My Story: How Do You Explain Chronic Pain to Someone Who Doesn’t Have It?

My Story: How Do You Explain Chronic Pain to Someone Who Doesn’t Have It?

Angela Byczkowski

Angelika Byczkowski

Editor’s Note: Angelika is a former IT specialist who worked in the Silicon Valley who is disabled from chronic pain and fatigue from Ehlers-Danlos Syndrome and Fibromyalgia. She lives with her husband and various four-legged children in the Santa Cruz Mountains.

I was talking with the editor of the National Pain Report about the difficulties pain patients are having in getting access to opioids when I realized that a big part of the problem is that people without chronic pain don’t understand how devastating it is to live with.

He suggested, “Great, write about that!”

I’ve found that people who don’t have experience with it seem almost incapable of understanding chronic pain.

It is understandable.

Chronic pain is a permanent discomfort that some of us have to endure for no reason, and completely undeserved. We live it, but we don’t even understand it ourselves, so how can we expect anybody else to?

How can we expect doctors and other well-intentioned people to allow us access to drugs they believe are dangerously addictive if they can’t understand the unrelenting torment of chronic pain? Why should they prescribe us powerful opioid medications when they don’t understand how critical their effective relief is for us to enjoy even the most basic quality of life?

Many of us, myself included, have not been able to explain our chronic pain to our loved ones and dear friends, not to mention our doctors or coworkers.

Everyone suffers some pain in their lives from injuries of various severity – it’s an inevitable hazard of living – and this is usually a person’s only reference point for the experience of pain: it is caused by an injury, it hurts for some time, and the pain fades as the injury heals.

Not so with chronic pain.

It’s unnatural to have pain without an injury, it’s unnatural not to heal and get better, but this is exactly what chronic pain is and does. Its persistent, pervasive, and permanent nature is almost incomprehensible, even to those of us who live with it.

We are expected to “get better”, and people seem to lose patience with us when we don’t. Often we can’t even explain why it hurts, just that it does, and this lack of a clear reason seem to invalidate our experience in others’ eyes.

We live in a visual, evidence-based culture. The same doctor that is willing to prescribe us loads of pain medication for a broken bone or after surgery becomes unsympathetic when our pain isn’t visible.

If there’s no evidence of some bodily damage or injury, people seem more willing to believe we’re making it up or imagining it. They become suspicious of our motives. To them, our incapacity seems like a built-in excuse to get our way, and this provokes resentment.

To overcome these obstacles, we must find a way to explain our suffering in a way others can understand.

What is it about the particular torment of chronic pain that makes it so much worse than acute pain? What is the difference between the pain from an injury and pain from central sensitization? I’ve struggled for decades to explain these and other aspects of my pain.

How do YOU explain your chronic pain to your loved ones, health care providers, your employers and coworkers or other people you meet?

Let’s start a conversation!

We’ll publish some of the comments in the days and weeks to come.

Angelika blogs on chronic pain and illness at EDSinfo.wordpress.com.

 

 

 

Authored by: Angelika Byczkowski

There are 32 comments for this article
  1. Brenda at 1:13 pm

    I was searching how to eloquently explain my idiopathic peripheral neuropathy and chronic pain with my loved ones and stumbled here. It is impossible to put into words as there are no standard answers. One area that I am frustrated with is the pain levels which are so subjective,almost useless. Do you find as time goes by what you would call a 10 is now a typical day – one that you can almost tolerate? So when I go to the pain clinic and say I am at an 8 which now is pretty horrible pain since I had infected pancreatitis I know that was a solid 10- that is my guide. So as I am told I’m getting better I was denied long term disability ! I know this is going off subject but my point is … How do we get our loved ones, doctors, insurance companies etc… Understand what we truly endure!

    Walk a day in my shoes, PLEASE!

