Validation |
Validation is everything to a person living with pain. Validation is what changes you as a person. A lack of validation, for the first time in my life, led me to embellish, or amplify the truth — because on the days that I felt good, no one believed me anyway. For example, on a good day, someone would see me picking up my daughter or getting groceries and say, “Oh, you seem fine to me.” On the good days, you end up embellishing the pain because you don’t want people to think you’re lying about it on the bad days. That was the beginning of how a lack of validation changed me. After you’ve been through a few doctors who don’t believe you, family members constantly dropping hints that you should be working, or your boss threatening to fire you because you don’t seem sick, pretty soon your life becomes wrapped around “How am I going to prove this to anybody?” especially when you don’t have a diagnosis and no one seems to care.
I spent about four years constantly fighting for their validation. For me, diagnosis was key. I already knew something was wrong and I didn’t care what they called it. What I cared about was being able to tell other people something. I used to say “the worst thing about a hidden illness was what patients often say, `Gee, I wish I had cancer.” Cancer is instant validation, but when you have a hidden disease like Paget’s, you’ll never get validation. That lack of validation changes you. It gives you a guilt complex and changes you as a person because pretty soon, you start doubting yourself. There are many, many hidden illnesses.
My Validations
At the end of last year, I remember my therapist patting me on the shoulder and saying, “You know, you have Paget’s disease. You don’t need to tell me anything or justify anything to me.” It was such a huge issue for me, it still makes me emotional thinking about it. I had spent so many years wanting someone to say that to me. It was huge to have someone — especially a medical professional — acknowledge that there was something physically wrong with me. I can tell now that I’m meeting a lot of patients who haven’t heard that yet.
There will always be a lack of understanding. My family and friends still say, “Well, if you can walk that much, you can work.” There will always be that lack of understanding because they can’t feel my pain. To create better understanding for family members, a medical professional has to sit the family down and say, “Your loved one has a serious problem, and this is what it is and this is what it means.”
At Mass General and the Washington University Pain Center, they have a class for family members and friends to help educate them about the patient’s condition. But no one comes — it’s typical, everyone is “too busy” to come. What they really need to do is get serious about it — the primary care doctor should schedule an appointment for the patient and tell the family members to be there. The doctor needs to tell the family that this is important — almost like the patient has cancer or some other serious, measurable disease. Because you know if a person has cancer, family members would be there because they have a job to do — the mother, the brother, the spouse, whoever will be directly responsible for helping care for the patient. The doctor will say, “Now that your loved one has cancer, you’re going to need to do this, you should expect this, etc.” Well, it’s the same thing with pain. Pain changes the family dynamic. I believe the family needs to hear it from a doctor — that’s an important part of validation. If a doctor says, “Your brother has this,” you instantly have validation.
If my doctor, when she diagnosed me, would have called my sister or my mother in and said, “Dennis has a disease called Paget’s disease, and it’s serious. This is what you can expect. It’s extremely painful, and it has been there for years for him. He’s got some problems, and he’s fighting really hard and he needs to stop fighting and reach acceptance,” that would have been very helpful. If that had happened years ago, it could have saved my family. My wife believed I was a malingerer and that I didn’t want to work. She felt like she had already been married to a lazy bum and she didn’t need that again. But even in those days, I didn’t know what was going on. I thought I was being a sissy because I was behaving this way. I used to think, “Man, it feels serious to me,” but I had no way of proving that. Now I know it was fractures in my spine — of course the pain felt serious, but without proof or diagnosis, you end up doubting yourself.
The Pain Amplifier effect
This all goes to the way you lose yourself when you have pain. You become this embellished, scared person who goes into a cocoon. You cut off all your friends and family because you’re sick of the validation issue. Then, you cut off your doctor because you don’t trust doctors anymore. Eventually, all you have left is yourself, and you no longer trust yourself anymore, because you’ve doubted yourself and your pain for so long. You’re in this really bad pit where you feel like, “No one believes me, and I’m going to be stuck with this for the rest of my life.”
When you leave a patient in pain by themselves all the time, their pain amplifiers go way up. Now, everything that was important to them before is pushed to the background. No wonder these people are in so much pain. Their sensitivity to the pain is way up. My talks lately have been focusing on turning the pain amplifiers down by turning those other amplifiers up. One of the reasons I can do this walk is because I’ve learned to turn my pain amplifiers down by doing certain things, like breathing, stretching, taking my meds on time and as directed, and I’ve learned how to turn my other amplifiers up, like socialization, hiking, concentrating on sketching nature, and listening to music — all these cool things that make pain go into the background.
