I don’t live with chronic pain, I live in SPITE of it

Two years ago, my life completely changed. I don’t know why, or how; I just know that one moment I was not in pain, and the next moment I was. A pain that has stayed with me ever since.

I know it’s cliche to say that you don’t understand someone until you have walked a mile in their shoes. Oftentimes I think it’s used as an excuse- and maybe I even thought it was when it came to people who claimed to live with chronic pain before that day came for me- but now I know that it is absolutely true. And I also know what it’s like to be a person with a pain that many people don’t take seriously.  Some don’t even think it exists.

A life with chronic pain is real, and it is HARD. Maybe we know why it happened, an injury, a fall, an accident- and maybe we don’t, either way- it doesn’t make the pain go away.
Maybe we look like “normal” people, maybe to you we don’t look like we are in pain- but that’s because after so long feeling this pain and letting it tear us down bit by bit, we had to pick ourselves up and push through it. For the first year I was in constant pain, I cried. Every day I cried. Every day I sobbed because I didn’t know what to do, or how to make it stop. Every day I wondered why this happened to me and wondered if it would ever end. I hoped and wished for the day I would wake up and feel like “me” again. It never happened. That was my defining moment. And it is my defining moment every day. Every minute- because I, because we, at some point have to make a decision within ourselves not to let the pain put the brakes on our life; not to let it OWN us.

We get treated like seekers by the medical community. Some think we’re making it up if they fail to find a cause, a reason, a result on a test- as if that is our fault. We get treated like fakers if we don’t sit around and cry about it. We deal with multitudes of well-meaning people giving all kinds of medical advice that for the most part, we can’t use. Most days we feel like we just can’t win.

I don’t want the drugs. I don’t want attention or special treatment or pity. I want to be just like everyone else- but more importantly, to FEEL like everyone else.

I don’t want to have to tell my children no when they ask me to play with them in ways I am unable to because it causes me too much pain. I don’t want to have to take breaks and sit down. I don’t want to have to get up and walk around. I don’t want to have to stretch, or go to doctors, or to get out of the house only to want to go home because I just can’t take it. No one should have to live this way, but we do- and most of us do so silently.
Many pains, illnesses, issues- all have causes, people standing behind them- shouting for acceptance and understanding- and rightfully so. Chronic pain sufferers don’t have any of that. Partly because we are so varied in what caused it, partly because people simply think we’re full of shit, and partly because we don’t need it. All we want is the understanding that our pain is real. Well, of course we want the pain to STOP- but most of us have accepted the possibility that it might never.

All we want, is when someone tells you they suffer from chronic pain- it’s not a booboo. It’s not an easy thing to live with. This isn’t a bump or a bruise, and we are not weak or whiny- this is a long-term, severe, and debilitating pain.
Just because someone might look like they aren’t suffering, does not mean they aren’t- and doesn’t mean you should question it.
I may live my life IN pain, but I do not live my life FOR pain; and we who live in it, don’t live WITH chronic pain, no. That would suggest we cohabit with this menace willingly; we live in SPITE of it, because it will not hold us down.

Posted on May 21, 2013 by Holdin' Holden 43 Comments
Holdin' Holden

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  • I feel like you wrote that about me.
    I did a spinal injury wakeboarding. And every doctor tells me that there is nothing there. no signs of any change or anything wrong.
    yet i cant get out of bed on my own some days, i cant undress my self some days.. yet the have the balls to tell me that there is ‘nothing there’

    And you are right. I dont want sympathy. I dont want to be consoled.. I want it recognised that im not a lonn… but mostly i just want the pain to go away!

  • I don’t personally have chronic pain issues, but my mother does. I know and understand how hard her day to day life is. People don’t understand and don’t want to. I’m sorry you have to go through that. And although you don’t want advice, one thing that has helped my mom immensely is actually an old home remedy. You take a quart size mason jar, fill it with golden raisins and cover them with sole gin, cover it and let it set for ten days, then take a teaspoon a day. She had been doing it for a while and she went from not being able to turn her head at all bc of the neck pain to a near full range of motion. Maybe give it a try. I hope you find some relief.

