, even the mundane daily stuff that keeps it “normal.” Yes, we smile, laugh and make jokes. We make love, shop and eat, despite the anger it causes her to display, and we relish and appreciate anew the simple joys that take much to remove or lessen. Cuddling my grandbaby. Looking into her eyes. Laughing with my children and hearing them say, “I love you Mama.” They all make life with her worth living.

But let me tell you a secret. It hurts! It never stops. You wake, it hurts. You rest, it hurts. You do some basic physical activity, it hurts. You eat, it hurts.

See, constant and chronic pain isn’t something you magically get “immune” to. If I kicked you in the shins wearing my boots every 10 minutes, you would not be desensitized after the hundredth kick, would you?

You don’t get magically used to pain.

Let me tell you another secret.

I don’t have a “low pain threshold,” and neither do the huge majority of my pain family — those others I know and love who suffer daily alongside us all.  On the contrary, whenever it’s possible to physically do so, we do things like go to markets, gatherings, the park and shopping with our babies. Yes, like “normal” people! But you see, we often do it in such pain that if anyone else experienced it, they would demand pain relief at the closest emergency room.

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Normally, pain is your body’s sharp and intense warning that something is amiss. You are meant to feel it, and the amount of pain allows you to determine how serious the injury may be. With chronic pain, the pain is no different. It screams at you to notice it. It rends your heart and mind with its incessant demands to be noticed and treated. However, no matter what the pain relief is, unless there is an urgent or acute injury or illness on top of that pain, then the aim of the medical profession is to relieve it to a degree. The aim is not to take away pain. It is not necessarily realistic to do so long-term unless we are palliative. So that’s the next secret I have for you. Despite often hefty pain-relieving medications, pain is diminished to the point that we can push through it and attempt normal function, but she is still right there

Please, the next time you think to yourself about someone with chronic pain, that it can’t be “that bad,” that we are being hypochondriacs or that we are just being a baby or just trying to get out of some activity, give yourself a forehead slap!

Here’s another secret.

It’s rare for someone who lives with pain to actually tell you that she hurts so badly she fights the urge to bash her head against a wall, or scream, or just cry about the unbearable unfairness of it all. While you look on, we  protect you from our pain. “Nah , it’s fine, just a twinge.” “It’s OK, I’m just a bit sore.” Or the automatic response, “Fine thanks, how are you?”

We learn fast. To tell you of pain, and the misery she brings, often eventually creates anger, resentment, ill-treatment, impatience, and out and out rudeness. At first it’s all sympathy. But I don’t want that! Empathy! That’s what I need. Not the (not-very-discreetly) rolled eyes and mutterings.

This is why I protect you. Because to one who hasn’t experienced chronic, disabling pain, to show that I hurt appears to diminish me, to be a weakness, a failing. It’s humiliating to justify my pain, so I seldom choose to do so.

The best thing that you can do for a friend or loved one who also lives with pain is to realize that pain hurts! If we are exhausted, sore or unwilling to do some activity, it’s because we hurt, badly. Even at the moment that you helpfully attempt to change the subject, that hurts, too. When you chatter brightly about your toe or that sore back you had once, you diminish our reality and you diminish your capacity to hold anything nearing empathy for us. Instead, ask what tangible thing you can do to help. Or say truthfully, “I don’t know how that must feel, but I’m here if you need me. I believe you. I love you.”

Remember that I invariably almost over-respect any pain that you have. I will often fuss relentlessly if you are even mildly sick or hurt, because your pain is one that I feel I can help, unlike mine.

Most important, here is the final secret I will share with you.

Pain moved in uninvited. We didn’t ask for her or welcome her. She is something inflicted on us entirely against our wishes. So please don’t punish us for something we have zero control over. And learn to listen to us, and hear what may be underneath our “just a bit sore” and “It’s OK.” That means more than anything.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? 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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When People Treat My Chronic Pain Like an Imaginary Friend

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So my Grandpa George used to say this if we complained: “Oh my finger, oh my thumb, oh my belly, oh my bum…”

I guess it’s a good thing he’s not around to hear me whine.

I hurt a good portion of the time.

All the time.

And the fact is, there is a part of chronic pain you just get used to. A silent companion,
screaming in your ear. An obnoxious partner constantly nagging, obviously present, yet invisible to those you need to see it. I equate this nuisance to Snuffleupagus. Do you remember him? If you don’t, he was Big Bird’s imaginary friend on “Sesame Street.”  Actually, I am not sure he was imaginary. But every time Big Bird tried to introduce him to his other friends the enormous, fuzzy, elephant-like being would vanish.

