Our Stories of Stigma and Support from Providers and Others

[kauri]

I believe I have PTSD from dealing with medical community. They are bullies. In my experience pamphlets, letters & articles just enrage them. We need clout at the Government level. We need it known that this is a chronic disabling illness and that Doctors must be willing to help us. IMHO

This is exactly why I am doing this. The government gives doctors power over us and requires us to get their signature to receive medical benefits, so they have the responsibility to hold the doctors accountable for their treatment of us.

 

[Mouse girl]

I can't answer this question as I haven't had anyone that interested to go to a doc with me. I'm sure if I had had someone that interested in me or my life, my doc would have been awesome though.

But, I have had the most amazing doc who has been so supportive and helpful to his patients. Frankly, don't know how he has done it, working with all these patients that he can't really do all that much for since there is so little money going into real research. He is leaving though, so I am thoroughly and totally sad about that. I had another doc who was good with CFS and fibro but he was sooo difficult to deal with and crazy expensive. Wish they made it easier for docs to see patients without money in America, but that's our system.

 

[MeSci]

Thank you so much for sharing this, it is a valuable, expressive and succinctly written testament. The treatment you have and are experiencing is horrific and I am so sorry that you have had to endure this.
You have raised a very important point that had been missed. The very real danger we get placed in because doctors are so ignorant and noncurious about ME/CFS, they do not know whether our symptoms are independent of it. It seems, as far as they are concerned, if you have ME/CFS, then any new symptom you have must be caused by it and therefore doesnt need checking. My son drew a cartoon of a doctor's office. The doctor has been looking at the patient's file and when s/he looks up at the patient, the doctor is wearing blinkers that have the letters ME/CFS as the only slots through which the doctor can see.

Thanks again for sharing.

I have the opposite problem in that doctors look for other causes of symptoms that I later realise are actually due to the ME!

Having been ill for nearly 20 years I have enough material to write a book, but have condensed a few negative and positive experiences into 250 words which I will send you.

 

[kauri]

I have the opposite problem in that doctors look for other causes of symptoms that I later realise are actually due to the ME!

Having been ill for nearly 20 years I have enough material to write a book, but have condensed a few negative and positive experiences into 250 words which I will send you.

Thanks so much for taking the time to do this. I have read your stories and they are very moving, and so well boiled down, which makes them really hit home. You really understand that "less is more". What comes across is someone refusing to give up in the face of a prolonged and callous absence of support. We have so many unsung heroes amongst us and you are without doubt one of them. By using your skillful voice, you are giving voice to the too-many who cannot. Your stories are about to begin a journey, where they will help to change this inhumane situation. Thank you! Thank you!

 

[MeSci]

Thanks so much for taking the time to do this. I have read your stories and they are very moving, and so well boiled down, which makes them really hit home. You really understand that "less is more". What comes across is someone refusing to give up in the face of a prolonged and callous absence of support. We have so many unsung heroes amongst us and you are without doubt one of them. By using your skillful voice, you are giving voice to the too-many who cannot. Your stories are about to begin a journey, where they will help to change this inhumane situation. Thank you! Thank you!

{blush}

One just does what one must to stay alive and (relatively) sane.

 

[kauri]

It's exciting to see the polls numbers rising. If we could get 40 respondants, it would be a strong addition to the petition for better understanding among providers.

A little explanation of the poll might help. The petition is for the AMA to be held responsible for properly educating physicians and other providers.

The Canadian Consensus Guidelines for Diagnosis and Treatment are recognised as the "gold standard".
The first two steps in patient care, according to the guidelines, are :
1) "Patient Support and Well-Being Are the Top Priorities"........
2) "Patient Education: Initiate education of the patient, their family and support network members...."

I believe if they are held to this, since a person never understands anything better than when they are required to teach it to others, it will be a strong lever for us.
The poll shows clearly that this is not being done. Its hard proof, if we can increase the participants by a dozen more people.
We're approaching financial decision-makers. Numbers draw great shorthand pictures which they can use to persuade one another. If we can say over 95% out of 40 respondants report no doctor education of family and support, this is proof the guidelines are not being followed.
So, if you havent already taken it, it will be great if you do, and if you have, do you know of anyone else who might?
Thanks everyone, things are going to get better for us. We have the strength of numbers and growing political know-how.

 

[Sasha]

It's exciting to see the polls numbers rising. If we could get 40 respondants, it would be a strong addition to the petition for better understanding among providers.

Hi kauri - I haven't been following this thread and just read your last post. I hadn't realised this thread was about a poll. If you want to maximise response, it might be a good idea to rename it something like, 'Do this poll on education of your support network: results going to the White House'.

If you like the idea (or maybe have a better title in mind), hit the 'report' link on my post (just to the right of the time it was posted) - a message box will pop up and you can explain there to a moderator that you'd like your title thread changed.

 

[Insomniac]

I sent you mine. But then I wondered if it is it worth sending our stories if we are outside the US?
Please tell us if this is US patients only.

