Non-Mayo Providers Suggesting Patients Are Faking Illness

Posted by Elizabeth @enska, Nov 23, 2019

Hi! I am posting this topic to see what other Mayo patients think of this issue. Recently on Twitter there was a viral video that showed a nurse dancing along to the "beat" of a patient's heavy breathing, and the caption said "We know you're faking." Many, many people responded with stories about how they as patients were not believed and thus were not diagnosed correctly and went on to be very ill. Some even had people close to them that did die. It started a lot of conversation about not being believed. Along with that was discussion of fatphobia, drug-seeking behavior, homelessness, BIPOC issues, women's issues, and more.

I grew up in Rochester but lived in other cities for about 15 years before I came back here. I do primary care at a Mayo primary care clinic but I was elsewhere for the 16 years. Thinking of the issues I brought up above, I realized I have never experienced any of that at Mayo.

I went to the ER at St. Marys several months ago because I thought I was having a heart attack. It was a panic attack, so my blood work and other tests were all normal. I could see them easily dismissing me and thinking I was faking, but everyone was compassionate and treated me with respect, even in the waiting room where I started crying because I was so worried. They said, "you're in the right place!" I was in the ER 2 other times this year (it's been eventful) and I've made heavy use of Mayo's resources due to my illnesses and all the people I've worked with have been excellent. I experienced zero of the issues I've been reading about on Twitter, but in the other cities I did receive questionable treatment. Even calling on the phone to Mayo to discuss an insurance question was painless.

I'm curious to know what others' experience is. Have you struggled at Mayo to receive proper treatment? Have you noticed better care at Mayo? I just keep going back to that it's the #1 hospital in America for good reason.

The biggest difference for me has been my PCP. I have been very noncompliant for many years and the turning point for me came earlier this year. I had 4 goals I was supposed to meet, and I met zero of them. Instead of getting mad at me, she said, "That's ok, we're here to help figure out why that happened." We did and I've now been compliant for about 3 months. She gave me a hug last time I saw her because of the good results!

I have a daughter that has been sick for the past 10 years. It started in her teens and now at 26 she still struggles. She has been from doctor to doctor and has had tests run over and over but only for basic illnesses and disorders. Obviously she has something going on that is not easy to diagnose or common. She had a surgery at 17 and a GI doctor she recently saw told her that her "so called surgery" would have left more scars. He didn't believe she had surgery, as if she would make that up! It is in her records which he never bothered to read. She had other GI doctors try to prescribe her anti depressants. She is not depressed, she is sick! One GI I saw with her at 16 told me I needed to get my head out of the sand because my daughter has body image issues and is not physically sick, she is making herself sick. Not the case at all! Part of her illness is she is unable to gain weight and keep it on. So yes, we have seen plenty of doctors who don't believe she is ill and brush her off. Meanwhile she goes without a diagnosis and continues to deteriorate. Last week she needed to go to the ER, she lives in AZ, and decided to try Mayo's ER. Her insurance won't cover Mayo, but she went anyways. She could not believe the compassion and kindness they treated her with. While they could not diagnose her right then and there, they did rule out a problem her regular doctor thought she may have. They told her to come back if needed and a nurse told her to fill out forms for financial assistance so she could be seen there. Right now she is barely able to hold a part time job due to the pain and inflammation she gets during what we call "flare ups". My daughter has filled out paperwork and hopefully she can at the very least be diagnosed there. That is what she needs above all. It is hard to manage something when you don't know exactly what is wrong. Over the years not one doctor has gone beyond the basics. It is too bad that when you really need the kind of experts the Mayo clinic provides, your insurance company can deny you that type of care.