Concentration and Pain
When you have friends over or you’re talking with people, you don’t notice your pain as much. That’s why when you go to the doctor or see friends, they say, “You don’t look like you’re in pain to me,” when actually you’re just concentrating it away and putting it in its place.
A lot of people ask me how I can do this walk. Well, I’ve learned how to do it the right way without hurting myself, and I’m being treated with the right medicines. Then I learned how to put the pain in its place. My pain is from my head to the base of my spine, so I minimize it to only those areas. The pain doesn’t affect my arms, it doesn’t affect my legs, it doesn’t affect my brain for thinking, usually. And when it does, that’s okay. I deal with it and let it happen. That’s when the saying “do what you can, when you can” comes in handy. When you learn how to do it right, it’s pretty amazing what you can do despite the pain. “What you can” can be a heck of a lot more than you think if you start putting your pain into the background.
Now that I have a goal, the issue of validation isn’t as important to me. My goal is much higher than other people’s validation. Everyone tells my kids, “Well, if your dad can walk like that, why can’t he work?” They don’t say it to my face. First of all, I never said I couldn’t work, but they think I don’t want to. You can tell that this is a statement that comes from four years ago, when they first thought I just didn’t feel like working. I used to care about that, especially how my kids would think about it, but now I have something more important to concentrate on. I can’t even think about that for more than a second before I’m thinking, “You know, I’ve got a lot of walking to do today and I need to focus on that.”
I’ve got a list of stuff I’ve got to do — proving to family members, friends or even strangers that I’m a good person isn’t in there. That’s not on my list. I really don’t care what they think now. It doesn’t matter. That started to changed when my therapist tapped me on the shoulder and said, “You’ve got Paget’s disease. When you have good days, you’re pushing so hard on the good days to get things done that it’s making your bad days worse. You’re creating this up and down cycle. You have a disease — on your good days, you may not feel it as much, but it’s still there. You need to slow down. On your bad days, do a little bit more than you’re doing. On your good days, do a lot less than you’re doing. Even things out.” I did that — I evened things out. It was an important lesson for me and helped stop the awful cycle of bad and then good, up and then down.
Overcoming a lack of validation and learning to live well with chronic pain is an evolution. It’s not a button you switch. You don’t suddenly learn how to deal with this. You have to start learning and then evolve toward it, little by little by little. It’s been a year since this started evolving within me and I started changing. It took a relapse for me to “get it,” though. I was doing everything right, but I wasn’t a believer. March 2005 was when I went back and relearned everything about living with chronic pain. It started making more sense. I heard it differently because my frame of reference was different. I re-read everything. I read grief books five years ago and thought I understood the role of grief in pain, but last year I re-read them. Now I realize I understood it five years ago, but I didn’t believe it.
Belief is such a huge thing. I realize now that this isn’t a thinking process. You can’t think your way into believing something — you have to feel it. That takes time. Thinking about it, learning about, gaining knowledge about what you suffer from is an important step toward believing, but believing will sweep over you at some point when you’re ready for it and that’s when you start learning and everything makes sense. A lot of patients ask me, “How do you do what you’re doing? I know everything you know about pain. How do you get to where you’re at?” I often tell them, “You’re this close — I can smell it. It will happen, but it isn’t something you can just flick a switch. You’re on the right track. You’re learning things, you’re practicing things. You just don’t believe you can actually do this. When that happens to you, you can do amazing things. It seems hopeless until that belief sets in. Then all hope is there for you to feel.”
This walk is to prove all of these issues — that I can do this without hurting myself, that I might get better from this, but if I don’t, that’s okay, that I don’t need validation, that I’m not scared anymore. I know that they say these diseases are permanent and that they are deteriorating — that the best I can hope for is that they’ll slow down. Well, that’s the best they can hope for. But I have a different kind of hope. I believe that the mind and human spirit is so strong, that you can overcome amazing things. Once you get your mind, your body, and your spirit all on the same page, you can overcome amazing things.
Now, I’m not afraid to say in a pain clinic that the other thing you need do is believe in something — you have to believe in something greater than yourself. You have to, because if you don’t then you’re lost in yourself. So whatever it is that you believe in, it counts and you need it now. That’s the final strength. You can get into the details of belief, but I don’t care about that. The details don’t matter to me. What matters is the concept — you don’t really believe until you’re tested. I look at this as a test of my own belief systems.
I think this is the chapter where we can question how we show we don't really believe in ourselves. There will be a chapter on self-validation, but hopefully by the time you get to that point, you won't be embellishing your symptoms anymore. Now, don't be offended just yet. Remember, I'm speaking from experience. If this next part doesn't include you, then read it, and then dismiss it.
