Tardive Dyskinesia is very hard to understand for someone who has not experienced the effects, whether directly or indirectly. The disorder is a known, ongoing side effect of the stomach medication Reglan and is characterized by uncontrollable movements in various body parts, ranging from facial muscles to the extremities. It is an intensely uncomfortable and frightening disorder; still, despite the medicine being subject to a black box warning from the FDA, this disorder continues to be waved away under the comforting language of “side effect.”

Sometimes the best way to get a perspective on something is to have a firsthand account from a patient affected by the disorder. To that end, consider the case of Joan T. Experiencing symptoms such as stomach pains and diarrhea, she went to her doctor. Believing Joan had Irritable Bowel Syndrome, the doctor prescribed Reglan, which Joan took for just more than a year.

“At first I had no problems with it,” Joan says of the medication. “Then, all of a sudden, I had uncontrollable movements. The doctors thought it was Parkinson’s disease.”

Parkinson’s disease is a very serious illness. There is no known cure, and it can lead to severe complications. It is not by any measure a small consideration. There is a reason Michael J. Fox has poured millions of dollars of research into the illness. Imagine being told out of nowhere that you have this condition.

In addition to this, the involuntary movements interfered with an eye surgery Joan was scheduled to have to correct cataracts. Her head was moving so much they had to physically restrain her for the procedure. Again, these movements are not small, irrelevant things that can be ignored. Tardive Dyskinesia is serious and interferes with people’s lives.

Ultimately skeptical, Joan researched the diagnosis of Parkinson’s and came across some information about Reglan. Realizing it had a black label warning, she ceased taking the medication and within a short while the tremors and movements stopped entirely.

“You never saw somebody so happy as I was,” she says. “I haven’t had problems with the movements since then… I wouldn’t recommend Reglan to my worst enemy. It’s horrible, having uncontrollable movements. You can try to hide them, but you can’t stop them.”