No Safe Place -monotype print by Rosemary Eagle
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Words can be powerful and can have an enormously negative or positive effect. Here are two lists of the best and the worst words that have been spoken to me over the last 8 years. The bad words made me feel humiliated, angry and unsupported. The good words were empowering and hold the most weight, possibly far more than the speaker realised at the time so, I will write them first.
Some positive things that have been said to me
These are some of the best words that I recall because they validated my pain and struggle, most importantly they let me know I was supported by professionals with the knowledge and skills to do everything possible to help me. They gave me hope, comfort, courage and strength.
"This pain is not tenable" "There's no safe place"
2007 - Spoken by a rheumatologist who was trying to help me find some answers to my foot pain prior to my first surgery and the onset of CRPS. Here was someone who validated my pain and did their best to help me, he understood that this pain had invaded my life 24/7. These words inspired a monotype which I titled "No Safe Place" at the top of the page
Yes, you definitely have CRPS, has anyone suggested a spinal cord stimulator or explained the 4 level tier of pain treatment? 2011 - The diagnosis given 4 years after the onset of CRPS validated what I had already guessed and gave me hope that something could be done to help.
"It can't have been easy"
2012- A pain management specialist who after asking me to tell him about the past 5 years and listening, really listening and looking at me, made this comment. It was all he needed to say for me to know he understood, really understood and cared.
"I would not let you suffer like that again, I would put you in hospital"
2013- My pain management specialist's comment when I described to him what my pain flares were like and in particular what they had been like prior to my spinal cord stimulator implant. This was one of the best things I had heard because in the past I had been abandoned several times when I tried to find help including being sent home from emergency at a hospital and told to take a couple of pain killers.
"No, you have done it all yourself, we just gave you the tools"
2014. My pain management specialist. After my second Ketamine infusion that was combined with guidance from the physiotherapist and occupational therapist at the hospital, I had 3 fantastic months of partial weight bearing and low pain, I excitedly told him about my progress and thanked him, that was his response. How empowering was that! I did however invite trouble with my bragging as I went into a pain flare the next week, I still had to fine tune my pacing skills! I'm still working on it!
These are some of the best words that I recall because they validated my pain and struggle, most importantly they let me know I was supported by professionals with the knowledge and skills to do everything possible to help me. They gave me hope, comfort, courage and strength.
"This pain is not tenable" "There's no safe place"
2007 - Spoken by a rheumatologist who was trying to help me find some answers to my foot pain prior to my first surgery and the onset of CRPS. Here was someone who validated my pain and did their best to help me, he understood that this pain had invaded my life 24/7. These words inspired a monotype which I titled "No Safe Place" at the top of the page
Yes, you definitely have CRPS, has anyone suggested a spinal cord stimulator or explained the 4 level tier of pain treatment? 2011 - The diagnosis given 4 years after the onset of CRPS validated what I had already guessed and gave me hope that something could be done to help.
"It can't have been easy"
2012- A pain management specialist who after asking me to tell him about the past 5 years and listening, really listening and looking at me, made this comment. It was all he needed to say for me to know he understood, really understood and cared.
"I would not let you suffer like that again, I would put you in hospital"
2013- My pain management specialist's comment when I described to him what my pain flares were like and in particular what they had been like prior to my spinal cord stimulator implant. This was one of the best things I had heard because in the past I had been abandoned several times when I tried to find help including being sent home from emergency at a hospital and told to take a couple of pain killers.
"No, you have done it all yourself, we just gave you the tools"
2014. My pain management specialist. After my second Ketamine infusion that was combined with guidance from the physiotherapist and occupational therapist at the hospital, I had 3 fantastic months of partial weight bearing and low pain, I excitedly told him about my progress and thanked him, that was his response. How empowering was that! I did however invite trouble with my bragging as I went into a pain flare the next week, I still had to fine tune my pacing skills! I'm still working on it!
Some 'stupid' things that were said to me in the past
(a few years ago now thankfully!)
Some of the comments below indicate that the speaker does not believe my pain levels, has not listened and tried to understand what I have said. This is unbelievably frustrating and unfair at times especially when it comes from someone whom you are relying on for help.
