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Kylie DeNiro

Mrs. Jackie Burr, Instructor

English 2010

March 17, 2022

Living with a Misdiagnosis

Misdiagnosis vs Missed Diagnosis, what could be the difference? Many people think that

they are the same. Misdiagnosis is when a doctor diagnoses a patient with a medical condition

that is different from the condition they present with. Missed diagnosis, or a delayed diagnosis, is

when a doctor doesn’t realize that the patient has a certain diagnosis. Misdiagnosis in healthcare

is more common than most people think: happening in around 1 in every 20 patients in America.

Living with a misdiagnosis can be difficult and costly, putting effort and time into treatments for

something that wasn’t the problem.

Hailey has been a long-time friend of mine. She has suffered from many mental health

issues and at age 16, she was diagnosed with schizophrenia. Prior to her diagnosis, she was in

therapy for anxiety. One night, a sudden, spine-chilling tapping noise came from her walls. The

tapping became so unbearable that she could not sleep. Nervously, she asked her father to sleep

in her room to see if he could hear it too. The following morning, he explained that he couldn’t

hear anything. She told her mother that there was a man in her walls. On May 7, 2020 she got

evaluated by a psychiatrist for anxiety, depression and obsessive-compulsive disorder.

“I went in and they didn’t test me for schizophrenia initially. I did two tests,” she

explained. “The first test was a yes-or-no test and during the second one they asked me questions

and I had to explain. They asked me to explain the tapping noise, what I thought it was, and if

I've ever had any other hallucinations. They asked me if I had been traumatized.”
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On May 20, 2020 she was diagnosed with schizophrenia. She was asked to have a

meeting with her parents and her psychiatrist. Upon arrival, she was immediately brought to

another room and separated from everyone else. Her parents were brought into a room with her

psychiatrist.

“My therapist asked me if I knew what schizophrenia was.”

Talking with her therapist about it made her feel scared for what was going to come. Why

did they have to be in separate rooms? Why did this fall onto her?

Once they were brought back together, the psychiatrist and therapist explained that

Hailey’s treatment needed to start immediately because her condition was degenerative. The

doctors set up a plan with her and her parents if her condition got worse. They explained that she

would have to go to a mental hospital and gave a list of options of mental hospitals in the Salt

Lake area. She was put on antipsychotic medication.

“They made me feel weird and suppressed my appetite a lot.”

“When I went home, my parents cried and couldn’t look at me for a week. I actually

didn’t cry about it. I was like, ‘meh’, and lost five pounds.”

She kept a journal when she was diagnosed to keep track of her thoughts, feelings,

delusions and hallucinations. One of the excerpts said:

“You found out you have schizophrenia last Wednesday

No one took it well. I guess they aren’t supposed to.

You still don’t feel human.

I don’t think you ever will, not completely anyway. You don’t really eat anymore. You

want food but not for flavor, not for happiness.

Nothing sounds good, you want something that isn’t real.

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I don’t think you’ll feel human ever. You never really have.

You hate being at your house again. You just want to sit in your room locked away.

You still don’t miss anyone.”

She explained to me some of her delusions that she had while on her antipsychotic

medication. In the journal of hers she wrote: “Don't know which thoughts are mine and don’t

know which thoughts of mine are real.” She had some more mild delusions, like thinking there

was a fly buzzing around her when there wasn’t, for example.

One of her most serious delusions was about her parents. “When they would do

something out of the ordinary, I would freak out. I thought that they were replaced by someone

that looks and sounds exactly like them. I would have to check their rooms and around the house

to make sure their body wasn’t hiding there.” She began to get antsy as she was recalling the

memories.

She went on to explain Capgras syndrome to me. Capgras syndrome is a condition in

which someone believes that their loved ones have been replaced by an imposter.

I asked her about her therapist and her psychiatrist. She explained to me that it would be

better if they both were working together. She said that since she sees her therapist more, she

feels like she understands her more than the psychiatrist. But since her therapist can’t prescribe

medications for her, it’s difficult to know what she needs to be put on.

Out of nowhere, her symptoms stopped. She stopped having delusions, hallucinations,

and other symptoms. She was confused. Why had they stopped? She went to the psychiatrist and

they told her, “We actually don’t think you have schizophrenia, sorry.” The doctors wanted to

retest her to make sure that they were correct but she didn’t want to. Why would she get retested

if they were wrong for a year? Why would she waste more time if they were incorrect for a
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second time? She was taken off her antipsychotic medication and was sent on her way with a

poor apology.

“I didn’t feel any more normal than I did when I was on the medication.”

Since then, she has been getting only treatment for her original diagnosis, general anxiety.

I asked her to tell me about how it has affected her life now. She explained to me that people tend

to take her less seriously in dangerous situations because of her diagnoses, as they think she

cannot defend herself or make serious decisions. People tend to distrust her before they’ve gotten

a chance to know her because of the way that the media portrays schizophrenia. It’s hard to live

with a misdiagnosis and to navigate life after the fact. Her life is permanently altered by this

misdiagnosis, as are millions of other’s lives.