Embellishment:
Definition; as it applies to pain: To over exaggerate the truth. To add to the facts to manipulate opinion in your favor. To make something more than it is. To add unnecessary importance to something, to gain attention.
This is extremely important in the entire pain spectrum. It can cause confusion in understanding or diagnosing pain, or in the search for medicines and procedures that work. It can be the underlying cause of non-validation. I am walking a fine line here. On one side is the thought “it's all in your head” or “you're faking it”. On the other side is the idea that, the negative side of the cycle, which you are probably in right now, is controlling the words you say. Understand this, I am not saying “it's in your head.” If that were the case, if what's in our head actually happens, then I would constantly be surrounded by good looking cheerleaders and I would still be playing hockey and football!
I am not saying “you're faking it” either. Because there are no payoffs to doing that. Most of you have been in this wringer far too long to be going after insurance money or SSI or worker's comp claims. If that's the case, and you really are this person, you're being ignorant. Most of us in chronic pain have lost a heckuva lot more than any settlement could be worth.
If this is true then I must be talking about the latter, those who have been in the negative cycle for so long now that there is a need to speak through embellishment. Let me cite examples and maybe some of you may have thoughts as to why this exists. First, there are the thousands of pain sufferers of I talk to personally, including me. A doctor will say “what is your pain, on a scale of one to 10 right now, 10 being the worst you've ever felt?” The answer will inevitably come back “11!” Or sometimes they will add, “this is the worst I've ever felt.”
I don't know about you, but the worst I've ever felt, the “10 “I use to measure pain's worst effect, is something that was tied to an “emergency room, half conscious, unable to do anything except try to stay conscious to answer questions by paramedics as they quickly shot me full of strong drugs to quell the serious nature of my pain” kind of visit. I assume most, if not all of you have experienced a “10” that would be one impressive story, and I'm sure it meant complete incapacity, except for periodic writhing and screaming. If that's what you experience now, why aren't you in the hospital? How are you talking to me? Do you see how confusing this can be to the average non-pain sufferer? Whether it be a doctor trying to help you, or a family member trying to understand you.
Or, does embellishment stem from non-validation? Have you learned to answer or act this way because no one seems to believe you, so you must over act to get proper attention. Whatever the case is, we must stop this and take the emotion out of the response. People write to me all the time, or talk to me, and say how badly they're doing that day “can't move, can't walk, can't stay awake, can't travel, can't talk, can't eat, can't sleep, et cetera, et cetera. This is embellishment. Unless you have an attendant who aids you in normal bodily functions, such as going to the bathroom, my guess is, you can walk. If you're going to the bathroom, at least once a week, then you must be able to eat. If you're not dead, you must be sleeping at some point. To me, and your family members, and especially to doctors trying to diagnose you, you must be truthful, as exact as possible, and cold and clinical in your description of your pain and quality of life.
Here's something to try. What if, with all of your worst days and problems I said “let's grade the results on a curve. Let's say that your situation was only 50% is bad as you surmise it to be. Start at that point. Remember, it could be a lot worse. I have met people who were far worse than me physically, yet a lot more positive and productive. I'm sure you have too. Bring your curve back to this point where you say “if I don't do something about this I will be a lot worse in a year. I will be completely disabled, with 24-hour caretakers in a hospital or hospice. I will be dying. I will have no future. That's what 90% looks like. 100% is, yes, death. You can see how subtle this embellishment thing is. Your mind and emotions are making this era of your life the “worst it can be.” When actually it isn't.
Another clue, if you were skeptical of saying “50%” and this should prove how much you need for others to understand how bad this is for you. This is just a number, totally your number, it has no other meaning than to say “could your medical problem be twice as bad?” Yes, it probably can, even if twice as bad means death. Unfortunately, this does not mean death. It just means twice the pain, twice the problems, twice the negativity. Are you ready for that?
Now, think of your current circumstances. Can you put them at half as bad as the ultimate? Say to yourself, “I have a lot of trouble walking, but I can walk some.” Or I don't have much appetite, but I can get food down, and I need to do that no matter how bad I feel.”
How bad is it exactly? “I lost my job, but still have my family.” I lost my home but still get warm meals”. I lost my job but receive disability. See what I mean? Imagine those people who have it so much worse than you, but now imagine, if things don't change, you will be there! Is that something you want? However it is that you believe in mind, body, spirit, you must understand that your exact thoughts mixed with embellished emotions, will cause your body, and eventually your spirit to fall down the same well. Don't let this happen without reason.
