My Reactions When Someone Says I Can’t Have Schizophrenia

Sharing Experiences with Having a Schizophrenia Diagnosis

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In my experience, there is a prevailing misunderstanding among people in the public, as well as some in the medical profession, that you cannot be symptom-free if you have schizophrenia. In fact, if you are diagnosed with schizophrenia and have no symptoms once on medication, it means to even some well-seasoned therapists that you must have never had schizophrenia to begin with. Not all clinical professionals think this, but at least three licensed social workers I have worked with have told me that I can’t actually have schizophrenia because I am doing so well.

I have no symptoms of schizophrenia, so I can see where someone might doubt my diagnosis who doesn’t understand the power of antipsychotics. Yes, I have no symptoms, but it is because I am taking an antipsychotic for life, and I am so fortunate to have responded so well to medication.

My thoughts and reactions to these contradictory opinions have been many over the years, and my response when someone says this to me has evolved over time. I think in my early years of diagnosis, I struggled with cognitive and emotional healing, as well as coming to terms with such a stigmatized diagnosis, so I welcomed such feedback. But now, I have reversed logic. I now wear the label "schizophrenia" as a badge of honor, where it bothers me when people say I can’t have schizophrenia.

Feeling Redeemed

In my early years of recovery, I loved for someone to tell me they didn’t think I had schizophrenia because the weight I felt under the word seemed crushing and condemning. When I headed toward complete remission, a licensed professional counselor who specializes in schizophrenia told me that maybe I didn’t have schizophrenia because I had made so much of a recovery. I felt redeemed, like there must have been nothing wrong about me in the first place, through my therapist questioning this diagnosis.

I wanted someone with a magic wand to make it all go away so I could move forward, and if someone questioned my diagnosis, that seemed to be the magic I needed for it to all be a bad dream. If someone could remove that word, it meant that my past would disappear, and I could indeed start over again.

Of course, telling someone they must not really have a diagnosis can be risky and cause harm. Telling a patient that a mistake must have been made may lead a patient to question the diagnosis, medicinal treatment, and the value of their psychiatrist’s opinion.

Feeling Invalidated

I have had two other licensed social workers tell me the same thing the first one did, but now I have a different reaction years later. When someone now tells me I can’t have schizophrenia, I feel like I am short-changed, like they are entirely undercutting everything I have endured to get where I am today. Most people today cannot imagine what my life was like over a decade ago, and it is a triumph that I physically survived my psychotic breaks and emotionally survived them, too. I have worked so unbelievably hard to get to where I am today through weekly therapy for two decades, psychiatry visits and medicine adherence for two decades, and endless patience. For someone to say that to me means I didn’t go through what I thought I went through, that it must not have been that bad if I am doing so well now.

The flip side is that I disclosed to another medical professional that I have schizophrenia, and they took the opposite stance, that instantly upon my disclosure, I am no longer a safe or reliable person. Again, this person could not reconcile the word schizophrenia with the fact that you can go into complete remission and be a fully stable, symptom-free person. In this sense, I also felt invalidated. This person at my son’s pediatrician’s office told my husband in front of me that I could not be left alone with his son, as if I didn’t give birth to him, all because I shared with her my diagnosis in a routine questionnaire when she asked about mental health history in my son’s family.

Feeling Proud

Just like calling someone a survivor of another medical illness, I am a schizophrenia survivor. I see what I have endured as my badge of honor and perseverance. One day, I hope we can all wear our experiences with pride, with a color ribbon, where people see us as brave and strong for what we have endured and our challenges. Yes, the word schizophrenia has a stigma, but the word also has incredible gravity and power. I use that word to proudly describe to people the degree of challenge I have endured and overcome to get to where I am today, and the right people respect me for it. The word schizophrenia is an exclamation point on my life experiences that adequately describes the magnitude of my health challenges.

The bottom line is that I am not an outlier or exception to the rule. I am not this one miracle case that health professionals cannot reconcile. Many people do experience complete remission while on medication. According to a World Health Organization webpage, of the 24 million people in the world with schizophrenia, at least one-third of people with schizophrenia experience complete remission of symptoms.[1]

For all people diagnosed with schizophrenia, let’s all be proud and not hide what we went through or what we are currently going through. Let’s pick a color ribbon.