12 People Describe What It's Like to Live With Chronic Pain

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While experiencing physical pain from time to time is part of life, chronic pain is something entirely different. With chronic pain, pain signals keep firing in the nervous system for weeks, months, even years, instead of stopping eventually like with acute pain, according to the National Institute of Neurological Disorders and Stroke. Because a large misunderstanding of the disorder still exists, people with chronic pain often get dismissed as “dramatic” or “lazy,” when this couldn’t be further from the truth.

To better understand this chronic disorder, The Mighty asked people with chronic pain to describe what it’s like to live with it.

This is what they had to say:

1. “[It’s] like having mono and the flu combined. Your body feels like concrete — heavy and impossible to move. You know the type of flu… where the sheets hurt your toenails and your pillow feels like rocks under your throbbing head? The kind when you can’t stop writhing in pain because it hurts so bad, but it also hurts to move? Like that. On a regular basis. No joke.” — Tracy Boyarsky Smith

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2. “I wake up feeling like I’ve been in a cage fight and have fire ants arguing over nonsense in my joints. Every movement is heavy and protested. Despite the pain I look fine and happy on the outside, but I’m counting down the minutes till I can go home and crawl into bed and just not have to pretend anymore.” — Molly Kelsey

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3. “My pain has been mainly neurological. I describe it as like shaking a bottle of fizzy water and keeping the cap on. The busy pressure is often what my mind is like.” — Ric Salinger

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4. “I don’t know what it’s like not to be in pain, to have a refreshing, unbroken sleep, to do things without causing pain somewhere. On a bad day, I can’t do my hair because it hurts too much.” — Mirella Joy

5. “[It’s like] walking painfully through a jungle, completely engulfed in a thick, disorienting fog, and you feel you need to sit down and rest, and your body won’t let you, but nor will it let you continue.” — Laura Vago

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6. “On a good day I wake up with the pain most people would stay home from work or school for; on bad days I live in a bathtub to relieve the intense pain and spasms; on the worst days I’m in the hospital on IV fluids and pain meds. It’s amazing how well one can fake feeling OK on our so called good days.” — Gretchen Lightcap McLachlan

7. “On my best days, it’s an unyielding static of discomfort. Your week’s allotment of energy can be used up in a single morning so you’re sure to make every moment count. When a flare hits, every joint aches and vibrates incessantly. You feel like you have been encased in quicksand, and the fatigue hits you like a strong sedative.” — Lisa Dickinson Gastaldo

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8. “Imagine someone with a rubber mallet keeps dropping it on your bare foot repeatedly, over and over, for an hour. Now imagine that in every joint. That is what my pain is like, often on a daily basis, for most if not all of the day.” — Julie Pruitt

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9. “It’s the nagging person in your life who never goes away no matter how much you tell him to or try to ignore her.” — Alison Taylor

10. “It’s like having a small child constantly tugging at your sleeve, desperate for your attention, and you do all you can to keep him happy and stop him from having a toddler tantrum. Sometimes, however, you can no longer reason with him and he has a full blown tantrum and you just have to leave him to get it out of his system.” — Winifred Kakouris

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11. “I’m 37 years old and at a healthy weight, and my body feels like I’m 90 years old. It hurts to move, washing my hair hurts… it’s a good day if I can lift my arms.” — Melissa Cote

12. “It’s like watching a Christmas tree with the twinkly little lights going off and on, with the twinkly lights being the aches and pains you feel in your muscles.” — Lakshmi Rajagopalan

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17 Ridiculous Things I’ve Said Due to ‘Brain Fog’

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For as long as I’ve been living the spoonie life (16 years), I’ve had these weird little bouts of fogginess. The combination of chronic pain, fatigue and lack of sleep take a huge toll on the brain, and sometimes it’s really difficult to say words, let alone form sentences.

When it comes to brain fog, I’m particularly bad at remembering words and/or using the correct word. This used to annoy me so much when I was at University as I studied English at Masters level. I sometimes simply couldn’t muster up the most obvious word and would end up really frustrated and paranoid about what my classmates thought. It still infuriates me to this day, but luckily if my boyfriend (BF) is around, he can finish my sentences for me. Unless I attempt to battle through the fog and make up a word, then he just laughs.

I also suffer with short-term memory loss, poor concentration and general haziness. It’s not the best; it makes me really angry, but it can also be pretty hilarious.

