Imagine a time when you’ve felt sick. Now imagine doctors couldn’t find a biological reason for it. You know your body is experiencing real symptoms, but medical tests fail to prove it. What do you do next, and who can you turn to?
Being referred to specialist after specialist can be both exhausting and discouraging.
This is when many patients begin to doubt their own body and intuition. They quit searching for answers and become secluded. What these patients fail to realize is that it may not be a medical disease. Instead, the problem may fall under mental illness.
Conversion disorder, also known as hysterical neurosis and mass hysteria, is an illness where patients’ bodies are affected by neurological symptoms that cannot be found organically through medical testing. Again, it is speculated that individuals suffering from conversion disorder have an underlying emotional event that created such a psychological conflict that body and mind do not work together properly.
It is important to note that these patients are not making up their symptoms because that is qualified as malingering and factitious disorder and not conversion disorder. Symptoms usually appear suddenly and can cause a disturbance between voluntary bodily functions.
Symptoms can include conditions such as blindness, the inability to speak, numbness, paralysis, poor coordination, seizures or convulsions, and hallucinations. These symptoms appear as a way for the brain to cope with what it perceives as a threat.
Several cases of conversion disorder presented themselves in October 2011 when girls from Le Roy, New York began showing a variety of unexplained twitches, convulsions, and ticks.
The cases baffled doctors, but after further research, Dr. Jennifer McVige—a pediatric neurologist who saw 10 of the girls—determined that each girl had gone through a significant trauma that could start the disorder. The girls, McVige said, could have been unconsciously influencing the others by her own symptoms.
Dr. John Speed explains more about conversion disorder in his interview here:
“One day I was just sitting there in science, and my lab partner thought I’d fallen asleep,” said Kayla Flanary, a 19-year-old from Salem, Ore. “The bell rang, and everyone left. My teacher tried to wake me up, but I just passed out and fell on the floor. I woke up on the ground and wondered what I was doing. The school administrators put me in a wheelchair, and then they accused me of not eating.”
Eating was not the problem for Flanary. She later had an episode while on a church youth event while going through a cave.
She said: “We were in a cave, and I got really dizzy really quick. We sat down on
these rocks inside, and all of a sudden I turned really pale and quit breathing. My youth minister started screaming for someone as I started convulsing. They literally had to carry me out of the cave. The only thing I remember is waking up on a backboard with a neck brace in a panic.”
It took about a year to officially be diagnosed with conversion disorder after her second episode. Flanary had received a referral to a local neurologist who told Kayla’s mother she was acting this way for attention and that whatever was going on was “all in her head.”
Whenever Flanary would have an episode, people would ask her what was going on.
“I would say: I don’t know. We think it might be this, or we think it might be that. I don’t care at this point! I just wanted a diagnosis that I could explain to people and tell them what I have instead of saying I don’t know,” Kayla said.
Once she received her diagnosis, she began to cry. The doctor asked her why she was so upset, and Flanary responded that she was not upset, but she was happy. She knew they could finally start moving toward a treatment plan.
Hear Flanary’s full interview here:
Hilarie Folk, a 50-year-old from Milbank, S.D., received her conversion disorder diagnosis in July 2009 after 24 years. Folk’s conversion disorder started shortly after she gave birth to her twin daughters while living with an abusive ex-husband. She also suffered from Post-traumatic stress disorder, depression and anxiety.
“I had non-epileptic seizures shortly after they [the twins] were born due to emotional and physical abuse,” Folk said. “The Navy doctors didn’t know what was going on with me; I had several doctors think I was faking my illness for years. Even my second ex-husband, Jerry, thought I was crazy.”
Folk experienced seizures, headaches, paralysis, numbness, tingling sensations, slurring of her speech, and an inability to swallow. She went to more than 30 doctors searching for a diagnosis, and each time doctors, friends and family assumed she was doing drugs or making herself sick for attention.
“They said I was being selfish and an attention-getter,” Folk said. “I was furious!”
Folk spent a lot of time in hospitals for physical, occupational and speech therapy. She had to learn how to walk, talk and function again. Then she was rushed to the hospital after she collapsed.
“I was in [the hospital] for a couple days when the doctor told me I had CD,” she said. “I was in shock, and so was my husband. I was relieved to know I wasn’t totally crazy. A couple days later I was transferred to a mental health facility and was taken care of while I learned more about my disorder.”
Folk started hypnotherapy treatment in March. The first session consisted of finding a common thread that worked for both Folk and her therapist, Folk’s history, and some mild meditation and hypnotic therapy.
“She would give me suggestions of feeling safe in an angel or saint’s arms, and they would be calming and reassuring, and it helped me so much,” Folk said. “It comforts me in a way I can’t describe; it works. She is amazed with my progress, and so is everyone else that has seen the change in me. I have worked hard, and I will continue to work hard.”
Folk also took medications to try to help her conversion disorder. Her conversion disorder went into remission on June 28.
“The advice I would give is to learn, learn and learn because the more we know about our illness, the more we can help with our recovery,” Folk said.
Folk also had advice for individuals going through conversion disorder.
“I would wash my hands of those who don’t feel it’s real, or that we are faking it,” Folk said. “As hard as it would be, it is worth keeping them at bay for your health. Educate them when they are ready to listen.”
What is a somatization disorder?
Conversion disorder falls under the category of somatization disorders, which are chronic illness where a patient shows signs of physical symptoms, but there are no organic or physiological causes found for the symptoms. These disorders are most often found in women before age 30, and often it is in conjunction with another mental health problem such as depression or anxiety. There are four somatoform disorders: body dysmorphic disorder, conversion disorder, hypochondriasis and pain disorder.
The initial cause of somatization disorders is still unknown, but it is speculated that having existing conditions such as depression and anxiety or after a significantly stressful and emotional event can cause it. As a result, patients go through a myriad of symptoms, including gastrointestinal problems, pain, pseudoneurological problems and sexual dysfunctions.
According to doctors Oliver Oyama, Catherine Paltoo and Julian Greengold, patients living with somatization disorders go through significant emotional distress.
“Treatment success can be enhanced by discussing the possibility of a somatoform disorder with the patient early in the evaluation process, limiting unnecessary diagnostic and medical treatments,” wrote Oyama, Paltoo and Greengold.
Most frequently patients will go through medical testing before coming into contact with a psychiatrist, psychologist, or neuropsychologist. As a result, some patients go through an onslaught of X-rays, MRIs, CAT Scans, EEGs, EMGs, blood work and consistent changes in medications.
Treatment and Management
There are a few options when deciding on a treatment for somatoform disorders.
One mode of treatment is counseling and psychotherapy. Talking about a stressful event with a counselor specializing in conversion disorder can assist patients in learning how to consciously and subconsciously deal with physical symptoms.
According to Maria Borowski, “Continued work to learn how to deal with stressors throughout life will also be important, as about 25 percent of patients with these disorders often have future episodes.”
A second option is pharmacological therapy. Antidepressants and anti-anxiety medications can treat underlying conditions. The conversion disorder could possibly improve, but it depends on each individual.
Hypnosis, although unconventional, can be used by trained experts to resolve subconscious psychological problems within patients with conversion disorder; usually this is a treatment done alongside another form of psychotherapy.
“The most helpful approach may involve collaboration of a primary care doctor with a psychiatrist and a doctor from another field, such as a neurologist or internist,” according to the Merck manual.