This left everyone to believe that Big Bird had fallen off his rocker, er, uh, nest.

I always questioned why Sesame Street residents Maria and Bob were so quick to criticize Big Bird. Mr. Hooper spent the day warding off blue, cookie-stealing monsters, and listening to a beast in his trash cans gripe about all the singing, and Dracula constantly counting, but Big Bird — why didn’t they believe him? This was ironic to me. They were interacting with a giant yellow talking bird — was Snuffleupagus really that far off from a believable concept?

Next to me on the couch, or lying with me in my bed, is my Snuffleupagus. He is lurking behind every corner and wandering alongside me, burbling on and on the horrors of his company. And I try to explain him, or introduce him to my friends and family. He evades them, in spite of his enormity.

He’s unbelievably stealth.

Coincidentally agile.

Fascinating, something so huge is able to mimic a shadow or a specter.

And it’s not that I think my loved ones don’t believe me. However, I feel as though I am being humored, worse still, pitied. Should I complain, I hear my grandfather’s catchy, albeit mocking chant.

“Oh my finger, oh my thumb, oh my belly, oh my bum…”

I buckle down and put my chin up and pretend I am OK with them not seeing the massive, furry, long-nosed beast behind me. I know he’s real. I know what he’s up to. I know the truth. And like my other grandfather would say whenever we complained, “Heck, I’ve had worse places on my eye and could still whistle.”

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Me and Big Bird know all about mammoth beasts no one else sees.

They all have no idea.

The Mighty is asking its readers the following: Describe a time you saw your disability, illness and/or disease through the eyes of someone else. 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 Matt Damon Movie Line That Stops Fear of Chronic Pain From Holding Me Back

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“Sometimes all you need is 20 seconds of insane courage… And I promise you something great will come of it.” — Matt Damon, “We Bought A Zoo”

little girl on steps surrounded by snow
Jessica’s daughter Kayci.

I saw the movie “We Bought a Zoo” starring Matt Damon in the theaters when I was eight months pregnant with the amazing person seen the the right, my daughter Kayci. I was an emotional mess during this movie but blamed it on pregnancy and hormones. However, I watched it again yesterday in the comforts of our living room and once again I was crying both tears of happiness and sadness at this incredible, inspiring story about courage, love and hope. The film is based on a true story and the above quote has stuck with me for the past four years.

What are you most afraid of? I have chronic pain. Chronic pain is scary. I do believe the fear of pain is oftentimes worse than the pain itself.  I think the fear of anything is sometimes worse that what we are afraid of.

There was a time I literally had about 20 seconds to make a decision, and that was in Rochester, Minnesota at the Mayo Clinic. I had spent about two or more months there trying to cure the relentless physical pain I had been enduring for over 10 years with zero relief. The Mayo Clinic was my final straw. I knew deep down that if the doctors there could not help “cure” my pain, I was completely done trying and would just take copious amounts of pain medications for the rest of my life and give up all the hopes and dreams I had and deserved. After two months of tests, procedures, appointments, MRIs, etc. my main doctor looked at me and said, “Jessica, you have chronic pain and I do not believe there is a cure. I’m sorry. We have a program here that helps people with chronic pain learn how to manage it naturally. It is a three-month program that teaches you everything you need to know on how to live with chronic pain and be healthy and happy despite the illness. I will be honest, the program is difficult and it takes a ton of courage and work to manage chronic pain naturally, but I have seen great success rates and it can be done.”

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I just cried and cried and cried some more. I said to this very kind man: “There is no way I am going. I cannot live with chronic pain. This is an impossibility.” He asked me to think about it, as he was able to get me into the program immediately and that in itself was a gift: a gift I did not want to open at the time.

I went back to my hotel room and fell apart with a bottle of wine and tears. I called my dad and told him what the doctor wanted me to do, and my dad who is very optimistic and supportive begged me to go. I yelled and cried to him, “No, I am not going! I will find a cure. I do not want to live with pain!” The following day I awoke smelling of wine and realizing I had slept until 2 in the afternoon in a hotel room in the middle of Minnesota. The taste and smell of that wine and the swelling of my face from crying most of the night gave me strength. I had had it. I was so tired of being miserable and unhealthy and allowing pain to destroy my life.

Then came my 20 seconds of courage. I called the Pain Center I had been referred to and told them I wanted to enter the program, and it was the hardest phone call I have ever made. My life began the next week and has continued to grow throughout the years despite some bumps in the road. It took literally 20 seconds of courage and my life literally changed forever. I beg you to not allow fear to hold you back.

