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Neurological Assessment

The Effects of Rediagnosis

How to make sense of mental health labels.

Key points

  • A rediagnosis does not change who you are or necessarily impact your long-term health outcome.
  • A rediagnosis does not change what illness you have; you already know the symptoms and live with them.
  • How well you are doing is more important than what label you have.
  • Identification and articulation of symptoms are key to identifying your mental health needs.
Alex Green / Pexels
Understanding what your diagnosis means for you and what it does not.
Source: Alex Green / Pexels

In my history of mental illness, I have been rediagnosed five times regarding my serious mental illness. Being rediagnosed in mental health is not unusual, as there is no blood test to conclude what you have. Diagnoses are classified through symptom-based measures according to the Diagnostic and Statistical Manual of Mental Disorders (DSM). I am coming to terms with being rediagnosed often and how I make sense of these experiences.

Putting My Diagnosis in Context

I have been diagnosed with major depression with psychotic features, psychotic disorder not otherwise specified, bipolar, schizoaffective, and schizophrenia. I was diagnosed with each one at a time, where each label replaced the previous one.

At the time of each diagnosis, it was emotional and powerful. I let each label I had just been diagnosed with redefine how I saw myself and how others would see me. I allowed each label to be a new reflection of my life and where I am headed.

But now I put my diagnosis in context with the fact that if I have been diagnosed so many times, maybe I’m not a classic fit for any one illness. Or perhaps my condition has evolved, and so has my diagnosis. Psychiatrists make their best assessment of you at the time, based on the symptoms you can report and they can identify.

What I have had to do is place my diagnosis in context with the fact that symptoms of psychotic disorders fall on a continuum where diagnoses are simply part of a classification system. They don’t tell you who you are as a person, and a change in diagnosis does not necessarily reflect a poor life outcome. Because diagnosis is symptom-based, the label itself doesn’t change or inform you of what you have; you already know, live with, and experience what symptoms you have that led to that diagnosis.

Focusing on How Well I Am Doing

I place less stock in my label now and focus more on how well I am doing. I realize that, ultimately, what matters the most, more so than my label, is that I am thriving and doing well, where I no longer have symptoms of a psychotic disorder. Now that I am doing so well, which label I am diagnosed with really bears no weight with my health outcome, other than the fact that I have a chronic condition requiring I take an antipsychotic for life.

My current diagnosis is schizophrenia with my current psychiatrist. My psychiatrist is still sure this is what I have. Still, my diagnosis is much less of a priority now because my medication is working, and I am doing well.

In other words, what does it matter what I am labeled when I have been in complete remission from my psychotic disorder for 11 years? The only reason I have cared about my diagnosis is the stigma of the word schizophrenia. Still, I am gradually learning to navigate that stigma better over the years. Also, I am learning how not to have a stigma against myself for having that label.

Knowing the Bottom Line

It gave me anxiety and frustration for the longest time when I kept being rediagnosed again. I felt like a human mystery and anomaly. I felt like the fact that I kept being diagnosed again meant that doctors couldn’t figure out what was wrong with me, and that would impact my treatment and recovery.

It also made me feel powerless over my condition and outcome. But the truth is, my symptoms were consistent—I have psychotic breaks when I don’t take an antipsychotic. Regardless of my diagnosis, the treatment and medication prescribed were almost always the same.

The bottom line is that I have to take an antipsychotic for life as a preventative measure. I am also lucky that antipsychotics work so well for me. Each diagnosis I have received relates to having psychotic symptoms requiring an antipsychotic.

So, regardless of the label, it doesn’t change my type of medication or the essential problem I have. And which label I have bears no relevance to the fact that antipsychotics have been the answer for me that has led to the next chapter in my life, where I am symptom-free of mental illness.

Remember to focus on the symptoms you have and being able to describe them to your doctor versus concentrating on the label. Since a mental illness diagnosis depends on identifying and describing symptoms, being aware of your symptoms, articulating them, and knowing whether you have them anymore should be your guiding light in treatment and recovery.

Even if you disagree with your diagnosis, it doesn’t change your symptoms, so monitoring them and discussing them with your doctor is critical for proper healthcare choices and leads to the correct diagnosis.

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