Powerful NY Times Op Ed on the Disenfranchisement Experienced by ME/CFS and Other Patients

[Cort]

A powerful op ed appeared in the New York Times on the disenfranchisement experienced by the chronically ill; particularly those with chronic illness. At one time this person was diagnosed with ME/CFS.

I went from doctor to doctor looking for answers, but overnight I had gone from being a trusted rabbi and chaplain (who works with seriously ill and dying people on hospital medical teams) to a “hysterical” chronically ill person. Though I had seen it happen to my clients, I now understood firsthand that being disbelieved is nearly universal for people with chronic illnesses, especially those that are largely invisible or hard to diagnose or both. I had believed that as a health care professional, equipped with skills and advocates to navigate the system, I would be treated differently. I soon learned how hubristic that was.​

https://mobile.nytimes.com/2018/01/...eper-meaning.html?_r=0&referer=&smid=tw-share​

 

[Not dead yet!]

This part really goes to the heart of the problem, imo:

[article]Eventually, because of the tireless advocacy of my wife, I was diagnosed with central nervous system lupus (an autoimmune disease that attacks the brain and central nervous system), as well as fibromyalgia, chronic fatigue syndrome and complex migraines. My lupus diagnosis would later be taken away and then given back countless times as suited the needs of health insurance and disability insurance companies to sort and manage me and decide how much care I was entitled to. The needs of my body were virtually irrelevant in this process as my diagnosis become a monetized affair where I had to jump through increasingly difficult hoops to “prove” it.[/article]

 

[Cort]

This part really goes to the heart of the problem, imo:

[article]Eventually, because of the tireless advocacy of my wife, I was diagnosed with central nervous system lupus (an autoimmune disease that attacks the brain and central nervous system), as well as fibromyalgia, chronic fatigue syndrome and complex migraines. My lupus diagnosis would later be taken away and then given back countless times as suited the needs of health insurance and disability insurance companies to sort and manage me and decide how much care I was entitled to. The needs of my body were virtually irrelevant in this process as my diagnosis become a monetized affair where I had to jump through increasingly difficult hoops to “prove” it.[/article]

Ouch....it's really amazing how little a hold the medical profession has of so many problems. There's still so much grey . My question is how much work is going to resolve these diagnostic difficulties?

 

[Farmgirl]

I am hoping for some soul searching in the medical community, and soon. I have been ill for a super long time and the suffering has just gotten worse and worse as the years fly by with no treatment, until now, when it is almost too late. Although i am thankful for the help I am getting now, the 3+ hours drive to the new MD every 6-12 weeks are hard on me. We have paid into insurance a lot of money all these years. I am thankful for all the good help on the Internet! I might still be in the dark otherwise.

Sorry to hear of other people's bad experiences with medical professionals they thought they could trust. I think maybe there are at least a few of us with similar uncomfortable interactions. From personal experience, it just solidifies a doubting doctor's hunch that you are on the edge mentally when you start bawling in front of them when they tell you "you are just depressed".

As a member of the medical community, we must remember that we, the patients, are paying the medical personal for a service rendered.

Thanks for all you do, Cort.

 

[Cort]

Th

I am hoping for some soul searching in the medical community, and soon. I have been ill for a super long time and the suffering has just gotten worse and worse as the years fly by with no treatment, until now, when it is almost too late. Although i am thankful for the help I am getting now, the 3+ hours drive to the new MD every 6-12 weeks are hard on me. We have paid into insurance a lot of money all these years. I am thankful for all the good help on the Internet! I might still be in the dark otherwise.

Sorry to hear of other people's bad experiences with medical professionals they thought they could trust. I think maybe there are at least a few of us with similar uncomfortable interactions. From personal experience, it just solidifies a doubting doctor's hunch that you are on the edge mentally when you start bawling in front of them when they tell you "you are just depressed".

As a member of the medical community, we must remember that we, the patients, are paying the medical personal for a service rendered.

Thanks for all you do, Cort.

Thanks Farmgirl. I think we are slowly but steadily making progress.

 

[Merry]

I am hoping for some soul searching in the medical community, and soon.

I'm with you, @Farmgirl. James Coyne reports:

Two sobbing, ashamed physicians

I spoke at a showing of Unrest at Amsterdam Medical Centre in October. . . .

After the showing, I was leaving to meet friends for dinner. I stopped when I encountered two stylish women still sitting in their seats in the emptying auditorium, sobbing as if one of them had just received a diagnosis of cancer. I said “Excuse me, can I help?” One woman started to talk, but the other had to finish for her.
​

“My sister and I are both physicians. We just learned tonight how much harm we had been doing to our patients. We were only trying to do what was best for them, but we refused to listen to them. We feel very badly.”​

More doctors in tears, please.

 

[Farmgirl]

Wow.