I’ve been compiling a list of the ridiculous things (when I remember to write them down) I’ve said due to brain fog, and I thought I’d share them so we can all have a little giggle.

1. “Shut the window doors.”

I wanted the curtains closed. The curtains will forever be the “window doors” to us.

2. “Where’s the iPad?”

I was using it. I do this a lot, with everything.

3. Me: “Can you pass me that thing. That big iPad.” BF: “You mean the laptop?”

4. “I like diamonds, not those scuba sercomia.”

I meant cubic zirconia.

5. “There’s a gap in the wordos.”

The curtains weren’t closed properly.

6. Me: “I’ve got them sneezing meds in my bag.” Friend: “Antihistamines.”

7. Me: “A lot narrower than his fed, fred, forehead.”

8. Me: “Could you pass me the hook, please? The telly hook.” BF: “The HMDI cable.” Me: “Same thing.”

9. Me: “I’m taking one of these. I have to let it melt on my face.” BF: “You mean ‘on your tongue.'” Me: “My tongue is on my face.” BF: “In it, but OK.”

10. “His hair is skwed” — hysterical laughter — “I meant his head is square.”

11. Me: “Why didn’t you have a beer in the hospital?” BF: “You mean the restaurant?”

12. Me: “I’m just lulling you into a false salsa security.”

13. “Little gem lep-see.”

I meant “little gem lettuce leaves.”

14. Me: “You can’t reheat chucking chocolate.” BF: “‘Cooking’ chocolate.”

15. “He’s put it in a tub of cot water.”

Hot water, I should have said “hot water.” Oops.

16. “I’ll only eat ice cream with a fork. I mean a knife. Oh for f*ck’s sake, the other one.”

The amount I talk about spoons, and I couldn’t find the bloody word.

17. Me: “I can’t help it if my face doesn’t speak properly.” BF: *Looks at me.* Me: “My mouth then.”

I hope you had a little chuckle at some of my brain fog moments. I’m sure there’ll be more to come.

Follow this journey at Sarah in Wonderland.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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 the People Who Think I'm Not in Pain Because I'm Smiling

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First, I had a career. I had hobbies, one of which was exercising and taking all kinds of classes like kickboxing, yoga and Pilates. I also had a husband who could not handle my recovery, so he moved on. I am a mother of a beautiful 25-year-old daughter. I have a Pomeranian that needs to be fed, walked and cared for. I have family I love. 

I suffer from degenerative disc disease and have had a triple fusion in my cervical spine, as well as three back surgeries. My neck has never healed properly, and my left arm is almost always hurting on some level. I have had people say to me, “But you look fine,” and I have been asked if I am disabled as I parked my car in the handicapped spot.

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I would like people to know that to survive and try to get out in the world, I have learned to hide my pain, do my hair and get out every once in awhile. If I am smiling, it does not mean my pain isn’t there. I have limited energy, so if I go out for a few hours or to a family event the next day, I will be tired. I have lost friends because they were either acquaintances or didn’t want to be around a “sick person.” 

The isolation can at times be worse then the pain itself. I can’t even count how many family parties I have missed entirely or have had to lie down and ice my neck and take a nap so I could drive myself home. There are times I have to cancel plans at the last minute, which I used to feel guilty about, but I have learned to know my limits. 

I have depression due to all of this, wondering why this happened to my body. I miss the energy I used to have. People say, “At least it isn’t cancer,” and I do agree, but that does not mean I don’t have a hard life. 

I wish people had more empathy for anyone who has a chronic illness of any kind. I wish they knew how much I miss working and socializing and that I would give anything to have the “old me” back. I feel guilty that my daughter worries about me so much and that I can’t drive far or my neck will go into spasms. The list goes on, but this is my new way of life, and I am fighting and doing my best to survive.

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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To the People Who Ask Why I Play This Sport When I Have Chronic Illnesses

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Recently, I’ve been asked multiple times why I’m playing a sport if my illnesses are as bad as I say they are. I’ve been asked why my doctors are allowing me to continue being active and playing a high-risk sport. That I shouldn’t be mobile. That I shouldn’t be able to ride horses. That because of my diagnosis, I should be lying in bed.