  • I couldn’t have said it better myself… I was actually asked by a Dr if I was a drug addict because she couldn’t find the “reason” for my pain… Because of that and how she treated me (like a drug addict, not a patient), I’ve had issues with that hospital… Thank heavens for my lady Dr.. She understands and helps me with my pain management.. Thank you for quitting this blog.. I hope it helps people understand more…

  • Have you been diagnosed with anything specific? A good friend of mine has something called CRPS (Chronic Regional Pain Syndrome). Its also called RSD (Reflexive Sympathetic Dystrophy) It’s a neurological chronic pain disorder for which, sadly, there is no cure. If the doctors can’t figure out the problem, maybe have them look into that. It struck her down in her early to mid 20’s. She has suffered horribly ever since. She has a handicap placard and all. She’s been cursed out by people when she parks in the handicapped spot (which she ONLY does on really bad pain days) because she “doesn’t look sick”. I’m waiting for the day someone says something to her when I’m there. I tried posting links but it won’t let me.

  • You describe in your precise wording exactly what it is to live like we do. All of us who have diagnosed or undiagnosed illnesses ARE looked at as crazy, hypochondriacs, seekers of pain meds, narcotics or simply that we seek attention. I am overweight, during the fall/winter, I am pale, yellowy greenish look like zombie dead warmed over with hideous black sinkholes underneath my eyes from year round allergies. THEN, I look ill. Summertime? When I look all pretty tanned & brown? People think I am the perfect picture of health. Why? Does a tan signal that I am all of a sudden am cured of my spinal injuries from a car wreck, and my arthritis that has eaten away one hip/knee til one leg is shorter than the other? Does it mean my Bi-Polar clinical depression, severe anxiety, sciatica, Dessicated degenerative spine disease is cured? I can go on & on. The fact is, people taking advantage when they are healthy, able and capable is DESPICABLE. I don’t take pain meds, I can’t tolerate them. I can’t get out of bed sometimes can’t take a shower can’t leave my house. I am learning now that I HAVE to get out & about or the pain WILL end me. I too, will live despite it, and not let it define my life not control every second of my waking thoughts. Thanks, Jenny.

  • Jenny, I meant Thanks TO YOU!

  • Thank you for this blog post! I have a spinal injury that was bad enough for the doctors to suggest surgery, which I turned down because that has its own issues, and they treated me like I was just in search of drugs….huh? What?
    I pluck on through my days, with some of the simplest things causing massive pain, but I tough it out, because thats how I roll. It does give me a better understanding of what people are going through when they are injured, yet it also makes me want to punch the little cry babies in the face. Suck it up and work through it, is the motto I want to live by…..In reality I follow the grin and bear it motto more!

  • Like others have said, it’s like reading my own story.
    Thank you for giving a strong voice to the reality of our lives and the boundaries placed upon us that we are constantly pushing against.

  • This is me too! I have degenerative arthritis, COPD, Fibro and live with pain every day. I wish there was a way to get this across to all the people with whom I used to be able to do things with regularly. The arthritis has already claimed both knees, and I was hoping that the new ones would make it easier for me to be able to walk…boy was I wrong. Now my ankles and hips give me fits every day. I already know that new hips are in the future, as well as reconstruction on at least one hand, but there is nothing they can do for my ankles at this point. I get tired of the people who just don’t get it…

  • Thank you for this post. I spent all day crying bc of my pain wondering how I was going to even make it through the day. Not because I feel sorry for myself but because I am so frustrated with this already. I have three kids (one who is 7 months old) who depend on me. I feel trapped inside a body that betrays me every day. Btw, I read recently that medical researchers are trying to reclassify fm as a neurological disorder. This will only further promote the stigma that its all in our heads. :'(

  • Yes, yes, YES! Constant pain, constant fatigue. Bone-deep fatigue. Unable to do even the simplest of tasks because it hurt. I suffered for years. My doctor thought arthritis or fibromyalgia, but he wasn’t that concerned. Finally I figured out why. I’m celiac. I started a gluten-free diet, and within three days I felt human again. I did the blood test to be sure, and it came back positive for celiac. The gluten-free diet is lifelong, and if I accidentally ingest something I shouldn’t, it hurts. Legs, arms, torso, head.

