What the Doctors Who Dismissed Me Need to Realize

Dear doctors who chose to dismiss me,

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I am writing this letter in hopes that what happened to me will not happen to someone else. To refresh your memory, I have Ehlers-Danlos syndrome (EDS), postural orthostatic tachycardia syndrome (POTS) and many other chronic illnesses. I came to the hospital experiencing difficulty swallowing and abdominal pain. I had high insulin levels. After being in the hospital for about seven months, you concluded there was nothing wrong. You even insinuated that I was “making it up.”

Since you chose to give up, I did my own research in the hospital. I had asked for the hydrogen breath test for SIBO and to be kept on metformin to manage my insulin levels, but you denied both of my requests because you assumed it was psychiatric. By ignoring me, you made my symptoms worse and delayed my recovery. You never believed anything I told you –even if my family backed me up. You never dug deeper because you thought you knew what was going on. Because of your carelessness, you missed multiple conditions that went undiagnosed. You even got my family to believe you for a while. And how could they not? You have the white jacket and the clipboard that made them choose your “authority” over their own daughter.

I want you to know how much you hurt me. You made me feel delusional when I knew I wasn’t. You abandoned me when I needed answers. You gave up and let me suffer when there was something physically wrong. You blamed me for things I never did. I had to fight every day to try and get you to listen to me. Can you imagine being sick and miserable, and then going to the place that is supposed to help you, only to have them dismiss you? I sat day after day while you told me that nothing was wrong, that it was an eating disorder, that it was “all in my head.”

You tried to use your power and authority to scare me, knowing no one would believe me if I told them about how you treated me. I would like you to think about all the nights I spent on the bathroom floor throwing up, and how you even doubted I had thrown up at all. I want you to remember all the days I spent crying because you were forcing me to eat food that was making me sicker. You made a choice not to listen to me, and that choice ended up nearly killing me. I was in pain for so long. It could have been avoided if you were willing to listen to and believe me.

You have traumatized me and taken away part of my life that I will never get back. Sadly, I have grown accustomed to doctors who do not believe me. It’s only years later that I found answers. You see — I never give up, no matter how many times you tear me down and tell me to quit. And if it weren’t for my perseverance and tenacity, I would have never gotten better.

Next time you come across a medically complex patient, please listen and take them seriously. It saddens me to think about someone else suffering for as long as I did. I believe if you, as well as the rest of the medical team, had the same amount of perseverance as I did, this all could have been solved.

It’s important to remember that though you have diligently studied and practiced medicine for years, you do not know everything. You need to listen to your patients instead of making assumptions without thoroughly exploring all options. There is a difference between what is right and what is easy, and hopefully in the “future” you will choose what is right, as vulnerable patients depending on you walk into the hospital.

Since I now have doctors and specialists who believe me, I am starting to get better. I am getting a G/J tube and a port put in. I am also having an octreoscan because my doctor believes I have neuroendocrine tumors and lymphoma. My rheumatologist is also confirming the diagnosis for lupus.

It’s been life-changing to have doctors working side by side with me, never giving up. Even though my EDS is a very severe, “special” case, they recognize that my condition does exist, and there is something wrong. I sincerely hope you can learn from this experience, and though we can’t change the past, I hope this will help make you a better doctor in the future.