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We are NOT whiners....the TRUTH !
Just a few days ago, I felt and posted like a whiner. I carefully read the comments people sent in. And something shifted inside me. I still am in pain, tired, and all the rest. But, I see this all from a different place. I am copying and pasting something I posted on Oprah's message board for fibro. She apparently had Dr. Oz on back in the fall and was as dismissive as many others are. I didn't see it, so I don't know first hand. I wish everyone a restful, relaxed Sunday.
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I am quite tired of seeing/hearing fibro sufferers characterized as "do-nothings." Whether it is a high visibility show such as Oprah, Dr. Phil, or any other celeb....whether it is that doc you have to see....whether it is your family, who humor you, nod at your pain, and then wonder why you don't just get back to work:
Fibromyalgia/CFS/multiple chemical sensitivity/etc. are all genuine diagnosable conditions that are as real as diabetes, cancer or arthritis. We need to find the energy to be pro-active in dealing with our doctors about this. I, too, have had an uphill battle in dealing with medical professionals. In the last few years, there seems to be more professionals who acknowledge that what we have is real. But, they can be hard to locate. If your doc gives you a hard time about any aspect, from diagnosis to treatment to referral, my advice is to change docs. Get a appt. with the top person in your state or region; I went to the UFlorida school of medicine (dept. of rheumotology) and got an appt. with the head doc. I had to wait 4 months, but when he validated my symptoms as genuine, severe fibro, it undid alot of my anger and frustration. He would have continued as my treating Dr. but I was moving to WV. One thing he said was NO treatment "cures" fibro. Managing symptoms is the best to be hoped for. He told me that any medication(s) will likely need to be rotated with others to stay effective. SO, find a doc who knows what of he speaks and see him/her.
Alternative meds, like traditional ones, help some people some of the time. And most lose their effectiveness and need to be rotated out, with others rotating in. I personally don't have enough money to try noni, or elaborate vitamin protocols.
We have endured in spite of decades of pain and fatigue. I believe that if our personalities were studied, it would be found that most of us are hard-driven women, who worked far too hard, for far too little, while balancing family needs, for far too long. We totally ignored our body's signals to rest; we took care of massive work/family responsibilities, with little bitching. We were often extra-talented, type A people ... the kind bosses love, because we will give 150%. They took advantage of our dedication, with our tacit permission. We raised children, endured husbands (or got divorces), balanced budgets, and so much more. And our body and minds, so long ignored, are unable to keep up that pace.
Now, here we are being victimized by a medical community which generally chooses to view us as: whiners and do-nothings. We were never whiners....we were never do-nothings--and we haven't started now. We are simply stating our health as it is. Until we demand to be heard, we won't be.
I also believe that because we are generally so exhausted, we can't even mobilize for national attention, like folks do for breast cancer or autism. If you look at any medical condition which is now recognized by mainstream America, it was usually family members who first and continually pushed for validation.
I am not sure of the way out of this labyrinth, but I will do my little bit. I won't call talking about my list of symptoms, whining. I won't stay with any doctor who dismissively deals with me. I will talk freely about my illness, as it is; hold my head high, and expect recognition. I will educate those who don't know about it. I will be kinder to myself, and never call myself a "victim" of this illness. I will keep searching for help with medical care and medicine (such as PPrX). I will keep fighting for my SSDI. I will educate my family; they will be my strongest advocates if they really understand.
I still ache; my nerve pain is excruciating; I am preaching to the choir, so I shall stop. But, I am looking at this whole situation from a different place. I am a not a powerless victim of this illness, doctors, family or the public at large (such as Oprah's show). I am a person in chronic pain, who deserves and will find the best medical care available to me.
Any thoughts?
Hugs to all of you
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I am quite tired of seeing/hearing fibro sufferers characterized as "do-nothings." Whether it is a high visibility show such as Oprah, Dr. Phil, or any other celeb....whether it is that doc you have to see....whether it is your family, who humor you, nod at your pain, and then wonder why you don't just get back to work:
Fibromyalgia/CFS/multiple chemical sensitivity/etc. are all genuine diagnosable conditions that are as real as diabetes, cancer or arthritis. We need to find the energy to be pro-active in dealing with our doctors about this. I, too, have had an uphill battle in dealing with medical professionals. In the last few years, there seems to be more professionals who acknowledge that what we have is real. But, they can be hard to locate. If your doc gives you a hard time about any aspect, from diagnosis to treatment to referral, my advice is to change docs. Get a appt. with the top person in your state or region; I went to the UFlorida school of medicine (dept. of rheumotology) and got an appt. with the head doc. I had to wait 4 months, but when he validated my symptoms as genuine, severe fibro, it undid alot of my anger and frustration. He would have continued as my treating Dr. but I was moving to WV. One thing he said was NO treatment "cures" fibro. Managing symptoms is the best to be hoped for. He told me that any medication(s) will likely need to be rotated with others to stay effective. SO, find a doc who knows what of he speaks and see him/her.