  2. cindy at 3:55 pm

    Hi Stacey,
    Have you had a VEP test done? or any testing for MS? Your symptoms sound just like mine. I was diagnosed with Fibro back in the early 90’s. Talk about shame and pain…I went to a very well known Rhumatologist who diagnosed me. Although now I am pretty sure it has been MS this whole time. I have had testing for MS before but never a VEP study. I am now waiting for a MRI of the cervical area, I guess it isn’t so much the brain, but that area of the spine. Anyway I get Dystonia now. The cramping sounds like what you have…so sorry. It sucks to have chronic pain!! BTW..I failed my VEP test. Meaning it is a good sign for ms..not any of these things are good but at least I hope to be looked at differently than someone who isn’t seeking drugs, someone who has alot of pain..peace.

  3. Stacey at 3:28 am

    I have suffered with chronic pain and fatigue for a number of years, when it was first happening, I could explain frequent pain that got better if I stretched and rested enough. I could still work and do most everything. After a diagnostic surgery in 2010, I developed horrible pain, vicodin and other prescriptions did nothing. I was finally diagnosed with fibromyalgia. I can explain the parasthesis, it’s like pins and needles not like your foot fell asleep, but like you are being injected 10,000 times per second. The back pain from a ruptured disk, arthritis and degenerative disk disease, it’s constant back pain, it gets better with rest and worse with movement. The nerve damage where they cut adhesions from my abdomen, I can’t describe. Doctors can see it because of the pain caused by gently running their finger over the area where it looks fine, others don’t understand, why can’t you bend over to cut your own toenails?? I just blame the ruptured disk, people seem to get that. How do I explain the spasms, twitches and jumps, it is like a lightning bolt hit my spine and goes through my body. I can’t explain why my eyes roll back in my head and I look like I am having a seizure or why my hand deforms itself and folds in half to look like a hook, but when people see it, they understand something is wrong (although doctors are clueless). Why do you pass out mid sentence? It’s all the medication isn’t it? I don’t know, let’s ad another pill to stop the symptom. You have the medicine and pass out less, why did you still pass out? PAIN, my body just shuts my brain off to stop the PAIN. Hmmm, really all that medicine and you still have pain? Yes I have Fibromyalgia. Isn’t that just the diagnosis they give when there’s nothing really wrong with you? I do not use narcotics because they do not help the pain, so I’m not seeking “drugs”. I had to cut my hair that I used to do every day, because I spasm to the point my hair I loved is matted beyond brushing. I can’t put make up on my face, I love make up and used to wear it even if I was just home cleaning the house. I enjoyed every part of my life that I no longer live, I just watch life. I never sat around the house, now that’s about all I do. I can’t shop, cook, clean, go out, use a knife, groom myself etc…because I like being a fat blob that can barely make it through a day. So yes that is what Fibromyalgia is, it’s a made up thing, so I don’t have to live anymore. The studies showing blood in certain areas of the brain, the blood test they now have, obviously not real, that is why they along with most helpful treatments are not covered by insurance, and with my vast $600 per month, I will just go have my own tests and treatments done. Because if this is not real, and I am living like this, I really need some psychiatric help. Gee I barely touched you, how do you cry so instantly? It’s called PAIN..The nerve signals in my brain are messed up and they think you just stabbed me with a dull knife that went through to bone. Well can’t you get more medicine? Yes, but I would like to at least watch life, if I take anything else, I’m going to be in bed 24 hours per day. It doesn’t end there, I do use the spoon theory to explain my fatigue, but pain that doesn’t feel like any other pain I’ve ever experienced, I can just say it hurts, imagine a hit, then another hit in the same spot, then another, and continue forever. Like water torture, one drop of water on your forehead, no biggie, continue it, over and over and over and over, it’s a problem.

