Our Stories of Stigma and Support from Providers and Others

[kauri]

Stories are the most powerful way to change atttitudes. We need your story of a time when a doctor, or someone in your life, reacted to your ME/CFS in a way that was either unsupportive or supportive. You may want to share the impact on you. Please try to keep your replies short, under 250 words if possible.

Each story will be an important contribution to our cause, thank you.

If you dont have a story you want to share, it will be very valuable if you could still respond to the poll, the results will go to the White House

 

[Dreambirdie]

Hi kauri--My story is a long one, with many bad experiences dealing with doctors and other health professionals. I will name names, and PM it to you when I get it together.

How many paragraphs (roughly) is 250 words...? I have no idea.

 

[kauri]

Hi kauri--My story is a long one, with many bad experiences dealing with doctors and other health professionals. I will name names, and PM it to you when I get it together.

How many paragraphs (roughly) is 250 words...? I have no idea.

Thank you so much. I understand many stories cannot be compressed into 2 or 3 paragraphs. Just do the best you can. And thank you again. These stories are incredibly valuable and it can be very hard for us to write.

 

[Enid]

I've voted kauri but I don't think our stories from the UK (situation grim) will help you at the White House.

 

[Dreambirdie]

Thank you so much. I understand many stories cannot be compressed into 2 or 3 paragraphs. Just do the best you can. And thank you again. These stories are incredibly valuable and it can be very hard for us to write.

I think I'm going to send you what I have already written in the past for others, though it is much longer than what you want. You can just choose the parts you feel are relevant.

Thanks for doing this.

 

[_June]

Hi kauri--My story is a long one, with many bad experiences dealing with doctors and other health professionals. I will name names, and PM it to you when I get it together.

How many paragraphs (roughly) is 250 words...? I have no idea.

What you wrote above is 43 words.

If you have Microsoft Word you can click Word Count in the Tools menu.
(Though I'm too lazy to open Word so I just googled "online word count" and copy-pasted your text )

 

[kauri]

I've voted kauri but I don't think our stories from the UK (situation grim) will help you at the White House.

Thank you for voting. I would appreciate your story. I am willing to gather UK stories and send an adapted packet to the UK official with the power to influence policy. It will include a letter, a suggested remedial curriculum for providers, an appropriately edited version of the article, the stories and the poll results. This illness doesn't recognize national borders, and the basic problem is so similar, it will not be difficult to adapt the petition to your system. I'm very happy to do it as soon as I have enough stories. I would need 20-30 suitable ones for the U.K.

 

[kauri]

I think I'm going to send you what I have already written in the past for others, though it is much longer than what you want. You can just choose the parts you feel are relevant.

Thanks for doing this.

Thank you! Private Messaging me with stories is fine and I'm happy to edit.

 

[dannybex]

I think it's kind of difficult for doctors to educate families, etc., when for the most part they have no clue about a minority of the factors/biomarkers/abnormalities that we've known about for years.

Having said that, I've found that my doctor is willing to listen (as rushed as she is) if I can provide a study from Pubmed that backs up what I'm saying. But she's still in no position overall to educate anyone regarding ME/CFS/CFIDS...etc.

 

[*GG*]

I think it's kind of difficult for doctors to educate families, etc., when for the most part they have no clue about a minority of the factors/biomarkers/abnormalities that we've known about for years.

Having said that, I've found that my doctor is willing to listen (as rushed as she is) if I can provide a study from Pubmed that backs up what I'm saying. But she's still in no position overall to educate anyone regarding ME/CFS/CFIDS...etc.

I like the effort, but agree with DannyB here. I live alone and do not have much face to face contact with family (holidays and special occasions, I use my weekends to recharge the batteries), mostly online and via the phone. A good handout would probably be good, but you need to cover the spectrum, I still work part time, so I can have my good insurance, therefore people would think I am doing well. But I do not have much of a life, I rest a lot to help keep my job and benefits.

GG

 

[kauri]

I think it's kind of difficult for doctors to educate families, etc., when for the most part they have no clue about a minority of the factors/biomarkers/abnormalities that we've known about for years.

Having said that, I've found that my doctor is willing to listen (as rushed as she is) if I can provide a study from Pubmed that backs up what I'm saying. But she's still in no position overall to educate anyone regarding ME/CFS/CFIDS...etc.

Thanks for reminding me to clarify. We're proposing doctors also have remedial education. Of course you're right. We know so much more about our illness than our doctors, almost always.And they need to respect that. That's a subject for another article.
I do exactly what you do, give my doctor Pubmed Abstracts. I think what the doctor CAN do is provide the authoritative voice to those people who have families, employers, carers etc. who don't understand or are skeptical, that it is a very serious illness, that it is hard to understand. They can answer the families' questions. I mean, they could if they were properly educated and instructed.

Their silence is speaking loudly in our society.

 

[kauri]

I like the effort, but agree with DannyB here. I live alone and do not have much face to face contact with family (holidays and special occasions, I use my weekends to recharge the batteries), mostly online and via the phone. A good handout would probably be good, but you need to cover the spectrum, I still work part time, so I can have my good insurance, therefore people would think I am doing well. But I do not have much of a life, I rest a lot to help keep my job and benefits.