The Mighty is asking the following: Describe a scene or line from a movie that’s stuck with you through your experience with disability, disease or mental illness. 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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My Routine for Managing Chronic Pain Naturally

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I received a message from a very brave woman who like many others is at the end of her rope, so to speak, in her battle with chronic pain. And she does not realize the strength she has because she may think she has given up, but she is nowhere near the end. She may be just beginning, and I believe in her. She asked me to go over how I manage pain naturally and what my routine is — a question asked often and one I never mind reviewing. It took me over a year to see a huge difference in my life. I went from coming close to ending my life because of chronic pain, to living with it naturally and finding a way through the pain — not out, but through.

Some of the ways I manage pain may seem impossible and some may seem ridiculous, but bear with me. I spent a more than a third of my life on medications, getting surgeries, and watching the clock of my life tick by. That is why I commend anyone for reading my blog, because had I seen a blog about a woman who manages chronic pain naturally and is happy despite chronic pain, I would laugh/cry/scream and never read another one of her posts again. With that said, I am going to try and give a layout of the routine I utilize to manage chronic pain.

Exercise: Very scary word, and believe it or not I never exercised until I learned how to manage chronic pain naturally. I loved watching ice hockey, but I believed exercise would only increase my pain and I was on way too many medications to even fathom exercise. I started slow: Yes, my first work out DVD was Richard Simmons. I had no idea what I was doing and the thought of a gym scared me. Over time I began to love exercise and began finding so many DVDs and later classes and yoga. No one in my late teens or early 20s would believe party/chronic pain/medicated Jessica would be a runner, have a certification to teach aerobics, and love yoga.

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I exercise first thing in the morning and I listen to my body. Some days, like today, I did 40 minutes of kickboxing because I awoke very anxious. Some days, I can feel a “difficult day” coming on so I practice yoga. Either way, I think stretching is very important, whether I begin exercising or not. You do not need to run a half marathon to exercise. It took me 10 years to get to that point, and running is not for everyone.

Mindfulness/Meditation: Another scary word! I will be honest that I was very anti-meditation for a long time. It was the one thing I did not practice after I left the Mayo Clinic in Minnesota. I believed if I laid there in silence, all I would think about was pain, and I was right once I tried to meditate. However, I made meditation way too complicated! First off, I needed to have some sort of CD that walked me through a meditation. I personally love CDs that take me to the moon or gardens. Visualization is what works best for me. I love yoga nidra: the meditative heart of yoga. Talk about a life-changer. It is a meditation that puts you in a deep “sleep.”

Distractions, Distractions, Distractions: It took me years to train my brain to not think about pain. My thoughts become my reality, and the more I focus on something, whether that be positive or negative, the more I feel that certain physical or emotional feeling. To be quite honest, distracting my mind from pain has been my most helpful tool in my management with chronic pain. Pain still enters my mind on a daily basis, especially if I am going through a stressful time or things in my life are causing me to feel sad or angry. When pain does enter my mind, I quickly find something else to focus on.

selfie photo of a young girl and her mom
Jessica and her daughter.

For me that means action. I have a very difficult time just telling my mind to stop thinking about pain and lay there and try and think about something positive. I get up and I do something I enjoy. So many of us forget our hobbies and passions because of chronic pain and/or give up on those hobbies and passions. This is a double-edged sword, because your hobbies and passions are your biggest allies in your journey with chronic pain. I love being a mother and taking my daughter places or just playing at home, I love reading and writing, I love cooking and discovering new things that are healthy to make or purchase, I love being outside, I love the beach, walking around our lake, and spending time with the people in my life who make me laugh. I love helping people and I love teaching my daughter the lessons I learned through my journey with chronic pain.

My life is busy but fulfilling, and the things I do now are in pursuit of my dreams instead of pursuit of a cure. However, when I first began managing pain naturally, I went maybe 10 minutes without thinking about pain, no matter what distractions I used. I used to take a book everywhere I went. If I was the passenger in a car and I began to think about pain, I would grab that book and start reading.

People always say, “I just want to be happy.” OK, no kidding: Most of us do. But, what makes you happy? What did you used to do before chronic pain became the center of your life? Dig down deep, and I don’t care if you have to dig back into your formative years when you used to love to color. Get yourself a coloring book and start coloring — they make awesome ones for adults now. Whatever takes your mind away from pain, aside from illegal activities (joking, for the most part) do it! There should be no shame in your game. This is a process, and if you have the expectation that distracting your mind from pain will be the answer right away, you are going to be very disappointed.

