One thing I don’t really discuss is my childhood with an incorrect diagnosis, but it’s time for that to change. I should start by saying that I may have anger towards the doctors that misdiagnosed me, but in no way do I blame them. It’s not their fault that they did not recognize a rarely known genetic disorder. I know that my doctor was doing what she believed was best for me.
For the majority of my childhood, no one believed that my pain was real. No one could see it. I was accused of faking, exaggerating, and manipulating. At age seven, I began seeing a psychiatrist and was diagnosed with anxiety and depression. Those diagnoses were accurate.
Over the next few years, I grew increasingly frustrated. I was always in pain, I struggled with basic tasks, and I didn’t understand what was happening. I tried voicing my concerns, but I was told that I couldn’t possibly be experiencing the things I was. That’s about the time that I began to self harm. I don’t know why I started self harming at such a young age; maybe it was the only way that my eight year old brain knew how to express my pain. I was placed on an inpatient psychiatric ward and diagnosed with Bipolar Disorder.
Things went from bad to worse. From the time I was eight to the time I was thirteen I was admitted to psychiatric hospitals about ten times. I was placed on many medications, all of which made me extremely ill. The anti-psychotics actually made me psychotic. I quit speaking about my pain. I even convinced myself my pain was not real.
I hit rock bottom when I was thirteen years old. I could no longer ignore the fact that I was in serious pain. I was having black outs in my vision and collapsing when I would stand up. My psychiatrist told my mother that I was faking it for attention. I was placed on a psychiatric unit once more for suicidal behavior. This time I was put on Seroquel, a medication that nearly killed me. The Seroquel didn’t help, so my psychiatrist kept increasing my dose. Eventually my little one hundred and ten pound body was on one thousand milligrams.
Meanwhile, the black outs in my vision were becoming more frequent, and I was developing tachycardia. One day my mother saw me stand up off the couch and immediately fall to the ground. When she tried to talk to me I was unable to respond: she realized I wasn’t faking. She took me to a cardiologist who suggested that I should be taken off Seroquel to see if that eased my symptoms. I was hospitalized once more and it was determined that I would be switched from Seroquel to Latuda. The switch wreaked havoc on my body. I developed a severe reaction to Latuda while also going through withdrawal from the Seroquel. I could not eat or drink and lost fifteen pounds in less than a week. I was taken completely off both medications during my hospital stay. Never again have I been put on any similar medications.
About a year later I was diagnosed with Ehlers Danlos Syndrome and Dysautonomia. After a little bit of research, I learned that it’s not uncommon for people with conditions like mine to be misdiagnosed as Bipolar. The changes in adrenaline are often mistaken for Bipolar episodes, and “brain fog” can often look like dissociation. I also found out that high doses of Seroquel are extremely dangerous for people with autonomic nervous system disorders.
Unfortunately, accurate diagnoses did not solve all of my problems. My doctors still don’t know exactly how to manage my symptoms, I still struggle with self harm, and there are still more questions about my health than answers. At least I am finally being treated for the proper conditions.
I sincerely hope that educating doctors about EDS and Dysautonomia can prevent other people from having experiences like mine.