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Returning to the Hospital Where I Was Mistreated as an Undiagnosed Child

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How do I go back to the hospital that I associate my worst nightmare with, even though it has been given the name as the top hospital not only in the country, but in the world? How do I go back to a hospital that caused me to be diagnosed with post-traumatic stress disorder (PTSD) from my month-long experience there at the age of 14? I go back with the help of seven years of counseling, and after all of my specialists have told me I need to go to have the best doctors in the world take another look at my complex case.

• What is PTSD?

When I was 14, I was in a pediatric pain program at this hospital for children who didn’t have a concrete diagnosis. During this program, I was told it was “all in my head.” My wheelchair was taken away from me, my feeding tube pulled and I was to be punished if I showed pain. Maybe this mentality works for some. But for many of us in this program, it did not. The program is a month long, and after we had “graduated” from the program, many of the people who had been in my class started having suicidal thoughts, and a few attempted suicide.

 

Thankfully, after this program, many of us got the help we needed. I found out that my illness is not “in my head” and I have six different severe diseases. If I hadn’t fought for what I felt was going on in my body, I don’t know where I’d be today.

But how did I end up going back to the hospital that caused me so much depression, anxiety and PTSD? I see many different specialists and because my conditions are getting worse, they all decided it would be best if I made the trek to the best hospital in the world so they can see if they can find a more concrete plan. It would be completely different than the pain program, now that I have many different diagnoses.

I didn’t know how I would ever be able to go back there. Getting within an hour of the city where the hospital is located throws me into a complete anxiety attack. The PTSD comes roaring back and all the horrific memories flood my mind. But I knew this is where I had to go if I wanted any real chance at a future.

I had to face my fears. I packed up my life and moved to the hospital with my mother for a couple of weeks for testing and appointments with countless different specialists. I just needed to get through day one, and day one was tough. It was filled with crying, anxiety attacks and remembering the black hole that consumed me many years ago. This program didn’t just hurt me, it also hurt my mother, who was with me so many years ago. It severely affected our relationship at the time because she was supposed to be the enforcer when the doctors weren’t around.

It was a dramatic change from when I was 14 at this hospital to me now, being almost 21. At 14, I was told I was “crazy” and it was “all in my head.” But this time it was, “You have gone through so much at such a young age,” and “The amount of diseases and diagnoses you have is quite rare.”

I am proud of what I have accomplished by going back. I am hopeful that we will find a more concrete plan so I can stay on this earth to enjoy the beauty of life. My friend visited me during these couple weeks at the hospital and asked if it’s normal to see so many sick kids. And I said yes, because I was one – now I’m just a sick young adult.

This is the reality of being young and chronically ill. You never know what is going to happen from one day to the next. Seize the day.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

Thinkstock photo via Archv.

Originally published: June 23, 2017
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