  4. Katie Dalton at 1:59 pm

    I’ve suffered from a 24/7 debilitating headache for the past 3.5 years following a mountain bike accident. My chronic headache forced me to leave my job as a health coach 2 years ago. I’ve sought treatment full-time for several years now – having seen well over 100 different practitioners all over the country. I’m 27 yeasr old and otherwise very healthy, so I understand that it’s hard for other people to appreciate what I go through because nothing about my life from the outside screams suffering. I started a blog 2 years ago (www.butmaybetomorrowkd.blogspot.com) as a way to keep the people in my life up to date and informed with my treatment, but have learned in the process that sharing my story has been the healthiest way for me to “explain my pain”. It’s a window into my life, which makes it so much more than a list of symptoms I have or a diagnosis I’ve been given or a treatment I’ve pursued. And even if no one else read it, it would still be worth writing. Forcing myself to step back and organize my thoughts around what I’m going through is therapeutic in and of itself. It provides sanity and perspective. But people do actually read it, and aside from the benefit of feeling more understood by friends and family, it’s connected me to other people from around the world going through similar situations. We’ve shared experiences, frustrations, referrals, and insights that could never be found elsewhere. So what I’m trying to say is that feeling misunderstood (an all too familiar feeling for anyone dealing with chronic pain) is isolating and feeling isolated is a slippery slope. By sharing your story (whether through a blog, support group, or some other means), you gain as much as you give. It’s true – nobody will ever know exactly how you feel, even those that love you most, but the more connected you’re connected to others, the less alone you’ll feel.

    Katie
    http://www.butmaybetomorrowkd.blogspot.com

  5. Katie Dalton at 1:57 pm

    I’ve suffered from a 24/7 debilitating headache for the past 3.5 years following a mountain bike accident. My chronic headache forced me to leave my job as a health coach 2 years ago. I’ve sought treatment full-time for several years now – having seen well over 100 different practitioners all over the country. I’m a 27 year old and otherwise very healthy, so I understand that it’s hard for other people to appreciate what I go through because nothing about my life from the outside screams suffering. I started a blog 2 years ago (www.butmaybetomorrowkd.blogspot.com) as a way to keep the people in my life up to date and informed with my treatment, but have learned in the process that sharing my story has been the healthiest way for me to “explain my pain”. It’s a window into my life, which makes it so much more than a list of symptoms I have or a diagnosis I’ve been given or a treatment I’ve pursued. And even if no one else read it, it would still be worth writing. Forcing myself to step back and organize my thoughts around what I’m going through is therapeutic in and of itself. It provides sanity and perspective. But people do actually read it, and aside from the benefit of feeling more understood by friends and family, it’s connected me to other people from around the world going through similar situations. We’ve shared experiences, frustrations, referrals, and insights that could never be found elsewhere. So what I’m trying to say is that feeling misunderstood (an all too familiar feeling for anyone dealing with chronic pain) is isolating and feeling isolated is a slippery slope. By sharing your story (whether through a blog, support group, or some other means), you gain as much as you give. It’s true – nobody will ever know exactly how you feel, even those that love you most, but the more connected you’re connected to others, the less alone you’ll alone.

    Katie
    http://www.butmaybetomorrowkd.blogspot.com

  6. Kim Miller at 10:53 am

    Along with Fibromyalgia, I suffer from several of the manifestations of this condition. Besides Interstitial Cystitis, Peripheral Neuropathy, Chronic Costochondritis, Restless Legs Syndrome, Migraines, and Attention Deficit Hyperactivity Disorder, I also have the problem I call “the one that makes me want to jump off of a very tall building”. This problem is somewhat like RLS, but feels like I am being electrocuted all day, every day. I hate to get up in the morning because that ” wakes it up”. Not the way RLS behaves.

    This is how I describe the problem I have the worst time dealing with.

  7. David at 3:30 am

    I suffer from chronic lower back pain, it has spread to my legs and can reach my upper back on a really bad day. The worst thing is that, without any broken bones or blood, people can’t see how it can have such a debilitating effect on my life.

    One of the ways that I can describe the pain in my lower back is that a huge stone fist is gripping my spine and crushing it. The pain in my legs is as though I have cramp all through them.

    The pain is bad but the treatment can be worse. I take enough tablets to sedate a small army, the most potent being 120-160mg of Oxys a day. This can help with reducing the pain but leaves me completely incapacitated when it comes to work. I can’t drive and have the choice of being in pain but clearheaded or I can do something to reduce the pain but take the risk of falling asleep in meetings.

    I live in the UK and feel that the National Health Service is woefully unequipped to diagnose and deal with those who suffer from chronic pain. I can go months between meetings with my assigned pain management specialist which has led to me going private with my healthcare, at a cost of thousands of pounds and still counting.

    Unless you suffer or have suffered from chronic pain then there is no real way of understanding it.

