When Your Mental Illness Is Continually Misdiagnosed

I’ve struggled with mental illness for 12 years. I began reaching out for help four years ago. I was eventually correctly diagnosed two years ago. Every day remains an internal battle, but finally knowing the root of why I fight and why I feel this way gives me some sort of solace.

I’ve had two incorrect diagnoses before being diagnosed with schizoaffective disorder. When I can first recall symptoms of my diagnosis, I was a sophomore in high school. I began to feel extremely sad, unmotivated and lonely. I thought having these emotions was completely “normal” — just typical teenager feelings — because I had friends, played sports and had a loving and caring family. Every time I felt this way, I would hide in my room and just stare at the window or try and sleep to avoid the overwhelming sensation of hopelessness. These days would come and go throughout the rest of my teenage years and I would just brush them off as something everyone my age felt.

When I was a sophomore in college, the feelings that continued to linger with me reared their massive head bigger and stronger than ever before. However, instead of feeling just down on myself and hopeless, thoughts of suicide crept in. Not only would I be severely depressed, sometimes for weeks, but I would also be so hyper and frenzied that I would make terrible choices. I couldn’t figure out why I would be suicidal one day and then turn around and not be able to sleep, spend all of my money and make risky decisions the next. I didn’t realize it then, but I was spiraling out of control mentally and even physically.

It wasn’t until I was in graduate school, age 22, that I told someone how I felt. I had perfected hiding my emotions because, like I had always thought, everyone felt how I did. At this point, I was also beginning to hear voices, see shadows and bugs crawl all around me, become extremely paranoid that people were watching me through my window at night and that the news I read and songs I heard were about me. That year, I was encouraged by a friend go to the free university behavioral health doctor. On my first visit, I explained my emotions and my actions. The doctor shrugged it off as depression and prescribed me medication. It was only four days later that I found myself hospitalized. While I was in the hospital, I knew my feelings and paranoia weren’t just depression, but no one did anything. I continued to be prescribed a variety of antidepressants and sent on my way.

After I completed graduate school a year later with many hardships in-between, I moved to Charleston, South Carolina with my now husband. He, along with my family, encouraged me to continue to seek treatment. While in South Carolina, the depression, anxiety, panic attacks, hallucinations and paranoia magnified in a way I never imaged possible. When I found a psychiatrist in Charleston, she diagnosed me with bipolar disorder and anxiety. The psychiatrist told me that simply taking antidepressants when I had bipolar disorder was counteractive and only made me worse. I was once again prescribed a variety of medicine to try and help me. However, the medication I was taking had little to no effect on how I was feeling. I became extremely suicidal and would sink into a psychosis state more often than not.

After only two years of living in South Carolina, my husband and I moved back to Kentucky. I was barely able to function, much less work, so we moved back in with my parents so I could focus 100 percent of my time to getting myself mentally stable. The first time I saw the therapist and psychiatrist, who I visit monthly now, I felt at ease. I knew they would help me out of this deep, dark, cold hole; I knew these people would help my decrepit-self live again. I told them how I felt, what felt like millions of medicines I had tried, how I know I’m not just bipolar or depressed and so on. It was there that they encouraged me to get a more thorough evaluation and test. I sat with a specialist for two hours examining every inch of my mental health. I took a 300 question test to evaluate how I felt at different periods during the day, weeks and even months. It was only after eight years of fighting a battle within my brain that I finally got a diagnosis that reflected my inner self.

Even after being diagnosed with schizoaffective disorder (something only .03 percent of the population has), I still have to fight. It has taken two years to find a combination of medication that works best for me, for now. I still have to remind myself that I need to take my medication because while I might feel fine at the moment and think nothing is wrong with me, I know I can go zooming down the shadowy dark parts of my brain at any moment. I will still have times of severe depression, manic episodes, anxiety, paranoia and hallucinations. Nevertheless, knowing what I know now and having the coping mechanisms I do, makes it a little more manageable each and every day. Don’t give up.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or reach the Crisis Text Line by texting “START” to 741741.

We want to hear your story. Become a Mighty contributor here.

Getty image via KatarzynaBialasiewicz

Find this story helpful? Share it with someone you care about.

Related to Mental Health

This is Us promo

5 Times 'This Is Us' Got Mental Health (Mostly) Right

Editor’s note: The following piece contains spoilers from the first two seasons of “This Is Us.” “This Is Us,” a poignant emotional drama on NBC, follows the lives of the Pearson family as they unfold in their own messy, unabridged humanness. Throughout the first two seasons of the show, viewers watched the characters live their [...]
storm trooper star wars toy looking up at edison lightbulb

What 'Star Wars: The Last Jedi' Taught Me About My Mental Health

Last week, I finally got the chance to see the latest Star Wars film, “The Last Jedi.” Now, you either love or hate Star Wars, but I was a big fan of the late Carrie Fisher. The first anniversary of her death passed recently. In fact, her anniversary was the exact day I saw the film which [...]
woman lying in bed with headache or depression

What It's Like to Live With Seasonal Affective Disorder

Even though I live in the south, winters can be brutal on my body, mental health and self-image. I have finally come to terms with the fact I have seasonal affective disorder (SAD) — a disorder that saps my energy and mood, beginning with the weather changes in fall and into winter. When my friends [...]
photo grid of celebrities who struggle with mental health

9 Celebrities Who Opened Up About Their Struggle With Mental Illness

1 in 5 adults in the U.S. experience mental illness in a given year, according to the National Alliance on Mental Illness. However, many people don’t seek help or share their experience. Here’s a list of 9 celebrities — some local — who have shared their struggle with mental illness and call for an end [...]