Alternative meds, like traditional ones, help some people some of the time. And most lose their effectiveness and need to be rotated out, with others rotating in. I personally don't have enough money to try noni, or elaborate vitamin protocols.
We have endured in spite of decades of pain and fatigue. I believe that if our personalities were studied, it would be found that most of us are hard-driven women, who worked far too hard, for far too little, while balancing family needs, for far too long. We totally ignored our body's signals to rest; we took care of massive work/family responsibilities, with little bitching. We were often extra-talented, type A people ... the kind bosses love, because we will give 150%. They took advantage of our dedication, with our tacit permission. We raised children, endured husbands (or got divorces), balanced budgets, and so much more. And our body and minds, so long ignored, are unable to keep up that pace.
Now, here we are being victimized by a medical community which generally chooses to view us as: whiners and do-nothings. We were never whiners....we were never do-nothings--and we haven't started now. We are simply stating our health as it is. Until we demand to be heard, we won't be.
I also believe that because we are generally so exhausted, we can't even mobilize for national attention, like folks do for breast cancer or autism. If you look at any medical condition which is now recognized by mainstream America, it was usually family members who first and continually pushed for validation.
I am not sure of the way out of this labyrinth, but I will do my little bit. I won't call talking about my list of symptoms, whining. I won't stay with any doctor who dismissively deals with me. I will talk freely about my illness, as it is; hold my head high, and expect recognition. I will educate those who don't know about it. I will be kinder to myself, and never call myself a "victim" of this illness. I will keep searching for help with medical care and medicine (such as PPrX). I will keep fighting for my SSDI. I will educate my family; they will be my strongest advocates if they really understand.
I still ache; my nerve pain is excruciating; I am preaching to the choir, so I shall stop. But, I am looking at this whole situation from a different place. I am a not a powerless victim of this illness, doctors, family or the public at large (such as Oprah's show). I am a person in chronic pain, who deserves and will find the best medical care available to me.
Any thoughts?
Hugs to all of you
hi - im new here but i have a story to add and i think here is a good place - i hope it makes sense- explanation first then letter to be sent
my doctor took 2 month summer holidays and left me a week short of my meds - i was confused and didnt figure it out until i had only 2 1/2 days left of meds and was going to have to make that last for 10 days ...ya right - i went through unfathomable pain stress tears etc.
his on call guy was not able to fill pain med scripts
no doctor is aloud to write a script here if your already being treated and so i went to emergency and the treatment i received there was unthinkable - i had my pharmacy, drs. receptionist and recent script bottles
they accused and belittled me the dr who treated me (like dirt) came in and said i wont be giving you and scripts today she didnt take history anything and told me she was going to tell my doctor that i was there as she was walking away and i replied - you think thats supposed to scare me - so i called when i got home and had time to think and the chief of (whatever - highest up in the hospital only cared until she found out it was not a malpractice suit and suggested i might have dropped my pills in the toilet and continued speaking down to me - what kind of fools do they take us for) they treated me so bad i wrote (have not sent yet) this when i was able to get my head around it :
by the way my cousin helped with grammar - she was so upset when she heard - and out of a large family(3 aunts and uncles both sides and my own family she is the only one to help or seem to care) and my son and husband
To the Doctors with whom I’ve spoken:
You don’t see because you don’t believe us, until you believe us -in your eyes fibromyalgia does not exist.
We know not of the ill people of our society as they are made to feel shame, unworthy, and of no use (survival of the fittest?) They stay home as they have nothing in common with society in general and stay away from the demoralization and banishment and segregation our society provides so eloquently for them. Because it hurts very much, one would be a fool to subject themselves to this ignorance especially when the stress exacerbates their illness, as in my case. I have only learned the true meaning of this prejudice when I became sick. As medical professionals you deal with the ill and chronically ill every day and my heart breaks for all who must feel your distrust and ignorance.
