3 Things I Don’t Want to Hear When I Share About My Chronic Pain (and One Thing I Do)

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Sharing about my chronic pain with people isn’t a choice I make lightly. I flawlessly, intentionally waver on the line between hyper-awareness and invisibility. If I do tell someone it’s probably because I trust them or because it’s relevant in that moment. Nearly every time I share about my chronic pain, I feel other peoples’ discomfort immediately takes over. I blink and we’re no longer having a mutual, reciprocal interaction. Many people think they can chime in and offer their two cents. Honestly, I find it aggravating, minimizing and presumptuous. Also, I don’t recall ever asking for an opinion. I’m all for having respectful conversations and learning more about each other, but the scrutiny and judgment? Nah. I think I’m good without that.

Here are three things I really don’t want to hear when I share about my chronic pain.

Translation: Please don’t say these things to me. It’ll make me feel really small, hurt and frustrated.

1. “Have you tried x, y and z treatment?”

What I hear: “Trust me, I know better than you do.”

Last time I checked, you aren’t a doctor. Right? I have had people suggest pain meds, physical therapy, psychotherapy, biofeedback, hypnosis, nerve stimulation, etc. Chances are, you name it, and I’ve tried it. There is no cure for my condition. When you suggest solutions, while I’m sure your intentions are benign and this is how you’re displaying your concern, I feel like you’re incredibly uncomfortable and don’t know what to do with the information I just shared. I watch you review your mental film reel and quickly recall every time you felt pain and attempt to relate to my experience. Even if you don’t say it, I hear, “There has to be a solution.” Which undermines the fact that this condition is chronic — it’s enduring.

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Melissa’s Instagram post.

2. “You don’t look like you’re in pain.”

What I hear: “From my perspective, it can’t be that bad.

If you say this to me, I’ll inevitably reply, “That’s the point.”

Chronic pain is an invisible, physical illness. If you know me well, you know when I’m in more pain. I retreat. My eyes actually sink and I get really quiet. I’m distracted and distant. I can’t focus. Sometimes I’m really fidgety because I’m so uncomfortable in my own body. That’s what it “looks like” when I’m in more pain. But you’re right. Most of the time, I don’t “look like” I’m in pain. Each day I make calculated, conscientious, deliberate choices about how much my body can handle. Whether and how my pain factors into each decision is not a choice I get to have. My pain is always a factor, but it doesn’t always have to be a limiting factor. I don’t “look like” I’m in pain when I choose to run six miles, because of or in spite of a pain flare, and champion each step! I don’t “look like” I’m in pain when I’m doing research or having coffee with friends. Luckily, my physical presentation (in this context or others) isn’t for you to judge. You just get to trust me and accept me.

3. “Wow! You’re so impressive.”

What I hear: “I’m filtering your whole life through my perception of what ‘sick’ people look like.”

I’m impressive. Yep! But, not because I have chronic pain. I’m impressive because I’m determined, intelligent and a good friend. I’m impressive because I work tirelessly to
achieve my goals. When you say, “You’re so impressive,” to me it’s as if I’m watching you add chronic pain to the ledger of my life you have in your head. I feel like you’re adding extra points to each aspect of my life (that you know about). Those extra points push me over the line into your “impressive” category. I feel your mental math minimizes how incredible I am, and all of my achievements and milestones. I’m already impressive. My diagnosis shouldn’t change your opinion of me and how amazing you think I am.

I find these statements so incredibly frustrating to hear. My illness doesn’t define me, but it is a huge and real aspect of my life. Instead, I’d rather hear “I believe you.

Follow this journey on I’m Probably Overthinking This.

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? 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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6 Ways Laughter Can Be Healing for People With Chronic Illness

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Constantly coping with pain, hiding its intensity from others and trying to maintain hope despite so many fears can make living with pain a highly stressful and tricky business.

Add a seemingly endless barrage of symptoms and a brain clogged with chronic pain fog (it’s a wonder we manage at all), and it quickly becomes clear that anything that helps us see the lighter side of life can be essential.

