The Scary Trend I See in Our Healthcare System


I am a part of a few online support groups for some of my conditions and I have begun seeing a trend in our healthcare system. It down right scares me. The way patients with hard to diagnose or rare illnesses are being treated is appalling.

I have hypermobile Ehlers-Danlos syndrome (hEDS) and Chiari malformation. Even though I have been diagnosed by a knowledgeable medical doctor, I am still getting doubted wherever I go. I feel like because there is not a lot of knowledge or updated information on these illnesses, doctors are doing and saying things that can be hurtful, harmful and rude. Situations like these can be harmful to the mental health of these patients or deter them from seeking emergency care.

When I was young I watched my mother get told for years that it was “all in her head.”  I know better now, I just wish she was around long enough to experience that justification of a proper diagnosis. During this whole process of trying to figure out why I was so ill, I saw so many doctors. For over 10 years I was sent to different specialists and had tests run. When most came back normal, I started to doubt myself.

Somewhere along the line I have developed medical anxiety and medical post traumatic stress disorder (PTSD). When I go to a new doctor, I start sweating and my heart races. It takes every ounce of restraint not to get up and leave. Some of the things that doctors have said to me are almost laughable if we were not talking about my health and well-being. I should not fear going to the doctor. I should not be scared of what they are going to say or put in my chart. I once had a rheumatologist (who never even touched me or run labs) tell both my referring doctors that there was nothing wrong with me, I was just depressed.

Then he said that the lab work I had done with my primary care were false negatives. Two months later I was diagnosed with hEDS and Chiari malformation. I am still working to get my medical record amended. I have read so many threads on my support groups about things like this happening. Most patients will not even go to the emergency room at all, and I have gotten to that point myself.

I have been treated like a drug seeker when I have gone in for migraines. I have been treated like I have a psychiatric issue when I go in for chest pains. I also have basically been accused of lying about my condition due to the above doctor’s note in my chart. Then this ER doctor recommended a test that is not even a real thing for my condition. I am just appalled that I know more about my condition than the medical professionals that are trained for it.

When I find a good and kind doctor who is knowledgeable about my conditions I hold on to them. I actually do have a few.  Those are the ones that I deal with on a regular basis. When I meet a new doctor I never know what is going to happen or how I will be treated. Which is why when something like this happens now, I report it to the patient advocate. I have decided to take a stand for my own health. I have decided that I am going to say that this is not OK!

Recently a local hospital did a CT of my head and told me it was clear. Then, a few weeks later, I had an MRI that showed a tumor in my head. When I went back to look at my results, it was there, it just was not relayed to me. Guess what? Patient advocate got a call. I was contacted the next day by a hospital administrator who was a doctor himself. I was actually quite impressed with his concern and care in this situation.

This is obviously a problem that is becoming more common. I really wish there was some way to fix it. I am interested in your experiences with this problem. It is well within your right to contact patient advocates if you feel like you have been treated poorly or received substandard care. I also want to finish with this, not all doctors are like this.  Most got into this field to help people and to heal. I am not lumping them all in this category of complacency. However, I needed to talk about this. It needs to be discussed and brought out into the light.

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