"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."
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."
Validation and Families
- From Dennis' log, 4-12-06, while walking 2400 miles visiting clinics and
hospitals, interviewing many patients and professionals in the Pain community.
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 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 patients often say, “Geez, 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.
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 (not my Boston 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 Massachusetts 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 or son has this disease...” - 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 for years for him. And 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.
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.
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. This walk is a test of my belief systems.
Thanks for listening and thinking about this dilemma. Now, go and form your own expert opinion.
Validation.
Believing the patient.
What a concept!
hospitals, interviewing many patients and professionals in the Pain community.
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 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 patients often say, “Geez, 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.
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 (not my Boston 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 Massachusetts 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 or son has this disease...” - 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 for years for him. And 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.
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.
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. This walk is a test of my belief systems.
Thanks for listening and thinking about this dilemma. Now, go and form your own expert opinion.
Validation.
Believing the patient.
What a concept!