  8. Sidney at 8:36 pm

    I explain it by likening it to common issues that everyone has had. My fibromyalgia is like how you feel the next after you worked out your legs and arms way more than you should have, all the time. My arthritis is like dipping your fists into icewater for a minute, all the time. My stomach pain is similar to heartburn, but it engulfs my whole torso and is twice as painful and burning, all the time. My fatigue is like when you had mono and didn’t know it, all the time. But, my pain is not me. I don’t let it, or anything else, control my life or steal my happiness.

  9. Reinard at 7:34 pm

    My neurologist once put it very well. Our bodies are very good at adapting to temporary pain, even sever pain (think childbirth, people moving heavy obstacles after an injury, some cut of his own arm, etc.). But our body just doesn’t deal with even small amounts of constant persistent pain. Think of a minor paper cut that just won’t quit bugging. Or a poison oak infection that just itches and itches no matter what you do. It’s kind of like that, except there’s no end to it. Have you ever heard of Chinese water torture? They just tie you up and put a drip over your forehead that just drips a drop of water every few seconds. Most people will go crazy in a matter of hours. Chronic pain is somewhat like that. Even if we manage to adapt to the pain, it’s a constant nagging, limiting condition. It makes one uncomfortable and moody, event agressive sometimes. It’s tough. Really tough.

  10. M. Morgan at 12:26 pm

    Pain is an evil, insidious thing. It destroys everything good in life. ( 20 years with chronic pain )

  11. Courtney at 11:58 am

    I have chronic migraines and although the pain is not always constant, the fear certainly is.
    I think the best way to relay that to an otherwise healthy person is to find some way to relate pain.
    For example, maybe the person broke their arm and remebers that horrible pain.
    The way I would try to explain my illness would be to ask the person to try and imagine a life where at anytime, and many times without warning, something will break your arm again. There will not be a physically traumatic event though – maybe the cold wind does it, maybe the sun hit it just right or the bus stop smells just a bit too strongly of diesel today.
    Imagine this happening over 15 times a month (maybe less some months, if you’re lucky).
    Sounds bad right? You might even be scared to go about your day normally.
    Now, what if your arm didn’t look any different but you could feel that it is in fact broken? Eventually people around you will begin question your pain and doctors become suspicious that you just want narcotics, when all you want is for it to just stop happening.
    That has been my life for 19 years now, and so far no one can really explain to me why it is happening or how to stop it.

  12. Wendy Buchmann at 9:17 pm

    I describe my pain as being like the worst influenza you’ve ever had, coupled with several direct hits with a baseball bat every single day of your life.

  13. sandy sullivan at 5:55 am

    I have had chronic pain for 7 years. I have had surgery on my sacrum for a tarlov cyst and am much better but still have some permanent nerve injury that gives me chronic pain. I always feel like I have to explain myself to my PCP and always worry he will not give me my very low dose of hydrocodone. 1/2 pill a day……he really has been good about it so far but the fear and apprehension remains. I a very good friend that thinks I should just “get over it”and that is so hurtful too. I am blessed with a wonderful husband who is very supportive. Yes, I am curious as to how others deal with this issue.

  14. Elizabeth at 8:55 pm

    I’ve stopped trying to explain my pain to others and speak about it as little as possible because I find it an exercise in frustration. At first I thought that if I could just explain the pain clearly to my Doctor (not easy), he would recognize what it was and come up with a solution. After seeing quite a few specialists I realized that wasn’t going to happen any time soon, if ever. It was finally, by process of elimination, decided that it was stomach wall pain, or myofascial pain and I’m still trying to find a treatment that helps. I took a chronic pain workshop with the U Vic self management programme and that helped me cope with the pain. The pain is constant and the worst part, I find, is the fatigue. Fortunately my husband is understanding, so I can talk to him about it, but I try not to do it too often, because I don’t want it to disrupt his life more than necessary. I think it is very true though, that since the pain is invisible it is hard for others to understand unless they have experienced an on- going health problem themselves. Fortunately I’m of retirement age so I can take things easy and not be expected to do too much, young people who have a family and/or need to work with chronic pain, have my sympathy.