That is something I don’t agree with. I am an equestrian. I ride horses because it’s my passion, and I’m going to follow my passion. Riding horses and being around horses is therapeutic. The barn is the one place where I don’t have to pretend to be happy. Rather than having the need to hide that I’m in chronic pain, I’m actually able to forget the pain I’m in. It’s the one place where I’m not judged based on my appearance. Instead, it’s my ability. I feel as if I’m an equal. It’s an equal “playing field.”

Yes, riding with illnesses is challenging. I’m not denying that. But you learn how to cope. You ride the days you feel well enough. You listen to your body closely. You learn signs that you may be pushing yourself too hard or you may need to take a break. You listen to your doctors, but you also have to listen to yourself. For me, riding horses is beneficial to my body. It’s the right amount of exercise my body needs to manage my pain disorder. It’s not a high-impact sport (something I cannot do). It keeps my blood circulating enough to avoid turning purple.

Just because I have illnesses doesn’t mean I should have to put my life on hold. I’m young. I should be going out with friends, attending campus functions and doing the sport I love the most. I should be living my life. My illnesses do not define who I am. My illnesses do not stop me from achieving. My illnesses do not control me. I may have to do something differently than someone else. I may have to try more times to get the same result as someone else. But that doesn’t make me any less of a person than someone.

While fighting illnesses, you learn to cope. You cope with the pain you’re in. You adapt to whatever life decides to throw at you next. You adapt in hopes to keep your life somewhat the same. You continue living the life you want. You do not let anything stop you. There may be setbacks, but you keep going. You do what you can to live as “normal” of a life as possible. You persevere. You’re not your illnesses. Your illnesses do not define you.

You define yourself.

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 Chronic Pain Is Lonely

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For the last three years, I have been suffering from chronic pain due to a botched stomach surgery that has led to clusters of stomach ulcers (nine at one time), scar tissue adhesions and other issues that are only being guessed at by my many doctors and specialists. I’ve been prescribed medication to minimize the pain, but even that cannot eradicate the constant pain I feel.

My life has changed; I have changed. Once I had energy, clarity of mind, and of course, a mostly pain-free existence. For those who knew me before, and know me now, there are certain points I need to clarify. When I explain my situation, I’m not asking for pity or free passes, I’m telling you the facts of my life. Here goes…

I’m in pain a lot of the time. You won’t necessarily know because I’ve learned how to “mask” in public. “Masking” my pain is an essential way for me to continue to be social and involved. I want to be present with and for you, so I’ll deflect conversation from me to concentrate on you. It’s not that you are an effort, but the masking is. I want to forget the pain; I want to minimize it. I want my life to be about more than my physical sensations.

I’m tired. No, not tired, exhausted. I wake up every morning with pain, and often my sleep has been fitful and interrupted. But it’s not just about lack of sleep but the sheer effort it takes to endure the pain. I need a lot of down time, and often my weekends are about rest. I can’t work a full week, and I certainly can’t be sure when the pain will become intolerable and I must rest or I’ll collapse. I’m not being dramatic. My energy is limited, and I try hard to keep my head up. Extraordinary circumstances for me are working full-time two days in a row or attending a social event. These things cost me. Despite the cost, I’m working toward managing my energy, and I still want to be social — no, I need to be social.

Chronic pain is lonely. Pain is very inward-looking. When I’m in pain, I’m forced to be less involved. It’s not just the time I need to rest; pain is isolating. No one can feel what I feel, and it’s not something I’d wish on anyone. Because of the medication I’m taking, I can’t drive. I’m socially isolated as well as physically.

Like anyone, I have up days. Sometimes, somewhat miraculously, I’m not in pain or I’m managing my pain successfully. I try to take advantage of these times, and I can be quite productive. These are the best days. However, it’s not sustainable for me at this time, and I’m more than likely to experience more pain afterwards. The return of pain is always disappointing, despite its predictability.

It’s not about you. You’re great. I like/love you and I want you in my life, but if I’m in pain, I can find it hard to connect with the outside world. If I retreat, it has nothing to do with you. I want you to know that you do help. You do make my life better.

I miss my healthy self, and it’s hard to let go. Accepting chronic pain is hard. I’m constantly judging myself for not being my healthy self. Things I used to do simultaneously feel completely unachievable. I’ve not yet forgiven my body for sabotaging me. But sometimes this loss of self causes me to take on tasks I really can’t cope with. My body sabotages me, and I sabotage it.