See your circumstance as 50% as bad as you think it is. Start from there. Now see if you start to turn around your thinking, clinical in your approach to your pain. Give the rest of us out here a chance to understand you and your reality of pain. Give us some kind of measurement system and give yourself a break. It is very difficult to separate emotion from pain. With traumatic pain, such as hitting your thumb with a hammer, it's almost impossible. With chronic pain however, we're used to having a good amount of pain around us all of the time. Hopefully, at this point in our development, we've learned not to let the pain control us or cause us to react as though there was an emergency. This is even more apparent at a doctor's office because it is there we need so much validation. It is there we are forced to think about our pain and to concentrate on it. It is there that we are asked “where does it hurt? How bad is it? How often does it hurt?”
It is extremely tempting to become supersensitive to pain's intensity at any appointment that would ask these questions. Remember though, most doctors, clinicians, insurance representatives, administrators, or anyone involved in your medical case, is much like a car mechanic. If you are in a terrible accident and, after the trauma, you decide to bring your car in to have it fixed, and your mechanic says “what's wrong with it?” And you started crying, and moaning, and yelling about the trauma of the accident, your mechanic would have to somehow glean what's wrong with your car from your story of the accident. This can be terribly confusing and can lead the mechanic down the wrong diagnostic path. Sometimes our pain is so present, is so devastating, that we go to the doctor with the idea that he might hug us and say “there there, I've seen this before and yours is one tragic case.” Or maybe say “wow! you have a classic case of...”, but there is much more to this, and things in any business, including the medical profession, move at a much slower pace than you might want.
A doctor sees you for 15 to 30 minutes once per month, maybe, and his staff may see you a bit more but not much more. Think of the hundreds and hundreds of cases this doctor and his staff see in one month! To you, it is everything, to him you are one of many. If you understand also that pain is subjective, meaning that to us, it is the worst ever, but to an observer, probably not that bad. I can tell you this, a doctor will only react with an emergency interest in your pain, if it's an actual emergency. Which means that if he is calm, and clinical, and doesn't send you immediately to the emergency room, it's most likely not an actual emergency. This may sound a bit harsh, but I've lived it. I lived it again yesterday. Yes, that's right, as I'm writing this chapter, months after ending my walk, deep, deep, deep into the positive side of the cycle, I still fell right back into this trap.
As I sat outside the waiting room, 30 minutes early as usual for my spine appointment, all of the old ways came rushing in to my mind. Soon, my body joined in and I started feeling pain and numbness and I started becoming afraid. My sensitivities to the pain had reached a high point and my breathing became shallow, my heart palpitating and my first thought was “thank God it happened here.” I allowed my spirit to jump in and then all three were following each other down the well and I had to read these words, right there in the doctor's office, and my mind said “hold on!” Then I said to myself, “wait a second. What are you thinking? Stop it! You know better than that! Calm down. Keep taking diaphragmatic breaths. Slow, slow, yes. Now, where does it hurt? How does it hurt?”
You see, to this day, I still have to heed my own words. I have to do what I'm telling you to do, but no one told me this before. I had to guess it from a doctor's attitude. After years of wondering “do they even care about me?”
Yes. They care about you physically. Yes, just as the auto mechanic cares about your car, they have feelings, and yes, they are concerned about your tragedy and I'm sure they feel bad about your malaise, but they see 50 patients a day. At least 10 of them are really bad stories. Remember, like the mechanic, a doctor is human. They are people. They don't have magic cures, or spells, or even answers sometimes. They have a lot of knowledge of the most complex machine in the universe, the most intricate organism ever, the human body. The better you describe to a mechanic, in simple mechanical terms, what is wrong with your car, the better chance he has of fixing it. Cold and clinical, or at least as much as is humanly possible.
Picture it this way, going back to that mind, body, spirit thing. A doctor has enormous education and experience dealing with the body. They understand, as much as science allows, the physical workings of all the tissues. Some doctors may understand the mind and how that plays into the bodily functions. They understand, as much a science allows, how we think and sometimes, our emotions as thoughts. In the stud, diagnosis and treatment of pain, this is what doctors bring to the table. Only we can bring spirit. Yes, there are people who are educated in what the Spirit is, or in spirituality, but only we can understand it. This is what we bring to the table. I'll say it again. In the study, diagnosis, and treatment of pain this is what we can offer. The power of our spirit! If you think the human body is complex, or the human mind is layered in intricacies, try to nail down the spirit! Impossible! And anyone who says they can is flat out lying, or guessing, or hoping, but they can't. We can hardly understand our own spirit, how could they possibly hope to?