  15. Keo Gathman at 5:29 pm

    One of the ways I’ve explained what fibromyalgia feels like is this…..”You know how you feel the first day of flu, when you ache all over and feel like you haven’t slept for 24 hours? That’s my life on my best day.”

  16. Matthew Mackay at 1:06 pm

    I can’t believe it… I have EDS too and chronic pain and I lived in the Santa Cruz mountains between 2007 and 2011 … were we two zebras living a mile from each other and not knowing it?

  17. Christine Millier at 8:11 pm

    The way I have described the pain and exhaustion of Fibromyalgia is first to ask if they have ever had real influenza virus. Most people have experienced that. To me it is like this all the time and this is on the good days, when I am in remission. I have this continual body aches and painful joints and muscles! When I have flare ups, or relapses, it is worse, I am so exhausted it takes all energy to just go to the bathroom o have a shower I sit in a chair because I don’t have the energy to stand. I have no strength to prepare meals, or even get dressed. In summer I just about live in sarongs because clothing hurts I My eyelids ache everywhere hurts. Surprisingly for m, I do feel much better in winter. I live in hot coastal tropics of Australia so winter is just beautiful.

  18. Samantha at 9:42 am

    So very true Angela! I face this issue every single day of my life. I try to explain how I feel to family, coworker, and doctors (Ugghh!) and it gets me nothing but blank stares or, my favorite, “awwwww!!” I feel like all I do is complain and whine about everything every waking moment of my life. I always have something hurting me. Always. And I never “get better!” like everyone tells me to do.. (I can just imagine how weak and whiney everyone thinks I am!) So I tend to push people away, as to not bring them down. I whine so much every day, that I feel sometimes it’s best to not say anything at all. Because I know no one will understand in the least bit, and because I’m so sick of trying to explain something I don’t even understand! And the blank stares or puzzled expressions on their faces are unbearable and heart wrenching. I know that I’m not getting through to anyone and that makes me feel even worse than if I pretend to be a “normal” functioning human.. So you’re completely right, it’s extremely indescribable. 😞

  19. Jessica L. Jorgensen at 8:02 pm

    Over the past sixteen years, my idiopathic chronic pancreatitis has reigned with terror in my upper abdomen. In the process of treating it, the many surgeries I’ve had have left behind a mine field of scar tissue, which has led to the formation of adhesions. So on top of the pancreatitis, I also have what’s considered pelvic adhesive disease. It’s just one big party!

    I’ve been a “frequent flyer” in the ER, only because the intensity of the pain was through the roof, and my body was being ravaged by it. Of course, you see at least three doctors before they order anything, each of them requiring you to tell them the same story. It’s a maddening scenario. While I’m always met with doubt, I try to stay calm. They ask, “Can you describe the pain for me, Jessica?”
    I say, “It feels like my upper left quadrant of my abdomen is on fire.”
    “So you’re feeling heartburn?” the doctor inquires.
    “No, that would be tolerable. This is not that kind of burning. Imagine that someone is holding a Bic lighter to your nerves. That’s what it feels like. And when waves of even worse pain come, it feels like an elephant in stilettos is standing on the area just under my left ribcage.”
    At this point, there’s either a dawn of understanding on the doctor’s face, or more of the neutrality-edged-in-doubt expression I often see. In general, it’s hard to tell others what it feels like to live in what sometimes feels like a torture chamber. I don’t like seeing my divinely-gifted vessel in this way, but sometimes it fits.

    Perhaps one of the most irritating statements I hear all the time as a woman at 38, who has been sick since I was 23, is “You’re too young to have had all these health problems. You’re too young to have pain.”

    I always want to ask in a reply, “Just how old would I have to be for it to be OK that this pain exists?”

    Pain is a war in its own right, and there isn’t an age that makes it any less a tragedy to have to live with its combat injuries.