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Years ago I had a compassionate primary doctor. He did everything right. Then he left to head up the Ebola crisis in Liberia, and I was thrown to the wolves. In my recent move, I was lucky enough to come under the care of a Mayo-trained oncologist, who relocated to Oregon. He brought the values instilled in him, with him, and shares it in his practice. Due to numerous maladies, I have seen my fair share of different doctors, and specialists. The dismissive attitude that many portray is such a disservice.
Ginger

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In the past year I was in the St. Marys Hosital three times for atrial fibrillation. Each time I received quick, compassionate care. Thanks to the doctors that listened to me, I would up having open heart surgery. Now I have a pig valve in my heart. My husband is a retired Mayo Clinic physician and, while this influences my opinion, my experience tells me that Mayo Clinic health care is compassionate care.

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I guess I have been very fortunate. I have never been treated as if I was faking something. I do have to say that I do not consider many of the doctors here to be very good but they have always been respectful. On the other hand, when I was hospitalized with HE episodes the nurses were for the most part really horrible.
I have been in Mass General 4 times I think — 2 times before my transplant, for my transplant, and one time after when I had Legionnaire's disease. MGH is what is called a "Magnet Hospital" meaning that the nursing care there is excellent and it really was. What a difference from most of the nurses up here. All three Mayos are also Magnet Hospitals.
JK

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@ghennel

I have a daughter that has been sick for the past 10 years. It started in her teens and now at 26 she still struggles. She has been from doctor to doctor and has had tests run over and over but only for basic illnesses and disorders. Obviously she has something going on that is not easy to diagnose or common. She had a surgery at 17 and a GI doctor she recently saw told her that her "so called surgery" would have left more scars. He didn't believe she had surgery, as if she would make that up! It is in her records which he never bothered to read. She had other GI doctors try to prescribe her anti depressants. She is not depressed, she is sick! One GI I saw with her at 16 told me I needed to get my head out of the sand because my daughter has body image issues and is not physically sick, she is making herself sick. Not the case at all! Part of her illness is she is unable to gain weight and keep it on. So yes, we have seen plenty of doctors who don't believe she is ill and brush her off. Meanwhile she goes without a diagnosis and continues to deteriorate. Last week she needed to go to the ER, she lives in AZ, and decided to try Mayo's ER. Her insurance won't cover Mayo, but she went anyways. She could not believe the compassion and kindness they treated her with. While they could not diagnose her right then and there, they did rule out a problem her regular doctor thought she may have. They told her to come back if needed and a nurse told her to fill out forms for financial assistance so she could be seen there. Right now she is barely able to hold a part time job due to the pain and inflammation she gets during what we call "flare ups". My daughter has filled out paperwork and hopefully she can at the very least be diagnosed there. That is what she needs above all. It is hard to manage something when you don't know exactly what is wrong. Over the years not one doctor has gone beyond the basics. It is too bad that when you really need the kind of experts the Mayo clinic provides, your insurance company can deny you that type of care.

Jump to this post

Hello @ghennel,

I just read your post about your daughter's illness. I'm so sorry she has been so ill and without a good medical diagnosis. It is wonderful, however, that she found some compassionate help at a Mayo facility. I hope she is able to get into see someone at Mayo soon.

I and many others on Mayo Connect have had hard-to-diagnose health issues and know that it takes persistence to find the right doctor who is willing to look for answers.

I look forward to hearing how your daughter is doing. Will you post again?

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@hopeful33250

Hello @ghennel,

I just read your post about your daughter's illness. I'm so sorry she has been so ill and without a good medical diagnosis. It is wonderful, however, that she found some compassionate help at a Mayo facility. I hope she is able to get into see someone at Mayo soon.

I and many others on Mayo Connect have had hard-to-diagnose health issues and know that it takes persistence to find the right doctor who is willing to look for answers.

I look forward to hearing how your daughter is doing. Will you post again?

Jump to this post

Thank you for your kind words. It has been a long road with my daughter. She filled out paperwork for financial assistance and handed it in. We are waiting to see what happens. She had been in the middle of a pretty bad flare-up most of last month. Right now she seems to be leveling out and holding her own. I definitely will post again.

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