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When Doctors Claim You’re Lying About Having a Medical Disorder

I want to share my experiences with an audience who can help improve patient care and prevent others from experiencing the frustration I have experienced. But I don’t know who that would be. 

I’ve had so many encounters with medical providers at my local academic medical health center that it’s difficult for me not to go off on a rant about each horrible experience. My hope is if the providers I have encountered knew how they affected me, they would never behave that way again.

Before I go on about the bad, I want to say I have had some good medical providers. For me, a good medical provider is familiar with my medical history but understands I know my history best. I have no control over what other providers document in my medical records, but I am present for each and every doctor’s appointment and medical test I have. I am a good reporter of what is said and done.

To me, a good medical provider knows documentation is not perfect and can leave room for error, misunderstandings, inaccuracies and overall lack of documentation. A good medical provider
can recognize I am capable of bringing appropriate clinical questions to my appointments and will answer these with thought. 

Also, a good medical provider tries to engage other medical providers on my team. Most
importantly however, a good medical provider does not see me as a difficult patient but rather as someone whose life has been made difficult by a number of medical conditions.

For every good medical provider I’ve seen, there are at least 10 bad ones I had to see to get to them.  These providers gaslight me, dismiss me and some have outright harassed me. 

A vascular surgeon recently told me I have no proof I have a connective tissue disorder, despite the fact I saw a world-renowned genetic expert who wrote a lengthy letter diagnosing me. Never mind the fact that this connective tissue disorder has ruined my life, career and health. It’s caused artery dissections and led to two spinal surgeries.

These are very serious and life-threatening aspects of a disorder a vascular surgeon wrote I was lying about because I forced him to return a phone call he asked me to make.

I have post-traumatic stress disorder (PTSD) from doctor’s appointments. I have nightmares and flashbacks of things that have happened to me at the hands of bad providers. I have sought
counseling and have coping skills to help me, but the problem is the trauma never stops. I continue to encounter these providers who would rather accuse me of lying, write evaluations of their impression of my personality and try to sabotage relations with other providers.

Imagine watching yourself become slowly disabled. One day in your early 20’s, you cannot keep up with your friends going out on the weekends. You can only go out for a few hours. Then, you can’t go out at all if you want to make it through the work week.

Then, you are sleeping more than you are awake. After that, you can’t use your hands properly.  And then, you can’t live alone or make it through the work week or physically support the weight of your own head.

All the while, you parade yourself around to medical providers who tell you to walk your dog more, do Zumba, worry less and just stop focusing on your health.

There are two options for people like me. One is to do nothing. Fade into nothingness. Give up your house, job, car, friends and ability to support yourself. The other option is to continue to parade yourself around to doctor’s offices hoping you might find a good doctor on a good day that will listen to you and want to help. 

I don’t believe my symptoms are untreatable or progressive. I’m suffering from being ignored, having egomaniac doctors and just bad medical care all around. 

The main problem is the things these gaslighting providers have written in my medical records. The accusations I am fine, that I am exaggerating, that I am lying. The insistence my problems are mental or due to my “strong personality.” 

If you need any proof that half the problem is what bad providers have written in my records, note that each and every time I leave the academic medical health center I am bound to per my insurance
and pay out of pocket for a private physician or a different hospital system, I receive a clear diagnosis from objective testing and a clear treatment plan.

Maybe part of the problem is the physicians and providers in the medical system are overworked.  When they see a complex patient on their schedule, they get mad. Perhaps there isn’t enough time to document accurately in my medical records, so they just write what they remember most: Comments about my personality. 

The system is broken. I should be able to remove these damning logs from my medical records to stop the gaslighting, but physicians are in control of your records and refuse to change notes. 

Hospital administrators are invested in their physicians and refuse to correct their behaviors. In fact, the hospital administrators I have encountered have been the most evil of all.

Recently, a vascular surgery clinic administrator sent me to a different hospital system for a second opinion to “calm down.”  Instead of being reassured, the outside hospital discovered a major artery problem that needs to be addressed with a serious surgery. What was the response of the
referring department? They said I had “Munchausen syndrome.”

I ended up ranting and raving more than I meant to, but the unprofessional behavior of some providers, the use of medical documentation as venting and the effort that goes into gaslighting can be life-threatening to some patients and needs to stop. 

At any rate, it’s interfered with my quality of life, ability to receive appropriate and timely medical care, my financial status from having to pay out of pocket and my mental health. My cause of death may certainly be a doctor who decided I was lying. 

Leave it to the legal system to determine truthfulness; medical providers should only practice
medicine. Just because the entire medical system is broken does not mean it’s OK to be a jerk and patients should suffer.

Getty Images: BongkarnThanyakij