Nutrition: I just started simple. I stopped eating crap. When I first began eating healthy, I used to buy Lean Cuisines and have one every night. I was also single at the time and never cooked once in my life. Now, I enjoy cooking and making healthy meals, especially for my daughter who to this day hates sugar — now that I do not understand. You can make nutrition fun: I never thought I would say that, but now it is a huge passion of mine. Try and not overthink it. I eat as healthy as I can and work on portion control and make sure I am getting fruits, vegetables and protein. I am from New Jersey, very close to Philadelphia. I love cheesesteaks, but I only have one on a special occasion. There is a lot of truth to the saying: “We are what we eat” or “Eat a bagel, feel like a bagel.”

Sleep: I get it, it is very difficult to sleep when you have chronic pain — sometimes impossible. If you are like me, you continuously look at the clock while trying to sleep, counting down how many hours you may or may not get. Put that clock away. Put it in a drawer and stop looking at the time. On the nights I cannot sleep (a living hell, I get that) I practice yoga nidra the next day. It helps immensely.

These are just some of the ways I manage pain naturally. I beg you to not expect an outcome. Just consider starting slow and seeing what happens.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

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

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? 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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When Chronic Pain is Like Invisible Yet Destructive Wind

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I awoke to the sounds of deafening wind, as it is one of the coldest, windiest weekends in our state of New Jersey that I can remember. When I say it is cold, I am serious: It is cold! For a girl who lived in Colorado for over five years, I can say it is a lot colder here than there, and the wind only intensifies this frigid air. I always say New Jersey news about weather is beyond dramatic, but for once they are right and have a story they can go over again and again, as if we could not just hear the gusts of wind and see the frozen lawns and lakes. As I lay there in bed on Valentine’s Day, I began thinking about how much the wind and chronic pain have in common.

Wind is invisible and can only be seen by the damaging, sometimes beautiful effects it has on the environment. There are huge example such as fallen trees that destroy homes, cars and communities, and then there are very small affects such as losing balloons in the wind.

My daughter Kayci and I went out yesterday to finalize our Valentine’s gifts, and she wanted a heart balloon from the dollar store. Standard: We go to the dollar store, we get a balloon. The wind was so rough that my toddler had tears in her eyes, and when I looked up we were both holding the string to our Valentine’s balloon, but the balloon itself had sailed off into the sky. On a normal day, Kayci would have been crying because her balloon was gone, begging to go back into the store to buy a new one, but she was crying because the wind was so strong and the last thing she wanted to do was buy another balloon. All she said was: “Mommy, I just want to go home, we can come back another day. I like the string to the balloon. Let’s get warm.” Now, that means it is freaking frigid outdoors!

Chronic pain is usually invisible, and people are only able to see the damaging affects it has on their loved ones by their emotions, actions and loss. I was sitting outside Kayci’s ballet/hip hop dance class yesterday and I overheard a beautiful woman with a very outgoing personality talking on the phone to her doctor about her illness: fibromyalgia. She suddenly had tears in her eyes and I could not help but reach out and talk to her about my story once she was off the phone. She looked at me and said, “You have chronic pain? But you are always so happy and outgoing and put together!” I looked at her and said quite simply: “So are you. Having an invisible illness is possibly the worst, isn’t it?”

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She replied with more tears filling up in her eyes: “No, you don’t understand. I am on so many medications from pain pills to everything else the doctors will prescribe. Some nights I have to drink wine and a lot of it just to fall asleep. I am so tired and the medications are making me sick. I am getting so weak that I cannot even pick up my 3-year-old daughter.”

I do get it, and as we talked and talked she slowly realized she was not alone. I gave her my card and begged her to check out my website and to email/call me for help and advice. She looked relieved in a sense, and thanked me and I knew she no longer felt alone. She, like so many of you are in an invisible storm. Just like the wind, we do not see the damaging effects this invisible illness causes until the damage is done.

This is why I share my story: the good and the bad. We have so much in common with the wind. Our cries and screams aloud are just like the howling and gusting of wind: We cannot see either, yet the voices are loud. The air, the wind, our higher being, all our beliefs are invisible yet they are all there.

If you believe in the wind, you should definitely believe in chronic pain.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? 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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When I Vowed to Fight Chronic Pain By Writing My Gratitude Every Day on Facebook

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I hurt. There, I said it.

