Minority Mental Health Awareness Month: My Search for Light

July 6, 2023

by Reggie Barnes
Director of Patient Partnerships,
The Autoimmune Registry

The thump of my head to the floor and seizures had rocked my afternoon. The quasi-state of communicating for help had only gone so far. As a patient that lives with the rare autoimmune disease GAD 65 autoimmune encephalitis, I was all too familiar with complex partial and grand mal seizures that my medical team has tried to control. I had done all the steps to prepare for this to happen. I wear a medical alert bracelet with all of my major medications and diseases on the front and back. I also had the benefit of a medical insurance company that cared about me and provided the technology of having a medical alert necklace for 24-hour service. By preplanning my medication bag, all 22 inside were lying next to my limp body on the floor, waiting in view for the EMT to see and take me to the hospital for care.

Living with rare diseases, we all take refuge by getting to a place of safety in a medical environment where we would be protected from the darkness of death. It is something we don’t ever want to think about. Doctors do sometimes miss the diagnosis. For me, it took over 15 years from the onset of my symptoms, during which some doctors believed, and some did not believe, that I was sick.  It was a road filled with bumps and emotional trauma that left deep wounds in my belief in fair and unbiased medical treatment, regardless of my beautiful and hard-fought tan.   Eye and body responded to the request to strip and pee into a cup. Responding to this simple request during a grand Mal is not easy, so the ER doctor inserted a catheter to speed up the process as she mumbled words and as I faded back into unconsciousness. I have had far too many seizures in my life, and this was not normal.

Crazy, Bipolar, or schizophrenic are all words I have been called. Labels that people use when they don’t know the truth or prefer to choose not to know the truth. It is easy to categorize a person that does not conform to “normal” behavior.  But behavior is not a diagnosis. I have lived in a world where this has shaped my reality.

I awake again in a medical gown in a hospital where I have never been in the city where I live. With all the tools, doctors and specialists with the best medical skills and science to reinforce their medical decisions keep my sickly body working. I had a feeling of being safe. Then I awoke my arms and legs in a straightjacket and only a gown. A label of a lie and pain. But there is light….

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