Non-Mayo Providers Suggesting Patients Are Faking Illness

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.

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

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.

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

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?

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.