Whatever the cause of your pain, I think the old saying is a true one: Laughter is powerful medicine and having a good chuckle really can help you cope with chronic illness and can even help reduce pain. Aside from the accompanying joy and relaxation, laughter also releases those happy endorphins that can be even more vital for chronic pain patients.

Humor helps create distance from our everyday challenges. There may be many things we long to change, but for now, a good laugh may be just the thing to lift us from those darker places, distract us from the incessant pain and help our overall well-being.

Here are some ways laughter can help heal:

  1. It can help us relax and reduces stress.
  2. It can reduce sadness and strengthen resilience.
  3. It’s a distraction from pain.
  4. It can help us be more compassionate, take ourselves less seriously and strengthen our bonds with others.
  5. It can stimulate the body and brain in a manner similar to exercise.
  6. It may help with sleep by releasing the sleep hormone melatonin.

Remember, spoonies, life is serious enough on its own, and the first person to find humor in a difficult situation wins. Let me know how you get your laughs.

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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Why the Term ‘Chronic Pain’ Doesn’t Make Me as Sad as It Used To

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Let’s face it, anything with the term “chronic” or “pain” in it can denote some sense of negativity. I’m not going to lie, you’re right about that. But this is where I think the phrase, “When all you have is lemons, make lemonade” comes into play. In my mind you have to — or else you can never get through it.

When I first was diagnosed with chronic pain and then was told, “With each additional surgery you have, you will just become worse,” I felt like someone punched me in the gut. I thought, “But I can’t control when I have surgery. If my shunt decides to stop working, I can’t help that. What is happening to my life?” I had always felt like I had such control over my life, in what I wanted and didn’t want to do. And suddenly, it was like someone took my spot in the driver’s seat and started going 100 miles per hour down the freeway and wouldn’t let me wear a seatbelt. Nothing was in my control anymore. And I couldn’t do one thing about it. I just had to go along with it.

Chronic pain, by definition, is any sort of pain that lasts longer than 12 weeks. More than 12 weeks of pain? Can that even happen? Unfortunately yes, and it’s happening right now to more people than we could have ever imagined. But I realized something after I was given my diagnosis of irreversible nerve damage that will in fact get worse with every additional operation I need (and if I’m just another statistic, I will be receiving brain surgeries every two years for the rest of my life. Sounds pretty shocking, right?)

Well, when I was given these terrible odds, I decided I had to look for some type of good in this. So I thought, “OK, but I’m as healthy as I can be right now.” When you’re chronic, I feel that’s the only thing you can truly ask for. And it’s one of the best lessons I’ve learned through having chronic pain. That is what has gotten me through it, knowing that right now, I’m as healthy as I can be, with the little control I have over my illnesses. You learn to live in the moment, and you learn to be happy in the moment. You learn about little victories.

My chronic pain journey started from the second I took breath outside the womb. I was born a fighter. I had to be. Before my first birthday, I would have a stroke, meningitis and five brain surgeries. Then over the next 26 years, I would have over 30 more, countless bouts of meningitis, and another stroke that savagely stole my ability to talk and walk unassisted. I fought it for a long time, but after awhile, I was sick of fighting something that always seemed bigger than me. It seemed like it was five steps ahead of me and always would be. I learned I would need to make sacrifices, but I could learn to make this work and be just as happy, maybe even find something out about myself in the process.

It was one night after my second stroke when I was lying in bed crying that I started thinking to myself. It was like my conscience was a separate being and it was talking to me. It said, “You can keep crying and feeling bad for yourself — and don’t get me wrong, crying can do you some good in the moment, but rarely does it do good for you days or months down the road. Or you can go out there and show your doctor who said you were never going to be able to accomplish your dreams that he was wrong. It’s your choice.” That was the point when I told myself I might have chronic pain, but I can still do anything anyone else can do. I might have do it a little differently, but it doesn’t matter. There are a thousand ways to get somewhere. As long as you’re happy in the end.

When I look at all the things I’ve been able to accomplish since that night I was crying in bed, I’m in awe. I’ve been able to graduate college, have a full time job and have a social life. I can finally look in the mirror and be happy with who I see staring back at me, because one day 10 years ago, I didn’t even recognize who I saw in the mirror. I’m happy. And self-contentment is one of the only things about chronic pain that I believe we can control.

kimi sorensen
Kimi.

