1,277 days. That’s approximately how long it took Nic Newling to figure out he was dealing with bipolar disorder after first reaching out for help.
Newling was born and raised in Sydney. He first began to notice something was wrong when he was a young teen in school. He felt panicked and burned out ― sometimes for no reason at all ― and it was severely destabilizing his everyday routine.
“I was a high achiever in school,” Newling recalled. “I was really dedicated to it, but halfway through that school year, I noticed I was getting really stressed and anxious. And from there it was a really long journey of trying to find the right help.”
He was admitted into an adolescent psychiatric hospital at age 14, where physicians believed he was dealing with some form of psychosis. He stayed for nine months.
Newling was diagnosed with major depression, schizophrenia, obsessive compulsive disorder and schizoaffective disorder. He received medication and therapies to treat those specific illnesses. Nothing seemed to work.
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At age 16, he underwent shock therapy, also known as electroconvulsive therapy. The controversial treatment sends small electric currents through the brain to alter its chemistry and treat issues like depression.
Newling reports feeling suicidal at the time. He knew, deep down, that he wasn’t getting the right help.
Data published by the National Depressive and Manic-Depressive Association found that 69 percent of people with bipolar disorder are originally misdiagnosed, and more than one-third remain misdiagnosed for a decade or more. Many factors can contribute to this, including the delayed onset of certain symptoms or patients not sticking with treatment.
After three and a half years of incorrect diagnoses and different treatment methods, Newling finally found relief during a stay at a different psychiatric facility. His attending doctor caught him in a period of mania. After another evaluation, his physician diagnosed him with bipolar II disorder and gave him more specific medication to treat it.
“I felt skeptical at first,” Newling said. “I’d been told I have so many different conditions over the years, and each one came with months or years of traveling down a path of no relief and diminishing hope.”
The Dangers Of Misdiagnosis
The major reason people are misdiagnosed is because their symptoms often materialize in different ways, says Bob Carolla, a spokesperson and senior writer for the National Alliance on Mental Illness.
“Finding the right treatment plan comes in stages,” he said. “Not all symptoms may be appearing at the same time. Others may not be immediately recognized as symptoms.”
This is especially true when it comes to high-functioning people. For example, if a person is ordinarily achievement-oriented or creative, it may not be obvious they’re having a manic episode, Carolla said.
While there are no definitive statistics on how often mental illnesses are misdiagnosed as a whole, research suggests that bipolar disorder is the most misdiagnosed condition. This could mean more treatment costs and lost workplace productivity, as well as increased risk of suicidal thoughts if the person isn’t getting the most effective care.
To rectify this problem, it can be useful to have more frequent check ins with a doctor ― especially when a person is first seeking help, according to Victor Schwartz, chief medical officer of the mental health group The Jed Foundation.
“It’s really important for both the patient and the clinician, when they don’t know what kind of issue they’re dealing with, to be in touch more often,” he said. “You need to evaluate things more consistently.”
There also needs to be better access to medical support, Schwartz says. Current data suggest that treatment is becoming less accessible thanks to issues with health insurance and a lack of available providers.
This is particularly true in the rural U.S., Schwartz explains, where patients may be most affected by the shortage of mental health professionals. A 2016 report found that people living in certain states struggle more to get help. Alabama, for example, has one mental health worker per ever 1,200 people.
Regardless of their nature, roadblocks to treatment can contribute to the patient losing hope. That’s why it’s so critical to perfect the diagnosis phase.
Newling says he feels lucky that he was able to receive the help he did, especially since he was also having suicidal ideations. But he wishes it hadn’t taken so long.
“I was very thankful, but also really annoyed that it took so long to get right,” he said. “I’d seen many doctors over the years who were very skilled, but it still took most of my adolescent years away from me.”
How Stigma And Symptoms Impede Progress
Not only did Newling struggle to receive the right diagnosis, but he also felt he had to keep the entire process “hush, hush,” he said.
“It’s not always just judgment from others you’re worried about, it’s often that internalized shame or fear,” Newling said. “You start to feel like people have a right to feel uncomfortable or weird toward you. A lot of that comes from within.”
Negative stereotypes about mental illness often prevent people from reaching out for help, research shows.
“Stigma is in our culture. It is in our language,” Carolla said. “People are afraid to ask for help because of what may happen. It is in perceptions created by movies or television shows that link mental illness to violence or use it as the butt of jokes. Some also internalize stigma, believing stereotypes or myths and destroying their self-esteem.”
And as people with mental illness contend with those issues, they must also cope with symptoms that can be debilitating and make them feel like they’re not getting any better.
Bipolar disorder can cause a sense of hopelessness and make it difficult to sleep during the depressive phase. The period of mania can cause increased risk-taking and a heightened sense of euphoria. Some people, like Newling, may also experience racing thoughts during this phase.
“The perpetual flurry of random, disjointed words would fill my mind,” Newling said of his symptoms. “I couldn’t hear the real world.”
These side effects prevented Newling from experiencing a full and productive life, he says. Even though he was once high-achieving, his will had gradually evaporated.
“I was more comfortable ‘existing’ rather than ‘living,’” he explained. “It felt like a slow death.”
The Relief Of Getting The Right Treatment
Mental health professionals stress that it’s vital for patients to stick with the treatment process to help manage their conditions. It can sometimes take three months for treatment to start working, according to Schwartz.
On top of that, no one method will be effective for everyone. A combination of techniques is likely to be most effective, experts say. Therapy can rewire the brain to help with mental health symptoms, but some people also need medication or other lifestyle changes.
Newling says it felt like a door had opened for him after he got a correct diagnosis.
“I felt I had a way forward,” he said. “I believed that it could be possible that I might want to live and that I might have a decent life ahead of me.”
It’s been well over a decade since Newling discovered he had bipolar disorder. At age 30, he’s been able to fully manage his condition and lives a normal, enriching life. He’s also now a fierce advocate, working with mental health-related organizations like The Champions and R U OK? to share his story.
“I look forward to the future in a way I never thought possible,” he said.
As part of May’s Mental Health Awareness Month, we’re focusing on treatment and the stigma around getting help. Check out our coverage here and share your story at firstname.lastname@example.org.