  20. Dave at 12:35 pm

    I agree with Angela- it is of vital importance for people in pain to find a way to effectively communicate their experience to others. Though medical providers are not trained to hear or understand the suffering of pain, it is important to communicate our humanness with regard to our experience of suffering. The interesting part of this is the dichotomy between suffering pain- are they the same? Can one have pain and not suffer? If a person with pain is also diagnosed with depression- should that be equated as being part of the pain or suffering?Perhaps providers equate pain with suffering-which, in my estimation iis a mistake for it would negate the personal aspects of experience. Perhaps, the depression is treated as the suffering due to pain.
    It is easy to mistake symptoms and diagnosis for suffering and vice versa. I think the focus on objectifying pain has lead to pain being often treated by others as not suffering but as something reduced to clinical control methods-and so the human aspects of pain are lost.
    People in pain should be heard in human terms and not just clinical terms.

  21. Laura Parr at 4:55 pm

    Dealing with chronic pain is all about energy, the more pain you are in, the more energy your body sucks up to deal with it. Pain is like an energy vacuum. So when you are dealing with any amount of pain, you are left feeling as exhausted as if you ran a marathon that day, and every day.

    The only way I have of describing my pain is to have someone imagine getting hit, hard enough to be knocked down, by someone on a bike.

    This is how I feel on a good day. I can do so much on these days. Do a weeks worth of laundry and dishes, sweep the floors, mop if necessary, and cook a really nice meal for myself, such as fried chicken, mashed potatoes and gravy, and broccoli. I feel really good, but imagine how much pain you would be in for 2-3 days if you were hit by someone on a bike.

    On a regular day, imagine getting hit by a car, this is how I live most of my life. I can barely take a shower, and if I do, I’m not going to be able to do more than fix a bagel and tea, or have a bowl of cereal. If I don’t take a shower, then I have enough energy to take care of my cats and bird. Or, I can fry up a burger for a meal. Nothing complicated, if it takes more than one pan or 2-3 ingredients, I’m not able to deal with it. Imagine how badly you would feel, for up to a week, after you were hit by a car. This is basically how I will feel for the rest of my life. There is no rhyme or reason to it, it just is. There is no cure for it, it just is. The pain pills I use will hold the worst at bay, so I feel as if I was hit by a car, instead of a bus.

    But on a really bad day, imagine getting hit by a city bus. I can’t function in any way, shape, or form. I may not even be able to get out of bed without help from someone. I am unable to do anything to take care of myself. My meals have to be prepared for me, but I may not even be able to eat them anyway. These days are the hardest for me to deal with, obviously. But imagine feeling like a beached whale in your bed, simply because you can’t get up out of it. This is what happens when I have a flare, my symptoms are more than my pain pills can handle. There is nothing I can do about it, it just is.

  22. CindyNelson at 4:31 pm

    I enjoyed your story…yes, living in chronic pain just takes the life force out of a person. I am so very tired of the pain..that isn’t controlled. I am looked upon as a drug seeker, when in fact I never ask for narcotics. I just say I am having a lot of pain. I was told there is a new law that providers are no longer going to give rx’s for narcotics on chronic pain. What is really bad in this area St Charles the main medical industry here in Central Oregon, WILL NOT treat your pain if it is a chronic condition. I sat in the ER for 4.5hrs not too long ago only to be told sorry we dont’ treat chronic conditions. I don’t understand, I could have a migrane and get something for the pain..as we know Migranes can’t be proven. I have a proven medical conditon MRI for a really bad back. I also have Fibromyalgia and that pain is bearable..the impingement in my back is not. I had extremely high B/P and throwing up from the pain. I am hoping I can find someone who can help me figure out how to change this policy they have. Especially when you can’t sleep and you seek out help, and only told that they won’t treat you…its not right!!
    In Central Oregon you have to go through pain managment. I have been waiting for 2yrs to get a referral to a pain doctor. I recently went to a neurosurgeon and he ordered a MRI seeing that I have a cyst on my lower spine that could be causing me all this grief. I had a MRI last year and was never told that, he wanted to see if it was growing. Due to all the pain, my insurance denied it now I have to wait again…to appeal it…I really don’t know how or what to get help…any advice would be appreciated!!
    Thank you cindy