Slowly and painfully my life, dignity and soul have been stomped on, crushed until I have not the strength or desire to fight any more. For only the humane of human beings, and this includes the informed, compassionate medical professionals have given me hope that all who come to you will not pay the price I have had to for your lack of knowledge of fibromyalgia and all the incumbent ills that are associated with it..
On (date) I attended the emergency room in excruciating pain seeking a repeat(actually 5 days only needed) of an existing prescription that had run out due to my family physician being away on holiday. I met with Dr. ??? who treated me with as little dignity and compassion as she could muster. This illness is most difficult to live with and to be treated with condescension, treated as a hypochondriac, was humiliating to understate the situation.
I have since made calls to chief??? who was not interested in listening to me and the CEO ??? who was, which I greatly appreciate. My letter now is to try to bring a face to our much misunderstood disease and I ask that all medical professionals who come in contact with a fibromyalgia sufferer please stop and think for a moment about this insidious disease and what it has done to these formally happy-go-lucky, life loving people.
Thank you for your future patience and compassion.
my doctor took 2 month summer holidays and left me a week short of my meds - i was confused and didnt figure it out until i had only 2 1/2 days left of meds and was going to have to make that last for 10 days ...ya right - i went through unfathomable pain stress tears etc.
his on call guy was not able to fill pain med scripts
no doctor is aloud to write a script here if your already being treated and so i went to emergency and the treatment i received there was unthinkable - i had my pharmacy, drs. receptionist and recent script bottles
they accused and belittled me the dr who treated me (like dirt) came in and said i wont be giving you and scripts today she didnt take history anything and told me she was going to tell my doctor that i was there as she was walking away and i replied - you think thats supposed to scare me - so i called when i got home and had time to think and the chief of (whatever - highest up in the hospital only cared until she found out it was not a malpractice suit and suggested i might have dropped my pills in the toilet and continued speaking down to me - what kind of fools do they take us for) they treated me so bad i wrote (have not sent yet) this when i was able to get my head around it :
by the way my cousin helped with grammar - she was so upset when she heard - and out of a large family(3 aunts and uncles both sides and my own family she is the only one to help or seem to care) and my son and husband
To the Doctors with whom I’ve spoken:
You don’t see because you don’t believe us, until you believe us -in your eyes fibromyalgia does not exist.
We know not of the ill people of our society as they are made to feel shame, unworthy, and of no use (survival of the fittest?) They stay home as they have nothing in common with society in general and stay away from the demoralization and banishment and segregation our society provides so eloquently for them. Because it hurts very much, one would be a fool to subject themselves to this ignorance especially when the stress exacerbates their illness, as in my case. I have only learned the true meaning of this prejudice when I became sick. As medical professionals you deal with the ill and chronically ill every day and my heart breaks for all who must feel your distrust and ignorance.
Slowly and painfully my life, dignity and soul have been stomped on, crushed until I have not the strength or desire to fight any more. For only the humane of human beings, and this includes the informed, compassionate medical professionals have given me hope that all who come to you will not pay the price I have had to for your lack of knowledge of fibromyalgia and all the incumbent ills that are associated with it..
On (date) I attended the emergency room in excruciating pain seeking a repeat(actually 5 days only needed) of an existing prescription that had run out due to my family physician being away on holiday. I met with Dr. ??? who treated me with as little dignity and compassion as she could muster. This illness is most difficult to live with and to be treated with condescension, treated as a hypochondriac, was humiliating to understate the situation.
I have since made calls to chief??? who was not interested in listening to me and the CEO ??? who was, which I greatly appreciate. My letter now is to try to bring a face to our much misunderstood disease and I ask that all medical professionals who come in contact with a fibromyalgia sufferer please stop and think for a moment about this insidious disease and what it has done to these formally happy-go-lucky, life loving people.
Thank you for your future patience and compassion.
Ophra has done one show on CFS with the hellp of the CFids assocation of america that was good within the last two years. She had people on, describe their illness, and sympathized with them. I didn't see this other one.
Very good article!! Did you write it??
It took awhile for my family to fully understand. (They were never dismissive, it's just a hard one to get.) However, now when I lobby THEY write letters to their reps too and ask their friends too. We can get there!
Very good article!! Did you write it??
It took awhile for my family to fully understand. (They were never dismissive, it's just a hard one to get.) However, now when I lobby THEY write letters to their reps too and ask their friends too. We can get there!
God bless You ! wow that is so beautifully written, brought tears! I had thought about writing in to Dr Oz myself. You summed it all so perfectly! Thank you
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