In putting pain into the background, we must assimilate the mind and body into the spirit. We must take what we learn from others and apply it to using our spirit, we can do this. We must, however do our homework. We are not just looking for someone else's opinion on our mind or body, we are assembling the facts so as to better understand our whole being. Asking the doctor about your physical well-being, and no one else, is a one-sided opinion. Remember, they are human. The more we understand about the body, the better chance we have of understanding the mind and the spirit. So it stands to reason that we must get our information from many sources about the physical, doctors, physical therapists, books, hearsay, the news, the Internet, or anywhere. We must weed through this wealth of knowledge and separate opinion from fact.
I spent about four years constantly fighting for their validation. For me, diagnosis was key. I already knew something was wrong and I didn’t care what they called it. What I cared about was being able to tell other people something. I used to say “the worst thing about a hidden illness was what patients often say, `Gee, I wish I had cancer.” Cancer is instant validation, but when you have a hidden disease like Paget’s, you’ll never get validation. That lack of validation changes you. It gives you a guilt complex and changes you as a person because pretty soon, you start doubting yourself. There are many, many hidden illnesses.
My Validations
At the end of last year, I remember my therapist patting me on the shoulder and saying, “You know, you have Paget’s disease. You don’t need to tell me anything or justify anything to me.” It was such a huge issue for me, it still makes me emotional thinking about it. I had spent so many years wanting someone to say that to me. It was huge to have someone — especially a medical professional — acknowledge that there was something physically wrong with me. I can tell now that I’m meeting a lot of patients who haven’t heard that yet.
There will always be a lack of understanding. My family and friends still say, “Well, if you can walk that much, you can work.” There will always be that lack of understanding because they can’t feel my pain. To create better understanding for family members, a medical professional has to sit the family down and say, “Your loved one has a serious problem, and this is what it is and this is what it means.”
At Mass General and the Washington University Pain Center, they have a class for family members and friends to help educate them about the patient’s condition. But no one comes — it’s typical, everyone is “too busy” to come. What they really need to do is get serious about it — the primary care doctor should schedule an appointment for the patient and tell the family members to be there. The doctor needs to tell the family that this is important — almost like the patient has cancer or some other serious, measurable disease. Because you know if a person has cancer, family members would be there because they have a job to do — the mother, the brother, the spouse, whoever will be directly responsible for helping care for the patient. The doctor will say, “Now that your loved one has cancer, you’re going to need to do this, you should expect this, etc.” Well, it’s the same thing with pain. Pain changes the family dynamic. I believe the family needs to hear it from a doctor — that’s an important part of validation. If a doctor says, “Your brother has this,” you instantly have validation.
If my doctor, when she diagnosed me, would have called my sister or my mother in and said, “Dennis has a disease called Paget’s disease, and it’s serious. This is what you can expect. It’s extremely painful, and it has been there for years for him. He’s got some problems, and he’s fighting really hard and he needs to stop fighting and reach acceptance,” that would have been very helpful. If that had happened years ago, it could have saved my family. My wife believed I was a malingerer and that I didn’t want to work. She felt like she had already been married to a lazy bum and she didn’t need that again. But even in those days, I didn’t know what was going on. I thought I was being a sissy because I was behaving this way. I used to think, “Man, it feels serious to me,” but I had no way of proving that. Now I know it was fractures in my spine — of course the pain felt serious, but without proof or diagnosis, you end up doubting yourself.
The Pain Amplifier effect
This all goes to the way you lose yourself when you have pain. You become this embellished, scared person who goes into a cocoon. You cut off all your friends and family because you’re sick of the validation issue. Then, you cut off your doctor because you don’t trust doctors anymore. Eventually, all you have left is yourself, and you no longer trust yourself anymore, because you’ve doubted yourself and your pain for so long. You’re in this really bad pit where you feel like, “No one believes me, and I’m going to be stuck with this for the rest of my life.”
When you leave a patient in pain by themselves all the time, their pain amplifiers go way up. Now, everything that was important to them before is pushed to the background. No wonder these people are in so much pain. Their sensitivity to the pain is way up. My talks lately have been focusing on turning the pain amplifiers down by turning those other amplifiers up. One of the reasons I can do this walk is because I’ve learned to turn my pain amplifiers down by doing certain things, like breathing, stretching, taking my meds on time and as directed, and I’ve learned how to turn my other amplifiers up, like socialization, hiking, concentrating on sketching nature, and listening to music — all these cool things that make pain go into the background.
Concentration and Pain
When you have friends over or you’re talking with people, you don’t notice your pain as much. That’s why when you go to the doctor or see friends, they say, “You don’t look like you’re in pain to me,” when actually you’re just concentrating it away and putting it in its place.