The light on the horizon has changed. There is no cure for my pain. After a few years trying to find a cure, it has become clear there isn’t one and I’m going to be permanently disabled by pain. Now the light at the end of the tunnel isn’t about cures but management and acceptance.

Sometimes I’m not all there. The medication I’m on is strong, and often I suffer from brain fog from it. Often the pain itself causes me to lose focus and forget things. It’s not that I’m not interested, because I am. Please understand that I feel the difference, and it saddens me. So if I forget something, forgive me and please don’t make a big deal out of it. I’m already embarrassed by the dulling of myself.

A lot goes on behind the scenes. Trips to doctors and specialists take up a good deal of my calendar. It takes time and energy just to meet these commitments. There’s often an emotional toll as well.

I’m trying, I really am. I want more than anything to be present and living life. What I want from you is reassurance that I have the space I need to deal with my health. What I want from you is the acknowledgment that although I often cancel out from social and work opportunities, you will keep inviting me. I’m here, and I’m doing my very best.

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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When You Find Out the Chronic Pain You Feel Isn’t ‘All in Your Head’

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You’ve experienced extreme pain for most of your teenage years and what few adult years you’ve lived so far. When you talk to the doctors, their response is, “Oh, that’s normal,” and you listen to them. I mean, they did go to medical school for years, so they obviously know everything medical. Right?

That was my first big mistake of my adult life. I figured my pain tolerance was just a lot less than the average woman, so this was just my normal. If you ask anyone with a chronic pain disease, they will almost always tell you the same thing: “I wish I could go back in time and tell my younger self to push the doctors more.”

When you live almost every day in pain and you haven’t been diagnosed with anything, it’s a struggle. How do you tell your employer, “I’m in pain for no reason and have to call out multiple times a month, but please continue my employment with your company”?

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Christa lying on her couch.

This “in-between” stage of trying to figure out what is wrong with you is torture — all the tests and procedures and blood work. You feel like a scientific experiment. You know as soon as you find out what’s wrong with you that the relief of an actual answer will be like the entire world lifted off your shoulders. It’s not all in your head; you’re not over-exaggerating everything you’ve been feeling. But what happens after that moment of relief?

It’s been a little over a month since my confirmed diagnosis. My doctors had suspected endometriosis for almost three years by the time of my surgery, so I was prepared for that — but I wasn’t prepared for the PAD (pelvic adhesive disease, thanks to the inflammation of the endometrial adhesions), uterine fibroids and uterine polyps.

At my post-op surgery, hearing the doctors confirm everything and tell me they were able to remove everything was amazing! I was feeling great and was validated by the news. But as I’m driving home from work, my new theme song for life, “Fight Song” by Rachel Platten, comes on. I’ve listened to it so many times since my surgery; I really fell in love with it. But this time, I’m listening to the lyrics, and as the words “take back my life song” play, I just lose it. Warm tears roll down my face. That amazing feeling I’ve had since my surgery is long gone, only to be replaced with dread and fear.

I’m going to have this pain for the rest of my life. It’s not like the flu, where you go to your doctors and they give you medicine and voila, you’re healed! I go in for surgery to have everything removed, and in about six months’ time it’s just going to grow back until I can’t handle the pain anymore again. Then, repeat. I’m not going to miraculously heal. Surgery doesn’t mean that I’m cured. It means that I’ll have more good days than bad for a change until it comes back.

As a 24-year-old woman with an invisible chronic pain disease, this thought terrifies me. My amazing and patient husband has helped me out more than a husband should have to. The days that I’m stuck in bed, or the even luckier days when I barely make it to the couch, he brings me what I need without a single complaint. He takes on the housework, cooks meals and takes care of our dogs. I feel like such a burden in life. Like a failure. Not only has this disease taken away my life, but possibly my fertility. How is a woman supposed to care for her family when she can barely care for herself?

This disease is not only something I have to live with for the rest of my life, but something that my husband will have to handle as well. He’s become very aware of my non-verbal signs that I’m in pain, or very close to a flare, even when I say I’m fine. He’s gone above and beyond our vows of “in sickness and in health.” I’m going to warrior on with this life as I believe this is the life God chose for me. But as Rachel puts it, “I’ve still got a lot of fight left in me.”

Lead photo source: Thinkstock Images

The Mighty is asking the following: Give advice to someone who has just been diagnosed with your illness. What do you wish someone had told 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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