 

[kauri]

I sent you mine. But then I wondered if it is it worth sending our stories if we are outside the US?
Please tell us if this is US patients only.

Your story sadly demonstrates behaviour that is outrageous but not uncommon, and that is why it is so wonderful that you have been able to speak up in such a clear and obviously sane voice. It will definitely be included with the petition packet I am preparing. The stories will be grouped under country locations, and several packets will be sent both to UK health decision makers and to the White House. All of the stories will be sent to all recipients, because the problem is identical...lack of leadership resulting in doctors gone rogue and causing untold harm. At least your story is not untold and will give voice to the many who have also barely escaped with their lives from such "care".
Thank you again for taking the time to help out. I will be thinking of you and hoping things take many better turns for you.

 

[kauri]

Hi kauri - I haven't been following this thread and just read your last post. I hadn't realised this thread was about a poll. If you want to maximise response, it might be a good idea to rename it something like, 'Do this poll on education of your support network: results going to the White House'.

If you like the idea (or maybe have a better title in mind), hit the 'report' link on my post (just to the right of the time it was posted) - a message box will pop up and you can explain there to a moderator that you'd like your title thread changed.

I so much appreciate your suggestions. What happened was this. Originally, my concern was with gathering stories and the poll was an afterthought. Gathering the stories is still a priority and they are slowly coming, each one a treasure (a tragic treasure, a bit like the AIDS quilt).
I slowly realized how powerfully the poll results are speaking as direct quantifiable proof of our neglect. To outsiders they speak very clearly..."the best ME/CFS doctors took the trouble to recommend these guidelines a decade ago, and still this is how things are ...."
So now, as you say, the title is not highlighting the poll. I'm not sure whether it would be best to separate them, but I dont want to remove the "stories" title, as they are so important to the effort. I'll give it some thought.
Thanks so much for your help and interest...if you have ay further suggestions, I'd much appreciate them.

 

[Sasha]

I so much appreciate your suggestions. What happened was this. Originally, my concern was with gathering stories and the poll was an afterthought. Gathering the stories is still a priority and they are slowly coming, each one a treasure (a tragic treasure, a bit like the AIDS quilt).
I slowly realized how powerfully the poll results are speaking as direct quantifiable proof of our neglect. To outsiders they speak very clearly..."the best ME/CFS doctors took the trouble to recommend these guidelines a decade ago, and still this is how things are ...."
So now, as you say, the title is not highlighting the poll. I'm not sure whether it would be best to separate them, but I dont want to remove the "stories" title, as they are so important to the effort. I'll give it some thought.
Thanks so much for your help and interest...if you have ay further suggestions, I'd much appreciate them.

Oh, I see - that's a good point.

I think you maybe need two threads - one for the poll (with the new title), one for the stories. Actually, for the one for the stories, you might want to call it something like, 'Contribute your story of stigma and support from providers and others'. Totally up to you, but if I want people to take an action, I always try to say so in the thread title so that I can have a bit more confidence that anyone up for taking part has realised that there's something for them to do. And you could mention the other thread in the first post of the other one, with a link so that people can easily find both.

Anyway, just an idea again.

 

[kauri]

Oh, I see - that's a good point.

I think you maybe need two threads - one for the poll (with the new title), one for the stories. Actually, for the one for the stories, you might want to call it something like, 'Contribute your story of stigma and support from providers and others'. Totally up to you, but if I want people to take an action, I always try to say so in the thread title so that I can have a bit more confidence that anyone up for taking part has realised that there's something for them to do. And you could mention the other thread in the first post of the other one, with a link so that people can easily find both.

Anyway, just an idea again.

I like both your ideas, separating them and altering the "Stories" title. I'm fading now so have to postpone, but will follow your good ideas. Hopefully tomorrow. Thanks Sasha.

 

[elbosque]

I am from Canada. Being sick over 3 years with diagnosed ME/CFS, I can tell you that not only do most health professionals not know anything about ME/CFS, many refuse to believe that it even exists. I have one doctor who specializes in treating ME/CFS & FM. I am luck I live relatively near by. I can tell you my sleep/respiratory specialist does not believe there is ME/CFS. His response to my sleep lab results of not getting into deep sleep even when they pumped up the pressure was to order the sleep tech to increase the pressure on my CPAP machine. Not sure why. The sleep lab tech had increased the pressure and i didn't get into deep sleep. After a month she adjusted it back because it actually caused me to get less sleep. My APNEA was already well under control. It was essentially the same with the ENT specialist. He said I needed more exercise and to loose some weight. In seeing him 3 times, he never once recognized that ME/CFS existed or might be the cause of my sinus problems. I don't have sinus infections. My ME/CFS specialist clearly told him in the referral that I have ME/CFS. The next group are medical therapists. For the most part they don't even have a clue about ME/CFS. The best people I found were the kinesiologists who worked with me before I was diagnosed. They worked under the direction of occupational therapists but I found them quite different from any category of therapist. Perhaps it was because they did a lot of work with people who suffered brain injuries they were more sensitive to the fact that I did not look all the sick. We finally have a clinic here in BC which is going to specialize in treating people with little known chronic illnesses such as ME/CFS. It will not solve our problems but is an important stone in the foundation to get it better known amongst health care professionals.