A lot of people ask me how I can do this walk. Well, I’ve learned how to do it the right way without hurting myself, and I’m being treated with the right medicines. Then I learned how to put the pain in its place. My pain is from my head to the base of my spine, so I minimize it to only those areas. The pain doesn’t affect my arms, it doesn’t affect my legs, it doesn’t affect my brain for thinking, usually. And when it does, that’s okay. I deal with it and let it happen. That’s when the saying “do what you can, when you can” comes in handy. When you learn how to do it right, it’s pretty amazing what you can do despite the pain. “What you can” can be a heck of a lot more than you think if you start putting your pain into the background.
Now that I have a goal, the issue of validation isn’t as important to me. My goal is much higher than other people’s validation. Everyone tells my kids, “Well, if your dad can walk like that, why can’t he work?” They don’t say it to my face. First of all, I never said I couldn’t work, but they think I don’t want to. You can tell that this is a statement that comes from four years ago, when they first thought I just didn’t feel like working. I used to care about that, especially how my kids would think about it, but now I have something more important to concentrate on. I can’t even think about that for more than a second before I’m thinking, “You know, I’ve got a lot of walking to do today and I need to focus on that.”
I’ve got a list of stuff I’ve got to do — proving to family members, friends or even strangers that I’m a good person isn’t in there. That’s not on my list. I really don’t care what they think now. It doesn’t matter. That started to changed when my therapist tapped me on the shoulder and said, “You’ve got Paget’s disease. When you have good days, you’re pushing so hard on the good days to get things done that it’s making your bad days worse. You’re creating this up and down cycle. You have a disease — on your good days, you may not feel it as much, but it’s still there. You need to slow down. On your bad days, do a little bit more than you’re doing. On your good days, do a lot less than you’re doing. Even things out.” I did that — I evened things out. It was an important lesson for me and helped stop the awful cycle of bad and then good, up and then down.
Overcoming a lack of validation and learning to live well with chronic pain is an evolution. It’s not a button you switch. You don’t suddenly learn how to deal with this. You have to start learning and then evolve toward it, little by little by little. It’s been a year since this started evolving within me and I started changing. It took a relapse for me to “get it,” though. I was doing everything right, but I wasn’t a believer. March 2005 was when I went back and relearned everything about living with chronic pain. It started making more sense. I heard it differently because my frame of reference was different. I re-read everything. I read grief books five years ago and thought I understood the role of grief in pain, but last year I re-read them. Now I realize I understood it five years ago, but I didn’t believe it.
Belief is such a huge thing. I realize now that this isn’t a thinking process. You can’t think your way into believing something — you have to feel it. That takes time. Thinking about it, learning about, gaining knowledge about what you suffer from is an important step toward believing, but believing will sweep over you at some point when you’re ready for it and that’s when you start learning and everything makes sense. A lot of patients ask me, “How do you do what you’re doing? I know everything you know about pain. How do you get to where you’re at?” I often tell them, “You’re this close — I can smell it. It will happen, but it isn’t something you can just flick a switch. You’re on the right track. You’re learning things, you’re practicing things. You just don’t believe you can actually do this. When that happens to you, you can do amazing things. It seems hopeless until that belief sets in. Then all hope is there for you to feel.”
This walk is to prove all of these issues — that I can do this without hurting myself, that I might get better from this, but if I don’t, that’s okay, that I don’t need validation, that I’m not scared anymore. I know that they say these diseases are permanent and that they are deteriorating — that the best I can hope for is that they’ll slow down. Well, that’s the best they can hope for. But I have a different kind of hope. I believe that the mind and human spirit is so strong, that you can overcome amazing things. Once you get your mind, your body, and your spirit all on the same page, you can overcome amazing things.
Now, I’m not afraid to say in a pain clinic that the other thing you need do is believe in something — you have to believe in something greater than yourself. You have to, because if you don’t then you’re lost in yourself. So whatever it is that you believe in, it counts and you need it now. That’s the final strength. You can get into the details of belief, but I don’t care about that. The details don’t matter to me. What matters is the concept — you don’t really believe until you’re tested. I look at this as a test of my own belief systems.
I think this is the chapter where we can question how we show we don't really believe in ourselves. There will be a chapter on self-validation, but hopefully by the time you get to that point, you won't be embellishing your symptoms anymore. Now, don't be offended just yet. Remember, I'm speaking from experience. If this next part doesn't include you, then read it, and then dismiss it.
Embellishment:
Definition; as it applies to pain: To over exaggerate the truth. To add to the facts to manipulate opinion in your favor. To make something more than it is. To add unnecessary importance to something, to gain attention.