Follow this journey on Blessings in Hydro.

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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To My Friend, Chronic Pain

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Dear Chronic Pain,

I would like to start out by letting you know you’re the biggest pain in the butt. You have showed me a life like no other. You have left me feeling like an outcast — few people understand what I go through. Sometimes the hell you put me through becomes too much for me to handle and I break down. I wish you didn’t take away from me all that you did. Some things we may be able to compromise on, although other things I’ll never get back. You took those things away for good.

I never imagined I would live my life constantly fighting. I didn’t realize you were part of my story until I crossed that bridge that led me directly to you. A bridge I so badly wish I never crossed. It sucks not remembering what it’s like to be pain free.

The mental pain you cause is just as debilitating. Some days I sit there dumbfounded, wondering how I can hold on any longer. It’s not a life I exactly want to live, although with some practice, I’ve learned to accept it and make the best of it. I guess a part of me should be thanking you, thanking you for the bittersweet moments you have brought me.

You showed me what it takes to create true inner strength. Until I was thrown into the life full of you, I didn’t know what strength truly was. Strength is keeping a smile on your face and going about your life with all the same responsibilities as everyone else while experiencing chronic pain every second, minute, hour of the day. Thank you for throwing me into a situation that tested me; to your surprise, I passed. Thanks for all the moments that tore at my heart. I’m talking about all the lost “friends” who weren’t there through thick and thin as they promised. I learned the only person I can truly depend on is myself; being my own advocate and source of happiness is the best medicine I can give myself.

There’s way too much you have taught me. I’ve learned lessons many never get to learn, all because they haven’t met a friend like you. You, chronic pain, are my friend. You have tested my strength and thrown me into situations you doubted I could overcome. As much as I hate you at times, you’ve showed me a side of myself I didn’t know existed. Every last mental breakdown or moment I wanted to give up on a life full of you was worth it. I hear from people all the time “I’m sorry” when I introduce you. I smile and say,”It’s OK.” It’s OK, because the person I’ve grown into become a warrior.

You may have taken away a lot from me, but good luck trying to get my dignity, too.

Thank you.

Sincerely,

The friend you never knew you had

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.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to 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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When I Stopped Fighting Chronic Pain and Began Living

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“I just want to feel like I’m not fighting an unwinnable battle for once.”

It is so hard for friends and loved ones to understand and/or grasp the battle you are fighting, because you are battling an illness and this illness is most likely invisible, making that much more difficult for you and your loved ones. The last thing I ever want you to do is feel the need to prove your pain to the people you care about or who are currently in your lives.

After my hair grew back and all my visible scars healed, my true battle with chronic pain began. Brain surgery seemed like a piece of cake compared to having an invisible illness. In the beginning of my journey with chronic pain, people believed me because the memory of brain surgery was still so vivid in their minds. But slowly, as the years went on, some no longer believed me and thought the pain was “all in my head.”

This made me mad, and I went from cycles of proving my pain to cycles of depression to cycles of anger and self-destruction to the worst cycle possible: the cycle that makes you not want to be alive. I did feel my battle with chronic pain was unwinnable, and the world and people I love would be better off without my medical issues, mood swings, depression and self-destructive behavior. I never thought I could beat something that was so much larger than me. Chronic pain has the power that air, wind and angels have: to be invisible. A gift I wish I had as the years went on and on: the ability to disappear.

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I spent over a decade fighting an unwinnable battle against chronic pain. I fought it hard. If chronic pain and I were in a boxing ring, the blood and tears would be smeared everywhere so much so that it would look like a scene from “Fight Club.” Viewers would see I was only fighting myself and creating more emotional and physical pain than I needed to. It would take over 10 years of fighting myself (thinking I was fighting chronic pain) to see that with a lot of hard work and acceptance, I could lay down my sword and concede to the disease that I was done fighting and ready to begin living. Fighting is hard and painful! Living in doctor’s offices is draining, depressing and steals our lives from us. I believed that just one more surgery, prescription or acupuncturist could cure my pain and with each failed surgery, procedure and medication, I fought harder and harder, until I had no fight left inside me and found a way to live a life with chronic pain.