That’s the first thing I think when I wake up in the morning. I hurt. The pain instantly hits me in my conscious state and I know that this day will be just like all the others I’ve had since being diagnosed with lupus and fibromyalgia 15 years ago.

For many years, when I woke up with the debilitating pain every day, I would dread the day ahead. I felt like I had been dealt the short end of the stick and resented all the healthy people in the world who took for granted how easy it was for them to just hop out of bed and get on with their day. My mindset was definitely stuck in the “negative” default setting. Poor me… (oh…puhleeze!)

As time went on, my negativity took over my life. I stopped seeing friends and socializing. I stopped leaving the house. I stopped showering. This previously positive person prior to illness had become quite a mess full of misery and despair. The pain took over my life and I lost all other identities I once had. I was the pain and the pain was me.

But three years ago, I was given the opportunity to change my life. My family, who was absolutely desperate not knowing what to do with me, enrolled me in a month-long program for chronic pain sufferers. The focus of the program was to learn how to live a fulfilling life with chronic pain.  It was there that I learned the importance of gratitude.

Because I felt that I had gone as low as I ever wanted to go, I felt like I had two choices — I could keep living the way I was living (which clearly wasn’t working for me), or I could turn around and do exactly the opposite. Instead of being consumed by the negative aspects of my life, I would appreciate the positive. And that’s what gratitude is: showing appreciation or thanks.

Since every day I wake up with the same pain, I have gotten creative in setting the tone to living a life full of gratitude and positivity. On New Year’s Day of 2016, I gave myself an assignment: I vowed to write one thing I am grateful for every day for the entire year and put it on Facebook every morning to put it “out in the universe.” I gave myself two rules for this project: I would try to make each day’s gratitude unique and never repeat, and I would do my best to not be grateful for material things (i.e. iPhone, laptop, etc.) I wanted it to be things that everyone could possibly relate to so they could think about their own gratitude.

Surely this would be an easy endeavor, right? Wrong! During the first few weeks of January, it was a cinch.  I was easily throwing out those daily gratitudes left and right:

“Gratitude Day 6:  Today I am grateful for a home to keep me warm.”

“Gratitude Day 8: Today I am grateful to be under the care of an amazing rheumatologist.”

“Gratitude Day 9: Today I am grateful to have access to clean drinking water.”

“Gratitude Day 13:  Today I am grateful for music.”

screenshot of a Facebook post about being grateful for sriracha
Lauren’s Facebook post about her gratitude for Sriracha.

The gratitudes were pouring out of me left and right and I was so confident that this 365-day project would be a piece of cake. But then I got to day 29 and I was simply stuck. I racked my brain for way longer than I should. The pain was particularly bad this day which made cultivating gratitude a little trickier than on other days. And this is what I came up with as my profound gratitude for the day:

“Gratitude Day 29: Today I am grateful for Sriracha.”

Sriracha? Really? Although it was funny and I got some silly comments to go along with it, I deemed myself doomed for the rest of the year. How cocky I was when I set out to do this!  There’s no way I can make it the whole year if I’m grateful for Sriracha and I’m only on day 29!

But I couldn’t back down now. What I wasn’t bargaining for would be that so many people were actually taking the time to read, comment and like my daily gratitudes. I even inspired someone else to do their own gratitude project! That was something I wasn’t expecting. In fact, I originally was worried people would find it annoying. But the main reason why I set out to do this was as a springboard for me to live a grateful, wholehearted and positive life for myself while living with chronic illness. So I kept going.

And what I realized was that I had to dig deeper. Even in a life full of challenges like living with chronic pain, there is always something to be grateful for. One of my favorite sayings is “Not every day is good, but there is something good in every day.” And it is so true.

Facebook post about gratitude for rain
Lauren’s “day 93” gratitude post.

In digging deeper I realized there are many things I am grateful for because I live with chronic pain. I am grateful that I now realize what is really important in life and I don’t sweat the small stuff. I am grateful for all the friends I’ve made in my Chronic Pain Anonymous group and in my Facebook support group “Attitude of Gratitude with Chronic Pain.” I am grateful that I now appreciate good days so much more because I know full well how bad the bad days are. I am grateful to have developed a heightened sense of empathy because I know how important it is to receive it on days where I feel like screaming.

This journey of gratitude has set the tone for some really beautiful and positive days full of wonderful moments and memories. Even on days where I just want to cry and hide in my bed, I’ve found that there is always something to be grateful for. The change in my attitude has been profound, and I am only on day 95.

I challenge you to develop an attitude of gratitude in your life and watch what happens.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? 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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