  23. Cindy Jones at 2:06 pm

    I just explain the pain but I can’t explain it to where I don’t come off sounding like I’m lying or overreacting or exaggerating. I can’t even believe it myself that it happened to me. I really hate the way my pain Dr. asks me every time, so how bad is it when you wake up and how bad after the medicine and how bad before the medicine. I tell him every time, it hurts, all the time! Some days better than others but there is always pain. It’s all consuming and really messes with your mind! I have mine due to Adhesive Arachnoiditis of the spine, Sjogren’s Syndrome and Fibromyalgia. Sometimes I don’t even know what is causing what, it just hurts, my body that is, my whole body! Usually I will say specifically where it’s hurting the most just so I don’t sound crazy, but it’s usually all over here and there. Just whatever it feels like doing, stabbing, aching, throbbing, pins and needles, burning, stinging! I have muscle spasms, cramping in my feet and legs, my joints are so bad especially my elbows and my back well…it’s just hell, pure, cruel hell! That’s the best way to explain it!

  24. marty at 3:51 am

    Try as you might, loving family members, friends doctor’s etc really do try to understand. But the reality is that unless your body and life is being eaten away by chronic pain it’s pretty much impossible for other’s to fully understand.

  25. Dennis Kinch at 8:25 pm

    I’m a patient advocate, have been for 20 years. That’s why I tend to write long, advice type articles. I apologize, but what else can you do from a chair!
    Anyways – Here’s one side of the discussion and something I found out when I traveled across the US and UK talking to patients and professionals about many pain problems. In the case of “validation” or being believed, this is a multi-pronged, complex problem that requires a lot of understanding to get past.

    First of all, No one will ever understand your pain or what it is doing to your life. Other pain patients can to some degree, but it is a very personal, unique problem for each person and the answers should be thought of the same way. Your meds mixture, your job and boss, your family, your relationship with your doctors, your treatment and hopefully, your cure, are unique to you. Too many times people give a standard answer designed for everyone as a group, but pain is extremely subjective.

    I was lucky to end up (after 10 years of the other) with a great pain clinic, way ahead of its time, even 10 years ago, even now, unfortunately. They started the intake by saying, “We believe you are in pain and we see pain as a disease in itself, despite you having no diagnosis yet. We will get one, but in the meantime, we will attack the pain first, but you must trust us. What we want is what you want, hopefully, your happiness and productivity and your life back, although there will be limits.” This was still the biggest relief I’ve ever had.

    As far as family, friends and other loved ones not believing you, you must understand, they just can’t bring themselves to. They love you and they do not want to admit that you are hurt or sick. This is asking a lot for them, especially depending on your status with these people. The more you are the responsible, “go to” person, the harder it is to get them past this denial. Think about how hard it is for you to believe, not the pain, you can feel that, but believe you are limited, or disabled. And you are with the pain all the time.

    Understanding this has allowed me to get past the issue with those close to me. Only my daughters have admitted they didn’t understand the problem, but it’s 10 years later and they are adults now and have experienced a small degree of what I have. They were just kids when this was at its worst ( I was a single dad) and I forgave them then, as they walked over me laying on the floor and said, “Hey dad, when’s supper gonna be ready?” Kids don’t know better and neither do adults, really. The truth is, “Forgive them for they know not what you go through.”

    As far as medical professionals not believing you, get another doctor. I saw “old school” ignorant doctors who had a hard time believing their own nurses, let alone a “lazy, whiny pain patient who is only faking it to get more drugs!”
    On the other hand, I met many, many open minded docs, mostly with questions for me as to what they can do better. I had many suggestions.

    So I can say, it is my hope and belief that once the “Old school” docs retire, time will heal this wound, Those of us who have suffered through a lot of ignorance, name calling, loss – I’m afraid we are the sacrificed martyrs. We can’t fix the past, we can only move on from it. What we must do, is to make sure our kids, the next generation coming up, NEVER goes through what we went through and it begins with belief!