  • I totally get what you are saying and I am glad that you can put into words how so many of us feel. Back in 2000 I was in an auto accident that had me in a hospital for the better part of a year. From this I eventually walked away from it with screws and pins in my knees and wrists, as well as 6 fractured vertebrae in my lower back. Which was in the same area as a prior injury 5 years earlier of 4 herniated discs. I live day to day with my spine feeling like it is on fire. On the bad days I feel that if they would open my back up they would see my spine blazing out of control like a wildfire in the forest.

    There are days that it gets so bad that I think if I only had a gun it all could end, but I cannot do it and I would not do it because I have a beautiful wife, inlaws, and fur babies that understand as best they can what it is that I live through, and I refuse to let it win. They see what the public cannot, and they live through it with me. I have a great doctor who means well, but just does not get it. Every visit he sees in my eyes the pain I am in, but he will always say “If you could just lose 250 lbs they could do surgery that might put an end to it”.

    I have been trying to do this since 1993, and I lose a little, but then I have a bad week or more and it comes right back. Of course inside I am saying well I could lose the weight if I did not have the pain, and I could lose it if I were not bed ridden 3 days for every day I try to exercise. When I was younger I always heard the phrase walk a mile in my shoes, and I thought it was just a bullshit way of trying to get sympathy. After living for 7 years with daily pain, and 13 years with severe chronic pain I realize it is not bullshit, and it is not a form of trying to get pity.

  • Thank you for speaking your truth. People shouldn’t have to be ashamed to say, “yes I have chronic pain but it doesn’t define me.” You have also told “my” story. I have spent years (decades) and thousands of dollars trying to hold off on taking prescription pain meds. It’s been quite a journey and I have learned so much and have shared my story with many. I have met the most fascinating people along the way. Your sense of humour (cdn spelling) is one of the best healing mechanisms. May you always have the courage to follow your truth.

  • Wow, thank you. I really wish there more understanding people in this world that did understand chronic pain. I was recently diagnosed with anxiety and deal with nerve issues in my arms. I had carpal tunnel surgery a little over two yrs ago in one hand and guess what?! I have it again only in both and pain in the ulnar nerve. Being a stay at home of 3 kids, one of them with special needs is not easy when you need full use of both hands. The anxiety is a every day problem as some of you may know too that suffer from it. I did get on meds a few months ago and it’s better, but still there. I hate it and don’t feel like the lively person I want to be on the inside most days. I don’t want sympathy and hate asking for help. When I do, I feel like I’m a burden or resented because on the outside I look fine. (Hugs) and prayers to you all!

    • I have carpal tunnel in both arms as well as tennis elbow and neuropathy all over. I could not lift my newborn grandson when he was born until he was about 6 mths due to this, so I know your pain! I also have major muscle spasms all over now. I don’t want anyone to feel sorry for me, I just want my family to understand when I cannot give them a definite when they want to get together at a specified time. My sister recently said she wanted to know what she had to do to get SSD so she wouldn’t have to work again because she is tired and in pain from her back! I give up explaining to anyone. My daughter has MS and Lupus and they understand her problems because she has a diagnosis, but I have been told “maybe I have this or that” and it’s not definite, so they think I don’t have anything but laziness. My daughter has even tried to tell them MS and Lupus are genetic and did they even consider that just maybe she had to have gotten it from me? God Bless you hon.

  • So true. My favorite part -“I don’t want the drugs. I don’t want attention or special treatment or pity. I want to be just like everyone else- but more importantly, to FEEL like everyone else.” I’ve always thought that since living with chronic pain.

  • Thank you for your post. People always look at me and say…”You don’t look sick”. It drives me crazy. When I walk with canes because my legs hurt so bad that I have very little balance people are like “what happened to you I just saw you yesterday…”. It’s frustrating and tiring having to explain I have RA to which they reply…”oh, I have arthritis too”. Really it’s not a competition. Your post reflected every thought I’ve had about my chronic pain. Thanks again!

  • Wow! I’ve been reading your blog for several months now, and of course reading your wicked-funny Facebook posts… and I had NO idea you were suffering like this! I have so much respect for you for being able to maintain hilarity without letting your pain take center stage. I mean, you totally could’ve made the whole blog about chronic pain… and I’m sure people would still read it! I don’t know you personally, but I can only assume that you are one bad-ass chick. Keep rockin, mama.

  • I also felt like you were writing about me.

    I suffer from a pain syndrome, it’s what my doctor and I call it… but, it’s actually just the ramifications of an old abusive relationship… No cure… It will only get worse… 28 years old on the outside, with the inside of an 80 year old feeble woman.