“I had a pain in the heel of my foot once but I just ignored it and within two weeks it had gone”
A member of a Pain Management Program team. No explanation needed
“If you don’t start being active you will grow fat and your husband will hate you”
Comment from first Pain Management Doctor. This comment wins the prize for being the most ludicrous, sexist and outrageous
“ I mean your friends will get sick of you and your pain and you will lose them”
Comment from the same Pain Management Doctor when challenged on the “you will grow fat and your husband will hate you” comment
“If you don’t start being more active your foot will atrophy and your pain will get worse”
Comment from same Pain Management Doctor at another appointment.This was said in a threatening manner; it stated the obvious and implied I was weak and not 'trying hard enough.
“Your foot is red because you don’t use it”
Comment from same Pain Management Doctor who said I didn't have CRPS
“ You haven’t given up trying to walk have you?”
Comment from a physiotherapist. After 4 years of trying to walk and realizing I will never be pain free, this was not what I needed to hear as it implies weight bearing and dealing with the associated pain flares is somehow a matter of will power and that the pain is something I should be able to put up with the same as someone recovering from an injury.
“ Well just see how many times you can walk up and down the corridor using the crutches” followed by “See how many times you can sit down and stand up and how fast you can do this"
Requests from the professional in charge of testing my fitness and stamina as part of a Pain Management Program. I had explained that I can’t walk or weight bear on the bad foot and that I am trying to minimize the use of my good foot as it has arthritis and is under stress due to taking most of my weight; I also explained that I have a painful condition called cervical dystonia and using the crutches aggravates this and if I use the crutches too much I could reach a point where I can’t use them at all.
“I want to get you walking first before I give you exercises”
Comment from a Physiotherapist. I went to a physiotherapist and explained I was not there for him to address my CRPS and my foot pain but that I wanted to be given some new exercises to strengthen the back muscles. He drilled me for 20 minutes about my CRPS and history and that was his final comment.
"Well you've had the operation, you should be better now"
Comment from a doctor who I consulted when the pain returned following the first operation. It was not so much what was said but how it was said i.e. in an aggressive tone that spoke volumes about patients who wasted his time and made a fuss about 'nothing'.
"Forget about the crutches and just start walking"
Professional after my 3rd operation.
(a few years ago now thankfully!)
Some of the comments below indicate that the speaker does not believe my pain levels, has not listened and tried to understand what I have said. This is unbelievably frustrating and unfair at times especially when it comes from someone whom you are relying on for help.
“I had a pain in the heel of my foot once but I just ignored it and within two weeks it had gone”
A member of a Pain Management Program team. No explanation needed
“If you don’t start being active you will grow fat and your husband will hate you”
Comment from first Pain Management Doctor. This comment wins the prize for being the most ludicrous, sexist and outrageous
“ I mean your friends will get sick of you and your pain and you will lose them”
Comment from the same Pain Management Doctor when challenged on the “you will grow fat and your husband will hate you” comment
“If you don’t start being more active your foot will atrophy and your pain will get worse”
Comment from same Pain Management Doctor at another appointment.This was said in a threatening manner; it stated the obvious and implied I was weak and not 'trying hard enough.
“Your foot is red because you don’t use it”
Comment from same Pain Management Doctor who said I didn't have CRPS
“ You haven’t given up trying to walk have you?”
Comment from a physiotherapist. After 4 years of trying to walk and realizing I will never be pain free, this was not what I needed to hear as it implies weight bearing and dealing with the associated pain flares is somehow a matter of will power and that the pain is something I should be able to put up with the same as someone recovering from an injury.
“ Well just see how many times you can walk up and down the corridor using the crutches” followed by “See how many times you can sit down and stand up and how fast you can do this"
Requests from the professional in charge of testing my fitness and stamina as part of a Pain Management Program. I had explained that I can’t walk or weight bear on the bad foot and that I am trying to minimize the use of my good foot as it has arthritis and is under stress due to taking most of my weight; I also explained that I have a painful condition called cervical dystonia and using the crutches aggravates this and if I use the crutches too much I could reach a point where I can’t use them at all.
“I want to get you walking first before I give you exercises”
Comment from a Physiotherapist. I went to a physiotherapist and explained I was not there for him to address my CRPS and my foot pain but that I wanted to be given some new exercises to strengthen the back muscles. He drilled me for 20 minutes about my CRPS and history and that was his final comment.
"Well you've had the operation, you should be better now"
Comment from a doctor who I consulted when the pain returned following the first operation. It was not so much what was said but how it was said i.e. in an aggressive tone that spoke volumes about patients who wasted his time and made a fuss about 'nothing'.
"Forget about the crutches and just start walking"
Professional after my 3rd operation.
