In the span of six weeks, back in the summer of 2007, my son received several different diagnoses, with each of four separate hospitalizations. The varying diagnoses ranged from schizoaffective disorder, to bipolar disorder with psychotic features, to schizophrenia paranoid type. Only six months prior, the first diagnosis was schizophrenia and a month later downgraded to Social Anxiety by the same doctor.

For many people, it is difficult to get an accurate diagnosis. First of all, it may take a long time before a person is willing or able to meet with a psychiatrist to be evaluated.  Some illnesses, like schizophrenia, are paired with a symptom called Anosognosia, which indicates that the person has lack of insight into their condition.  This is not the same as a simple case of being in denial.  The ill person really does not know they are ill, in the same way that someone with dementia does not realize it.

But once we overcome the hurdle of getting our loved one to seek professional help, there are no physical tests, exams, or blood work to be performed in order to determine the diagnosis.  Blood work might be performed just to rule out substance abuse.  One exception however is a brain scan for people with schizophrenia.  It is not conclusive, but when the brain scan shows enlarged ventricles (gaps in grey matter), this can indicate that the inflammation and loss of brain cells has taken place, one possible sign of schizophrenia. We had that scan done for my son in order to rule out a brain tumor, but most people with schizophrenia do not have a brain scan to help narrow down the possible diagnosis.  Most mental illnesses are determined based on noticeable behaviors and they must be demonstrated over a period of time in order to be considered valid.

Another reason it is difficult to determine diagnosis is because there is an overlap in symptoms and it is common for people to have more than one diagnosis.  The primary diagnosis is referred to as “Axis 1” and the secondary, “Axis 2.”  With schizophrenia in particular, it is now seen as a cluster of different neurological brain disorders.  This is plausible, even from a layman’s perspective, because there is a wide range of functionality and cognitive abilities between people with the same diagnosis.

In terms of day-to-day living, some people with schizophrenia can live independently, work, and maintain meaningful relationships with families and friends.  At the other end of the spectrum, even someone receiving treatment might be termed “low functioning” if they cannot live safely on their own, hold any employment or engage in conventional social interactions.

A psychiatrist will gather information from the patient directly and sometimes what is not expressed may be as revealing as what is expressed during a consultation. A wise doctor will also seek out the additional input from family members for more objective details. As well, it is generally only family members who can compare their loved one’s personality and behaviors from before the mental illness emerged to the profound changes after the fact. There is a very sad reality in play right now where HIPAA privacy laws often prevent concerned family members from participating in the treatment plan and providing input. That will be the subject of an entirely different article.

While blood work and x-rays don’t lie, the subjective input from the patient can sometimes significantly undermine the doctor or therapist’s ability to arrive at a correct diagnosis.  As an example, I once sat in on a therapy session my son had with his psychiatrist. When asked how he was doing, my son replied casually that everything was fine.  Meanwhile, I happened to know that he was very unstable and had just been given an eviction notice from where he lived. Fortunately, I was able to inform his doctor of the important change of events, after my son stepped out of the room and gave us a few moments of privacy. It should also be noted that the current relationship a patient has with their psychiatrist has changed dramatically over the decades, at least as far as mental illness is concerned.  Many mentally ill people will have lengthy discussions with a therapist, who then works with a psychiatrist mostly just for medication management. The psychiatrist may spend as little as five minutes with their mentally ill patient on a monthly basis.  If the person does not have a therapist (who cannot prescribe), the patient obviously gets inferior care.

It is usually only over time that a clearer picture comes through and this is also the case with medications. A trial and error approach is taken because a medication which provides relief for one person will not be effective for the next person. There are a dozen or so anti-psychotic medications on the market and sometimes it takes years to discover which one is best, in what dosage and in what combination. To add insult to injury (my favorite cliché to use regarding the mental health care industry), is that sometimes insurance companies have a larger say in what medications a person uses than their doctor. Sad, but true: some decisions are made for financial gain by the insurance companies.

To date, there are no cures for mental illnesses.  If correct, the diagnosis is also unlikely to change over time, even if a person achieves a level of stability and functional recovery. Because “anosognosia” (lack of insight) is so common with schizophrenia, coupled with persistent social stigma, when a patient is doing better, they may conclude that they are “cured” and do not need to continue taking medication or participating in therapy. Thus, a cycle of instability and relapse is the predictable outcome.

Author: Kartar Diamond, Mental Illness Advocate and author of Noah’s Schizophrenia: A Mother’s Search for Truth