    People never seem to accept that I keep an ice pack and a heating pad at the office.
    That sometimes, I can barely stand straight, or walk without wincing… etc. etc.

    I get the “you’re too young to be….” or “you’re too young to have…”

    It makes me angry, and sad.



    Sorry to vent. This one hit home.

  • Thank you. Thank you thank you!!! I have Lupus.. Fibro.. who knows what else shortly after diagnosis I lost all hopes of Insurance. People look at me.. they can not tell How hoprrible I feel. How I ache and scream on the inside how shooting pain and nerves on fire hurts. I feel like I was in an accident and have the worst FLU ever all at the same time. How I am so exhausted by noon .. how I have to hold back tears and tell my kids I am sorry mommy doesnt feel well enough to play or take you places. You need to find the story called Spoon Theory. It is awesome.

    • Wow, you sound soooo much like me. My oldest and middle son are starting to understand but it tears me apart to see such disappointment in their eyes. This has been an exceptionally tough week for me in terms of the flare ups. Thank you for reminding me about the spoon theory. It helped me to explain how I was feeling to my parents and husband years ago. I’m going to reread it myself now. I’ve been feeling so alone dealing with fm and ra but reading these comments have made me feel like at least I’m not in it alone and no, it’s not all in my head. Sending you and everyone else here dealing with chronic pain, soft hugs and praying for pain free days. <3

  • Thank you!! Posting this is like a soothing balm for all of us who suffer from chronic pain–because most of us have tried everything, and yet have no respite from the pain. When you go to the doctor, they only want to do a blood test and if it shows nothing, bye-bye. They want to give you a prescription, but usually for something that does not help with pain as strong as what I have. I had a doctor for years who did understand, was very compassionate, and who gave me more answers than I would ever get anywhere else–but I moved to another state, and nothing has been the same since then. While under her care, I could actually work and live a somewhat normal life. But the doctors here have a very strange attitude and will not prescribe the drugs I took for many years. Let me point out that then (and still) I would take the pain meds for 3-4 days and then none for 2 days-just to make sure I wasn’t addicted. It wasn’t easy but I did it, for my own peace of mind. Most the doctors I have encountered here do not really ‘get’ chronic pain, and it’s effects on your life–they seem to think everyone is just a junky trying to get drugs. The pain meds I took under the care of my wonderful doctor had practically no side effects and didn’t make you feel like you have brain fog–you could actually do your job and maintain a fairly normal life. Why won’t doctors write for this drug? Because they listen to drug reps who are only in it for the money and have no problems informing physicians of totally erroneous claims which make this NEW drug work better than the older, cheaper, not under patent/copyright protection old drug. That’s the whole problem right there! I went to see my new orthopedic doctor and while waiting in his office, a drug rep came in and wanted to book a chance to ‘see’ the doctor by bribing them with lunch for the whole office–the first open day she could come up with was nearly four months away!! Every other day in this office was already booked for lunch, and believe me, they do not bring in Popeyes chicken! And a friend married to a doctor is always telling me about the new Ipods, tablets, phones, etc. that the drug reps send them. Does this seem to be the way business is done nowadays? Uh huh. Thank you so for pointing out that sometimes people have awful diseases that are invisible to the naked eye–not everything shows, although at this point I feel bad because people are constantly asking me if I’m OK when I am out! I guess it shows now huh?!? Much thanks!

    • I wish you would’ve named the medication. I’ve been on so many for so many years and looking for alternatives is something I am always interested in. I’m on Fentanyl now. It’s a drug that end stage cancer patients get. It means that I’ve reached the limit that Opiates can do and now we (the pain specialist & I) are at the stage of accepting that I will always be addicted to these drugs. They aren’t the answer b/c to get to a dose that would work would mean my head would be totally gone into a never ending fog. Btw, part of the reason doctors don’t want to prescribe anymore is because they are held against the firing wall by government oversight agencies and they are afraid.

  • Well said ~ living in spite of the pain. You got this ~ and I got this ~ as long as we keep on keeping on, we are stronger for it. Chronic pain sounds so simple and small, few realize how consuming it really is, yet we plow through it every minute of every day. Love your words and more-so, love your way of thinking and you ability to convey it. Thanks for being you!