I would not say we are close friends, but I know chronic pain better than I know most people and things and it is something that is always with me — I just chose not to focus on the disease. There are a lot of things in our lives we can either choose to focus on or not focus on and chronic pain is the most difficult thing I have ever had to face in my lifetime and continues to be difficult at times, but I no longer fight. Who won? Who cares? Some would say chronic pain because I never did find a cure, and then some would say I won because I found a way to be happy and healthy despite pain. Does it really matter?

You will find your way and your battle will end as well, and one day you will find your peace. However you find that peace is not up to me or any of my business. Please remember that if no one else believes you, I do and I know how hard your battle is. None of you are alone.

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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To My Family Member Who Lives With Chronic Pain

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“It doesn’t get better, you just get better at handling it.”

Recently I wrote a letter to myself 20 years ago, the me who was spiraling out of control both inside and out due to my chronic pain. I began thinking about all the people I love, and I thought of a family member of mine who also suffers from chronic pain. Until I began sharing my story with the world, neither of us knew the other had chronic pain. I have shocked a lot of friends and family members with my honesty. I guess I hid chronic pain pretty well from the people I love because most had no idea I was suffering from an invisible illness. I was shocked this beautiful, intelligent family member of mine had chronic pain as well. She is filled with such radiance, and I remember as a little girl dancing with her at one of my uncle’s weddings. Just goes to show how deceiving looks can be, especially when it comes to an invisible illness.

About a year ago, this certain family member contacted me. This letter is for her, and I hope it finds her well. I will call her Bonny.

Dear Bonny,

I was shocked, happy and sad when you wrote me about your story. My heart hurt for you because I know all too well what you were/are going through. Honestly, when I think back to the younger Jessica who was literally drowning in pain, I get tears in my eyes thinking about the former me and all the millions of people crying in bed at this very moment because of chronic pain. You do not deserve this — none of you do — and even to me, some things make no sense. Yes, my story goes from brain surgery, to years of literal hell, to wanting to die, to acceptance/learning how to manage pain naturally, to me now, at the age of 34 with a 4-year-old daughter. However, I did not snap my fingers and feel better; quite the contrary. I went from almost dying twice to living a life I never planned but made happen despite chronic pain. 

With that said, there have been many bumps in the road, and I still have some difficult days and nights.  Last night was difficult because I overdid it yesterday, and by 8 at night, my body was yelling at me. Years ago, my mind would have been in total catastrophic mode, shouting into my cells, “Great, Jessica. Now you really screwed up. Do you realize because you did so much even though you knew it would not turn out well, we are doomed? Tonight is just a little taste of what the next few days will be like — hell, the next week.” I don’t do that anymore, which is a feat in itself. I know when I wake up it is a new day, and I have control over my pain and the pain does not control me. Yes, I awoke from a bad dream I have had many nights in a row, but instead of lying there, thinking about my worries, I got up and did a 45-minute yoga practice, which helped my body and mind.

Bonny, I love you, and you have so many blessings in your life you are aware of and have gratitude for despite pain. I know if I can get to the point where I am with this invisible illness, you can. I wish I had known years ago. I wish you lived closer so I could hug you and truly let you know everything will be OK. I hope you see in you what I have always seen in you: light, kindness and a warm heart. No chronic pain, nor any chronic condition, can take away that, ever. You are not your illness by any means.

I am sure pain and worry cause you to act in ways you would not if you had no pain, but this is common. People without a chronic illness act moody or different when they have the stomach flu or an acute migraine, and everyone usually understands why he or she is acting different.  People just forget we are dealing with some form of illness or pain that never goes away, so give yourself a break, OK? When you are sad or worried or having a difficult day — or 10 difficult days strung together — email me or call me. I love you, and I am here for you. Remember this, please: you are doing the best you can, and you are not alone at all. 

I know what you feel each day and night, as do many others suffering from an invisible illness. Everything changes, nothing stays the same and a few months or years from now, you are going to be shocked at how far you have come. I am your biggest fan.

Love always,
Jessica

Jessica and her daughter sitting in a theater
Jessica and her daughter sitting in a theater

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

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.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of 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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