This is extremely important in the entire pain spectrum. It can cause confusion in understanding or diagnosing pain, or in the search for medicines and procedures that work. It can be the underlying cause of non-validation. I am walking a fine line here. On one side is the thought “it's all in your head” or “you're faking it”. On the other side is the idea that, the negative side of the cycle, which you are probably in right now, is controlling the words you say. Understand this, I am not saying “it's in your head.” If that were the case, if what's in our head actually happens, then I would constantly be surrounded by good looking cheerleaders and I would still be playing hockey and football!
I am not saying “you're faking it” either. Because there are no payoffs to doing that. Most of you have been in this wringer far too long to be going after insurance money or SSI or worker's comp claims. If that's the case, and you really are this person, you're being ignorant. Most of us in chronic pain have lost a heckuva lot more than any settlement could be worth.
If this is true then I must be talking about the latter, those who have been in the negative cycle for so long now that there is a need to speak through embellishment. Let me cite examples and maybe some of you may have thoughts as to why this exists. First, there are the thousands of pain sufferers of I talk to personally, including me. A doctor will say “what is your pain, on a scale of one to 10 right now, 10 being the worst you've ever felt?” The answer will inevitably come back “11!” Or sometimes they will add, “this is the worst I've ever felt.”
I don't know about you, but the worst I've ever felt, the “10 “I use to measure pain's worst effect, is something that was tied to an “emergency room, half conscious, unable to do anything except try to stay conscious to answer questions by paramedics as they quickly shot me full of strong drugs to quell the serious nature of my pain” kind of visit. I assume most, if not all of you have experienced a “10” that would be one impressive story, and I'm sure it meant complete incapacity, except for periodic writhing and screaming. If that's what you experience now, why aren't you in the hospital? How are you talking to me? Do you see how confusing this can be to the average non-pain sufferer? Whether it be a doctor trying to help you, or a family member trying to understand you.
Or, does embellishment stem from non-validation? Have you learned to answer or act this way because no one seems to believe you, so you must over act to get proper attention. Whatever the case is, we must stop this and take the emotion out of the response. People write to me all the time, or talk to me, and say how badly they're doing that day “can't move, can't walk, can't stay awake, can't travel, can't talk, can't eat, can't sleep, et cetera, et cetera. This is embellishment. Unless you have an attendant who aids you in normal bodily functions, such as going to the bathroom, my guess is, you can walk. If you're going to the bathroom, at least once a week, then you must be able to eat. If you're not dead, you must be sleeping at some point. To me, and your family members, and especially to doctors trying to diagnose you, you must be truthful, as exact as possible, and cold and clinical in your description of your pain and quality of life.
Here's something to try. What if, with all of your worst days and problems I said “let's grade the results on a curve. Let's say that your situation was only 50% is bad as you surmise it to be. Start at that point. Remember, it could be a lot worse. I have met people who were far worse than me physically, yet a lot more positive and productive. I'm sure you have too. Bring your curve back to this point where you say “if I don't do something about this I will be a lot worse in a year. I will be completely disabled, with 24-hour caretakers in a hospital or hospice. I will be dying. I will have no future. That's what 90% looks like. 100% is, yes, death. You can see how subtle this embellishment thing is. Your mind and emotions are making this era of your life the “worst it can be.” When actually it isn't.
Another clue, if you were skeptical of saying “50%” and this should prove how much you need for others to understand how bad this is for you. This is just a number, totally your number, it has no other meaning than to say “could your medical problem be twice as bad?” Yes, it probably can, even if twice as bad means death. Unfortunately, this does not mean death. It just means twice the pain, twice the problems, twice the negativity. Are you ready for that?
Now, think of your current circumstances. Can you put them at half as bad as the ultimate? Say to yourself, “I have a lot of trouble walking, but I can walk some.” Or I don't have much appetite, but I can get food down, and I need to do that no matter how bad I feel.”
How bad is it exactly? “I lost my job, but still have my family.” I lost my home but still get warm meals”. I lost my job but receive disability. See what I mean? Imagine those people who have it so much worse than you, but now imagine, if things don't change, you will be there! Is that something you want? However it is that you believe in mind, body, spirit, you must understand that your exact thoughts mixed with embellished emotions, will cause your body, and eventually your spirit to fall down the same well. Don't let this happen without reason.
See your circumstance as 50% as bad as you think it is. Start from there. Now see if you start to turn around your thinking, clinical in your approach to your pain. Give the rest of us out here a chance to understand you and your reality of pain. Give us some kind of measurement system and give yourself a break. It is very difficult to separate emotion from pain. With traumatic pain, such as hitting your thumb with a hammer, it's almost impossible. With chronic pain however, we're used to having a good amount of pain around us all of the time. Hopefully, at this point in our development, we've learned not to let the pain control us or cause us to react as though there was an emergency. This is even more apparent at a doctor's office because it is there we need so much validation. It is there we are forced to think about our pain and to concentrate on it. It is there that we are asked “where does it hurt? How bad is it? How often does it hurt?”