  26. Joseph G. at 7:28 pm

    I generally fall back on metaphors. . . . “It’s grinding shards of broken pottery or glass imbedded in my back.” . . . “It’s hot bees buzzing up and down my legs.” . . . “A pen knife is stuck between my vertebrae, and every so often someone gives it a twist.” . . . “Pain tendrils squeezing my torso, making me nauseous, murdering sleep.” Metaphors are about the only way I can even begin to describe it — and mostly people still don’t get it, unless they’ve known it. Explaining the chronic part is even tougher: the raw truth that, although the pain cycles through like weather patterns, and has peaks and troughs, it NEVER just stops. And over time it takes up residence not just in your body, but in your psyche, your dream life, your fiscal well-being, your personal relations, your rationality, your creative processes . . . the ripples run everywhere. And besides living in pain, you have to try to “prove” it on account of the disability and drug factors, and so on. You have to “defend” the invisible monster who’s torturing you. Is it any wonder that pain’s symbiotic brother is depression?

  27. Patti at 2:55 pm

    Excellent subject & article!
    I have throbbing, burning, stabbing, pins & needles, etc. of central pain syndrome.
    On extra bad days, I tell my husband I’m having an ‘acid’ burn day (feels like acid is burning my skin). To HCPs, I’ve found the best way for them to somewhat ‘get’ it, is to say, ‘I feel like I’m being cremated while alive.’

  28. Sheryl Donnell at 11:18 am

    I have CPRS, Fibromyalgia, and Chronic Fatigue
    The best way I can describe a major flare up is it feels like my bones were made of glass and someone has shattered them and is grinding the broken glass bits into my body. Then add being so tired you literally cannot drag yourself off the couch to eat. You wonder if the house caught on fire if you could muster the energy to save yourself. Then with the CRPS, my foot is always burning and buzzing from neuopathy. I can’t ever know when that fire will grow and my always painful leg starts swelling and changing colors. When it goes ice cold it feels just like I have it in a bucket of ice but I cannot pull my leg out of it, no matter what I do.

  29. Deb Moore at 10:39 am

    what a great topic for conversation. i really look forward to hearing if others have a solution. i live completely isolated from my family and friends with the exception of my son. he is the only one that has stood by me. everyone else has lots of negative things to say about me. i feel doctors don’t believe my pain. how could they be so callous about it if they believed it. how could they expect me to live this way. my only diagnosis is fibromyalgia. most times i feel i’m too educated about my (hummmmmmmmmm what do we call it?) condition. it amazes me that i have to see doctors and beg for help from people that don’t know as much about my condition as i do. im really tired of hearing exercise. i don’t have the energy to live a normal day and when i do try exercise even for a brief time it makes me hurt so bad i lay and cry.

  30. BL at 8:45 am

    A persons perception is limited to their reality. Hoe can anyone understand severe chronic pain when the worst pain they’ve had doesn’t prevent them from doing things and they can take something over the counter for it ? They can’t and frankly, they dont want to. Did we truly understand what chronic severe pain was like before we had it ? And it is the same way with most drs. Plus, because drs see patients with the same cause of chronic pain, yet it affects different patients differently, they often doubt when the pain is debilitating.

  31. Karlya Boone at 8:42 am

    I have Interstitial Cystitis. I live with chronic bladder pain. Twenty four hours a day, seven days a week. Everything I eat and drink causes pain. I live on the IC diet. No caffeine, no sodas, no tea or coffee, no spicy food, no Mexican food, no Italian food, no cinnamon and absolutely no fruits. When I have flares I use Percocet for that pain. I try to explain the pain to my co-workers and family. I tell them that when I’m having a flare it feels like large shards of glass in my bladder. Because that is exactly what it feels like. Some of them try to understand. Others do not. I have learned to live with a certain amount of pain as most pain sufferers do. I think the article is spot on. If you’ve never had chronic pain it’s almost impossible to understand.

  32. Gracie Bagosy-Young at 8:22 am

    You are exactly right. Thank you for sharing your story! Invisible illnesses are the most difficult to understand. Until you get it, you won’t get it! My CRPS presents itself in my right arm. I have often said that people would be more understanding if my arm had been amputated, then they would have a visual reason for my pain. They would likely have fundraisers and benefits to support my treatments and understand why I cannot work. It is very unfortunate that our “silently suffering” community is so completely misunderstood. This is why we have support groups. We understand each other. We share tips and tricks and look for ways to make accommodations to survive the struggles of daily life. Strength in numbers my friend!