 

[vli]

But, I have had the most amazing doc who has been so supportive and helpful to his patients. Frankly, don't know how he has done it, working with all these patients that he can't really do all that much for since there is so little money going into real research. He is leaving though, so I am thoroughly and totally sad about that. I had another doc who was good with CFS and fibro but he was sooo difficult to deal with and crazy expensive. Wish they made it easier for docs to see patients without money in America, but that's our system.

Could you possibly tell us WHO these doctors are or is that confidential?

 

[kauri]

I am from Canada. Being sick over 3 years with diagnosed ME/CFS, I can tell you that not only do most health professionals not know anything about ME/CFS, many refuse to believe that it even exists. I have one doctor who specializes in treating ME/CFS & FM. I am luck I live relatively near by. I can tell you my sleep/respiratory specialist does not believe there is ME/CFS. His response to my sleep lab results of not getting into deep sleep even when they pumped up the pressure was to order the sleep tech to increase the pressure on my CPAP machine. Not sure why. The sleep lab tech had increased the pressure and i didn't get into deep sleep. After a month she adjusted it back because it actually caused me to get less sleep. My APNEA was already well under control. It was essentially the same with the ENT specialist. He said I needed more exercise and to loose some weight. In seeing him 3 times, he never once recognized that ME/CFS existed or might be the cause of my sinus problems. I don't have sinus infections. My ME/CFS specialist clearly told him in the referral that I have ME/CFS. The next group are medical therapists. For the most part they don't even have a clue about ME/CFS. The best people I found were the kinesiologists who worked with me before I was diagnosed. They worked under the direction of occupational therapists but I found them quite different from any category of therapist. Perhaps it was because they did a lot of work with people who suffered brain injuries they were more sensitive to the fact that I did not look all the sick. We finally have a clinic here in BC which is going to specialize in treating people with little known chronic illnesses such as ME/CFS. It will not solve our problems but is an important stone in the foundation to get it better known amongst health care professionals.

Thank you for describing your experiences so clearly. This is a major problem in the U.S. as well. The excuse for dumping ME/CFS with primary care, rather than assigning specialists, has been, "Well since you have a multi-systemic illness, the primary care physician can be the gate-keeper and send you to the right specialist." Well, as most of us know too well, the primary care physician does not have the necessary skills to do that, and even in a case like yours, where your primary care physician is more knowledgeable and cooperative, the specialists are completely unprepared. When I was 9 years old we played a game called "Ignore it and it might go away". I think some specialists indulge in similar magical thinking. They rigidly adhere to the familiar, and push aside what doesnt fit.
When the CDC said that AIDS needed specialty treatment because of its complexity, it exposed the falsity of the idea that pwME/CFS can make do with regular unspecialized care. Our knowledge of this illness is growing in leaps and bounds. It's time they started catchng up. We need specialists. But that's not enough. It will take a long time to get enough specialists and in the mean time only a few will benefit. There is no reason why all practicing health professionals should not be required to take an intensive remedial seminar so that the rudimentary ignorance is addressed that causes so much additional suffering and harm.
Stories of experiences like yours paint the picture and bring it to life, make it real, for decision makers to grasp. Thank you again for taking the time to share, and add your story to the travelling collection.

 

[SilverbladeTE]

"You just need to reduce your calorie intake...there were no fat folk in Belsen!"
that GP thought that was funny.
I did not. Couldn't believe anyone could say such a thing.

Relative of mine was in unit that liberated that camp, he suffered horrors from that all his life
there was an obese inmate, she was a recently arrived *doctor* they kept fed so she could treat people.

One of many incidents I've had/seen with doctors over the years, not merely ME/CFS patients get abuse or suffer petty arrogance, contempt, incompetance or smug and grossly wrong "beliefs" pretending to be science and the art of healing.

 

[kauri]

"You just need to reduce your calorie intake...there were no fat folk in Belsen!"
that GP thought that was funny.
I did not. Couldn't believe anyone could say such a thing.

Relative of mine was in unit that liberated that camp, he suffered horrors from that all his life
there was an obese inmate, she was a recently arrived *doctor* they kept fed so she could treat people.

One of many incidents I've had/seen with doctors over the years, not merely ME/CFS patients get abuse or suffer petty arrogance, contempt, incompetance or smug and grossly wrong "beliefs" pretending to be science and the art of healing.

I'd say that doctor had a pathological lack of empathy. Not only that but ignorant. We now know that viruses are implicated in over 60% of obesity. You are sadly right that not only ME/CFS patients are abused by doctors. Unfortunately, a self-regulated culture with very real power to wield, attracts people for whom that prospect is appealing. Within the physician subculture, there is a tendency for permission to be rude, aggressive, and abusive (either openly or indirectly) to be fostered.
I'm very sorry you have had to endure all that.