It is extremely tempting to become supersensitive to pain's intensity at any appointment that would ask these questions. Remember though, most doctors, clinicians, insurance representatives, administrators, or anyone involved in your medical case, is much like a car mechanic. If you are in a terrible accident and, after the trauma, you decide to bring your car in to have it fixed, and your mechanic says “what's wrong with it?” And you started crying, and moaning, and yelling about the trauma of the accident, your mechanic would have to somehow glean what's wrong with your car from your story of the accident. This can be terribly confusing and can lead the mechanic down the wrong diagnostic path. Sometimes our pain is so present, is so devastating, that we go to the doctor with the idea that he might hug us and say “there there, I've seen this before and yours is one tragic case.” Or maybe say “wow! you have a classic case of...”, but there is much more to this, and things in any business, including the medical profession, move at a much slower pace than you might want.
A doctor sees you for 15 to 30 minutes once per month, maybe, and his staff may see you a bit more but not much more. Think of the hundreds and hundreds of cases this doctor and his staff see in one month! To you, it is everything, to him you are one of many. If you understand also that pain is subjective, meaning that to us, it is the worst ever, but to an observer, probably not that bad. I can tell you this, a doctor will only react with an emergency interest in your pain, if it's an actual emergency. Which means that if he is calm, and clinical, and doesn't send you immediately to the emergency room, it's most likely not an actual emergency. This may sound a bit harsh, but I've lived it. I lived it again yesterday. Yes, that's right, as I'm writing this chapter, months after ending my walk, deep, deep, deep into the positive side of the cycle, I still fell right back into this trap.
As I sat outside the waiting room, 30 minutes early as usual for my spine appointment, all of the old ways came rushing in to my mind. Soon, my body joined in and I started feeling pain and numbness and I started becoming afraid. My sensitivities to the pain had reached a high point and my breathing became shallow, my heart palpitating and my first thought was “thank God it happened here.” I allowed my spirit to jump in and then all three were following each other down the well and I had to read these words, right there in the doctor's office, and my mind said “hold on!” Then I said to myself, “wait a second. What are you thinking? Stop it! You know better than that! Calm down. Keep taking diaphragmatic breaths. Slow, slow, yes. Now, where does it hurt? How does it hurt?”
You see, to this day, I still have to heed my own words. I have to do what I'm telling you to do, but no one told me this before. I had to guess it from a doctor's attitude. After years of wondering “do they even care about me?”
Yes. They care about you physically. Yes, just as the auto mechanic cares about your car, they have feelings, and yes, they are concerned about your tragedy and I'm sure they feel bad about your malaise, but they see 50 patients a day. At least 10 of them are really bad stories. Remember, like the mechanic, a doctor is human. They are people. They don't have magic cures, or spells, or even answers sometimes. They have a lot of knowledge of the most complex machine in the universe, the most intricate organism ever, the human body. The better you describe to a mechanic, in simple mechanical terms, what is wrong with your car, the better chance he has of fixing it. Cold and clinical, or at least as much as is humanly possible.
Picture it this way, going back to that mind, body, spirit thing. A doctor has enormous education and experience dealing with the body. They understand, as much as science allows, the physical workings of all the tissues. Some doctors may understand the mind and how that plays into the bodily functions. They understand, as much a science allows, how we think and sometimes, our emotions as thoughts. In the stud, diagnosis and treatment of pain, this is what doctors bring to the table. Only we can bring spirit. Yes, there are people who are educated in what the Spirit is, or in spirituality, but only we can understand it. This is what we bring to the table. I'll say it again. In the study, diagnosis, and treatment of pain this is what we can offer. The power of our spirit! If you think the human body is complex, or the human mind is layered in intricacies, try to nail down the spirit! Impossible! And anyone who says they can is flat out lying, or guessing, or hoping, but they can't. We can hardly understand our own spirit, how could they possibly hope to?
In putting pain into the background, we must assimilate the mind and body into the spirit. We must take what we learn from others and apply it to using our spirit, we can do this. We must, however do our homework. We are not just looking for someone else's opinion on our mind or body, we are assembling the facts so as to better understand our whole being. Asking the doctor about your physical well-being, and no one else, is a one-sided opinion. Remember, they are human. The more we understand about the body, the better chance we have of understanding the mind and the spirit. So it stands to reason that we must get our information from many sources about the physical, doctors, physical therapists, books, hearsay, the news, the Internet, or anywhere. We must weed through this wealth of knowledge and separate opinion from fact.