  • Thank you, Jenny. This is also a life I deal with daily. I live with (and in spite of 🙂 ) degenerative disc disease, sciatica, chronic trochanteric hip bursitis, bulging disks, and also permanent nerve damage. I often feel the way you stated in your blog. I have 4 kids….and I’m a single momma. Although I feel like I’m not able to physically be the best mom I could be, I am eternally grateful that my children are both understanding and supportive of me. They know when I have my bad and worse days (I cannot say “good or bad days”….there’s no more good days.) When they sense that my pain is extremely bad or worse than normal (damn that humidity!), they are as happy to sit with me on the sofa and watch movies or play Wii/Xbox games, board games etc that they would be going to the park or something. It’s not always about taking your kids to extravagant places or always being on the go….it’s simply about spending QUALITY time with them, no matter what the family does together. Hell, sometimes we all just sit here and have “your mom” joke contests, just to see who can make up the best one! (Hey…I never said we were a NORMAL family hahaha!) But regardless, we ARE a family and this IS my life and those who criticize or judge me and my way of raising my beautiful babies can kiss my big “broken” butt! ;-P

  • Honey, I KNOW your pain. I have been in 3 head on collisions (NONE my fault!), fallen out my front door down 4 feet onto my head, neck and shoulders (ex hubby’s fault for not putting the steps back after mowing the grass and it was dark; night) falling down my staircase, having one ruptured disc, 1 bone spur in my neck, 3 fractures in my vertebrae in my back from the fall down the stairs, 1 broken tailbone from same, living with an abusive alcoholic and having my head beat into the floor for 7 years, PTSD, fibromyalgia, chronic fatigue syndrome, shuermann’s syndrome (which causes hump back and also called juvenile disc disease) and mixed connective tissue disease. My 23 year old daughter was diagnosed with MS and Lupus (at the ages 21 and 23) and there is a huge possibility I also have one or both, but never dxd. I have lived with pain since I was 16 years old and I turned 47 today. I do not take any pain meds, even OTC’s. I drink beer or wine or occasionally rum to smother the pain especially when I am cleaning around the house just to be able to function. I don’t want to take the prescription meds until I cannot take it anymore because I have a high tolerance for all meds and alcohol (I was told by a Dr. this has to do with being a redhead….go figure). I have been offered Neurontin/Gabapentin for pain and still struggling to stay off the drugs. I wish the best for you, because I know you are still very young to be dealing with this pain.

  • i dont mention mine anymore – i got sick of the reactions. i just suck it up and get on with it best i can because youre right – no one believes you. i look fine, i have two young children and i look after them full time, do the shopping clean the house pay the bills run all the mummy errands…. i manage. then i have a bad week, i get sick i get slow i get so tired i cant sleep and i cant wake up and it just aches all the time like my own private hell…. and still i look fine. you know what the people around me are bothered by? my house isnt spotless. they dont think im actually hurting or really sick because im ‘always sick’ not said in a tone of sympathy or understanding but rather doubt and disgust as though im either full of shit or weak and in the end i figured i could put up with the pain and the illnesses better than i could put up with the doubt and having people tell my kids im not actually sick im just lazy. no, i dont live with my pain – i ignore it. the fantastically healthy people around me have left me feeling like i dont have any other choice.

  • I love this! I have never been able to put what I felt into words but this is exactly how I feel!
    As I lay here in bed on my heating pad from over doing it today but stuff needed to be done. I’m only 25 years old and have been diagnosed with myofascial pain syndrome for approximately 6 years now. I’ve managed to stay almost as active as everyone else my age by living in spite of my pain. Most of my friends don’t even know I have a problem because pain is my normal. After a while you get used to it. Love this blog!!

  • My dad has had chronic pain for pretty much my entire life. He has had 3 or 4 back surgeries, surgery on this thumb, arthritis through most of his body, and always gets migraines. He is in constant pain even though you can’t always tell. I feel so bad for him and do what I can to help him out. It breaks my heart. With him being my dad I can tell by how he moves how bad the pain is. It’s heartbreaking.

  • I have shoulder pain from bursitis, and lumbar pain from early arthritis. IF I eat grains. If you have pain that is caused by inflammation, please at least try going grain and sugar free.
    I went Paleo last year, I hear again and again that it is successful in eliminating pain for people. My 18 year old who developed Achilles tendinitis growing up, is finally totally free of the pain after a few weeks of paleo living.