GG

Yes, my family situation is the same. All at a distance. It wouldnt work for us. It sounds as if you have very little free (functional) time that you can spend how you like. "A good handout" is a really good idea. I'll give it thought.
Thanks for your suggestion. Did you want to say any more about what you mean by "the full spectrum"?

 

[*GG*]

Yes, my family situation is the same. All at a distance. It wouldnt work for us. It sounds as if you have very little free (functional) time that you can spend how you like. "A good handout" is a really good idea. I'll give it thought.

Thanks for your suggestion. Did you want to say any more about what you mean by "the full spectrum"?

All I meant by full spectrum was how some people can still work to the bedbound!

GG

 

[kauri]

All I meant by full spectrum was how some people can still work to the bedbound!

GG

Oh yes. That's important to include. Thanks If you have more suggestions, they'd be appreciated.

 

[Mij]

My local support group at the time (20 years ago) made up educational pamphlets and provided them to heath care providers to put in their waiting rooms. This must have been a huge help because when I've called clinics over the years they are aware that it exists.

My family doctor who only sees me once a year is "in the know" on recent updates of ME. She was even aware of XMRV at the time it was on the front page. I was shocked she even heard of it.

My opinion is that "personal stories" are not that helpful when the majority have no clue what ME is.

 

[kauri]

My local support group at the time (20 years ago) made up educational pamphlets and provided them to heath care providers to put in their waiting rooms. This must have been a huge help because when I've called clinics over the years they are aware that it exists.

My family doctor who only sees me once a year is "in the know" on recent updates of ME. She was even aware of XMRV at the time it was on the front page. I was shocked she even heard of it.

My opinion is that "personal stories" are not that helpful when the majority have no clue what ME is.

It's so good to hear your doctor is doing that. Statistically, she is in a small minority. At the moment I am focussed on an effort to bring pressure on the leaders of the medical establishment, to require more doctors to act like yours, who sounds exceptional.

The stories were originally for President Obama's White House specifically. Obama was an activist orgnaizer in Chicago and there is a school of activism there that became famous through their success in the sixties civil rights movement. They found then, and they teach now, the power of stories to move people. I was trained at the same school and know they work. If I cannot get stories, I will need some other way to show that I am not just speaking for myself. The poll above is very telling and will strenghten the case.

A group of leading ME/CFS doctors such as Kenny DeMeirleir and Nancy Klimas and Daniel Peterson got together and wrote the Canadian consensus Guidelines for diagnosing and treating ME/CFS, and the first two rules of treatment are:

1) Patient Support and Well'being Are the Top Priorities

2) Initiate education of the patient, their family and support network.

In the present climate, that sounds ridiculous, because as was pointed out, doctors generally are in no position to educate anyone on his illness. They aren't even educated on it them selves. This is what I'm aiming to get changed.

I also think they need to be persuaded to diagnose us! Even the CDC estimated that 80% of us are not even getting diagnosed!

So, many thanks to all who've taken the poll, the more who do, the stronger the point.

 

[Sparrow]

I have had doctors ignore severe symptoms that eventually turned out to be caused by raging systemic bacterial infection, because of my ME/CFS diagnosis. I truly feel like I will be lost if any additional health problems begin to manifest in me (heart disease, cancer, appendicitis, etc.) because even the most extreme symptoms are now brushed off without investigation. We are not treated with the same level of care that would be given without this diagnosis.

When I was at my lowest, literally unable to roll myself over no matter how hard I tried, I had a doctor be completely dismissive and tell me I just needed antidepressants. He said he deals only with "medical things," which apparently didn't include what was wrong with me.

I had a doctor tell me that if I had children, then I would be well by now because I'd be motivated.

I had a doctor tell me that it must be nice to "have a break" by being profoundly ill, and imply that I had brought this on myself to have a rest. At the time, living with this illness was daily torture.

These experiences have been profoundly demoralizing, and make living with a terrible illness so much worse. They have also made me very wary of doctors in general. I will not be seeing doctors if I have new and acute symptoms. There will be no early diagnosis of other health conditions for me. They have taught me that no one will listen.

 

[Xandoff]

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

 

[overtrain]

What's your deadline for the 250? Thanks

 

[kauri]

I have had doctors ignore severe symptoms that eventually turned out to be caused by raging systemic bacterial infection, because of my ME/CFS diagnosis. I truly feel like I will be lost if any additional health problems begin to manifest in me (heart disease, cancer, appendicitis, etc.) because even the most extreme symptoms are now brushed off without investigation. We are not treated with the same level of care that would be given without this diagnosis.

When I was at my lowest, literally unable to roll myself over no matter how hard I tried, I had a doctor be completely dismissive and tell me I just needed antidepressants. He said he deals only with "medical things," which apparently didn't include what was wrong with me.

I had a doctor tell me that if I had children, then I would be well by now because I'd be motivated.

I had a doctor tell me that it must be nice to "have a break" by being profoundly ill, and imply that I had brought this on myself to have a rest. At the time, living with this illness was daily torture.

These experiences have been profoundly demoralizing, and make living with a terrible illness so much worse. They have also made me very wary of doctors in general. I will not be seeing doctors if I have new and acute symptoms. There will be no early diagnosis of other health conditions for me. They have taught me that no one will listen.

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.