  • Amen! Even my own husband thinks I’m faking sometimes. 🙁 I know the cause of mine, but there is no way to fix it. Maybe surgery someday when I’m “older.” It sucks to be in my 20’s and hurt all the time. Thank you for putting words to a feeling that no one, other than those who experience it first hand, understands!

  • I understand 100%. I’ve dealt with chronic pain since I was 16, which makes it 7 years since I was diagnosed with fibromyalgia.

  • I get migraines, several a month. But the days I’m lucky enough not to have a migraine I still have headaches. Every day I hurt. There are so many things I can’t do or don’t do for fear of triggering a bad one. A bad one usually ends with me in the ER hooked to an IV while the doctor acts like I’m just looking for drugs. Yes thats why I let myself get so sick and dehydrated so I could get a shot. How about I took the max dosage of all my medications prescribed by the neurologist and now its to the point that I can’t keep anything down and I’m in so much pain that I have considered what it would take to physically knock myself out. So I understand just wanting to wake up not hurting but unless you experience it and live it I don’t think anyone else can understand.

  • I’m another in the choir, 12 bulging discs with all the accompanying nerve damage and arthritis. The major pain was brought on by a epidural steroid shot in my spine. Ends up, I’m ‘sensitive’ to those drugs, and they highlighted the discs rather than easing them. That was like 8 years ago, and I’ve been in pain since then.
    Hell yeah, girl! You spoke my words, thank you.

  • You may never have met me, but boy do you know me!

  • It’s nice to see that most of you push through even though you are in pain. I hear that eventually you may trick your brain into thinking it’s okay. My mother does not push through. She lays down most of the day. Does not believe in relaxation techniques, will not go out to lunch when a friend asks, even though the last time she did go, it was okay. She’s looking for the magic “pill” and when we tell her to try, she gets angry and says we don’t know what she’s feeling. It also seems that her pain is always worse… tomorrow will most likely be worse than today. If I mention you to her, she will say you can’t possibly have the pain she has.

  • I’ve read your blog forever, and followed your Facebook page, without somehow ever seeing this post until you reshared it tonight! All I can say is YES! And Thank You, for speaking for all of us who “look normal” on the outside and suffer on the inside. It took me 28 different doctors and 3 years before I found a doctor who believed me when I said I thought my insides were being torn apart, and come to find out, they indeed were, and are, and forever will be, due to the Abdominal Adhesive Disease that I suffer from. All I can tell you is don’t let those doctors discourage you, tell you they can’t find a reason, that you’re looking for drugs or crazy, you push back and tell them to do their damn job! They look for what’s easy to find, because it’s easy. They don’t want to deal with a complicated case, it’s too time consuming for them, especially the very over booked doctors these days. Thanks again for speaking up for those who suffer in silence, whether by choice or not! Pain makes you stronger because you have to be! You get to a point where there’s no other choice but to be strong! Don’t ever give up on answers!

  • I have been diagnosed with chronic daily migraine. This means that there is not a day that I do not experience one level of migraine or another. Some days are better than others, but the pain never goes away, and the fatigue and utter exhaustion of just getting thru the day is enough to make me want to just lie down and never get back up again. But. Of course I do, I have a wonderful husband and two beautiful daughters that I have to live for. I just wish I didn’t miss out on so much of their lives. I think the worst thing was when. My – then 5 year old, said “Mommy can’t do it, because she always has a headache ” broke my heart…but some days it’s just too hard.. I feel your pain, I feel like this could have been written about me. Thank you for the recognition that what we suffer is REAL!

  • EXACTLY! I couldn’t have expressed it better. My knees are somehow not functional since a year ago and I have constant pain while siting, walking and of course standing. And sometimes also while lying. I quitted my job, and had to move back to my parents to another country, away from my boyfriend and friends.

    Some days I even question why to live if living implies an all-day pain and I can’t dance, walk or even have a cup of tee with a friend. I am trying with a Mindfulness course and a psychologist, and trying to be optimistic, but sometimes I just don’t have the motivation anymore.

    Anyway, hearing from people that have chronic pain and are living with it makes me feel full of hope. I wanna be like you!!