Keeping It Real

By October 6, 2016Blog

In a recent conversation, a friend asked me why I refer to myself as “a schizophrenic” and not as “a person living with schizophrenia”. Their main concern was that I was associating myself too closely with the illness, which, while that was inaccurate, I completely understood. When I write, I frequently state that I have schizophrenia or that I am living with it. Still, I felt their question provided a solid focus for discussion.

I am not my diagnosis—about that I am adamant—but I will use its name to define myself when appropriate, much the same way a person living with diabetes might claim to be “a diabetic”. I have a diagnosis of schizophrenia, and I call myself “a schizophrenic”. It’s my choice to use that word.

The name of my disorder means, literally, “split mind”. Not of two minds, like the ON/OFF switch or the dissociative identity disorder which it is often mistaken for, but a mind fragmented, as the term has come to be understood in the profession. There’s the real split: the clinical terminology versus the incorrect and often stigmatized public usage.

Semantically speaking, am I schizophrenic? No, I am not. I have schizophrenia and I am a schizophrenic. I choose to address my illness in the most available way possible. I’m comfortable with the terminology because it’s accurate. It’s also my choice. I’m not allowing someone else to define my personality or my contribution to society by labeling me. I’m simply using a word to communicate something about me. If the person I am speaking to is uncomfortable with that, then they’re the uncomfortable party, not me. I stand firm in the knowledge that I am so much more than my diagnosis. Stigma and discrimination might wear me down, but not at the cost of my self worth.

I have to maintain my dignity and control of my communication when I speak about living with schizophrenia. I have learned to make choices about who I share my diagnosis with and why. Some random stranger at the bus stop? Not unless I’m in a situation where assistance might be necessary. In a case like that I would keep the information to a minimum, perhaps just to anchor myself to reality while I feel it drifting away. Has this happened to me? Yes, it has. When I’ve asked strangers for help when I was having a panic attack, I generally received nothing but cold shoulders. Only once did I receive help in a situation like that. I let the person know that I had schizophrenia. They helped me out of the kindness of their heart. To have been worried about wording would not have achieved the goal.

Having a working knowledge of my diagnosis helps me communicate better about it, and I would recommend to anyone with an interest in their mental health to do the same. The more one knows about their disorder, the better. For example, I have learned that immediate short term memory loss, or “working memory” suffers greatly in the mind of a schizophrenic. I recently had to work with three different attorneys for legal counseling, and I told each one that I had schizophrenia, that my working memory falters, and that I would likely need to have them repeat themselves so that I could understand the information they were sharing with me. All three were respectful of my disclosure and treated me accordingly because I trusted them to do so.

When I meet a new person, sharing details about my diagnosis is the last thing on my mind. I want first to get to know them, later to form a bond, and then, if it’s appropriate, tell them about my mental illness. If it’s not going to affect the relationship, then I don’t need to go blabbing it about. But if it’s relevant to the friendship, then of course I open up.

Schizophrenia is a chronic and debilitating genetic disorder. Were it that society understood this simple medical fact, perhaps the storied serial- killer-in-the-hockey-mask stereotype would disappear forever from the fabric of our culture, but that’s not likely to happen any time soon. So it comes down to opening up responsibly and keeping it real with people that we trust—our therapists, doctors, psychiatrists, best friends, family, and loved ones. There is nothing to lose and everything to gain from forming and maintaining solid relationships.

The asthmatic has asthma, the diabetic has diabetes, and the schizophrenic has schizophrenia. Simple terms used to define complex medical diagnoses. The glitch lies in the stigma attached to the word. When mental health is accepted on a level playing field with physical health, then parity can be achieved and stigma can be broken. I take full ownership of the words I use to describe my self and my disorder, two separate issues requiring two distinct descriptions. I have no reason to shy away from speaking openly. We change the course of a thing by discussing it. Sharing our stories is the perfect first step.

4 Comments

  • smileandrelax says:

    It strikes me that how any person chooses to define him or herself is increasingly a matter of personal choice in our post-modern, post-industrial culture, whereas identity and roles are usually more fixed and rigidly defined in primitive or traditional societies. A discussion about *what schizophrenia is* and *whether anyone is schizophrenic* is a complicated discussion for many reasons, but here are three that I think are important: 1) the etymology of the illness is not clearly understood; 2) many conditions may present as psychosis and many persons may be diagnosed with schizophrenia whose symptoms eventually resolve with treatment; and 3) schizophrenia is a term that encapsulates many different kinds of symptoms and issues, and it is the identification and acceptance of treatment for these symptoms that leads to transformation, whether or not one agrees with the clinical diagnosis.

    In my case, the diagnosis I received at 18 was schizoaffective disorder. I began weekly talk therapy at age 20. I had 4 hospitalizations in the earliest years, and was treated with an antipsychotic and antidepressant until the age of 22. Then my doctor switched me to Depakote, and I had fewer relapses, with longer and longer periods of wellness in between episodes. At about age 26, I was re-diagnosed as bipolar since the schizoaffective disorder diagnosis “was ruled out” by my high levels of functioning and achievement (I successfully held jobs and attended college). I viewed both diagnoses as devastating to receive, but mainly focused on recovery in spite of either condition. I stopped weekly talk therapy by age 27. By age 30, I was taken off all meds by my psychiatrist’s recommendation.

    I am now turning 50. I do not require daily meds but still can relapse, and have found that talk therapy with a nurse practicioner who can prescribe is the best way to prevent an episode.

    Do or did I have schizophrenia? Bipolar? Probably not, but my symptoms can easily make it look like I did or do. How much does it matter to me *what I have*? Not a lot! What matters to me is that individuals have easy, rapid access to the treatment modalities they prefer and that offer the the most relief. What matters to me A LOT is that no one internalises a message intrinsic to a diagnosis of schizophrenia – a message of hopelessness. It’s simply not true that people do not recover from early, even repeated, episodes of psychosis. And the diagnosis is often interpreted as a “fait accompli” when it would really take many years of experience to determine what someone’s actual diagnosis and prognosis might be.

    Do I think mental illness is always genetic? No, not any more than I think gender roles are rooted in DNA. I think that human beings are neither strictly biological, nor strictly cultural, entities. Human experience exists in at the meeting point between nature and nurture; healing can proceed both from biochemical and psychosocial interventions. I personally experienced traumatic events prior to the onset of my illness, and so I know from personal experience that trauma can lead to mental illness and that recovery doesn’t always mean lifelong, daily reliance on meds.

    My case is just my own, but it can’t be unique.

  • Colette says:

    I have bipolar disorder and rarely disclose it, even to close friends. I’ve found that if people know, then everything is seen through their vision of mental illness. I’ve found this very hard to dislodge. Coming out of the closet for being a lesbian was nothing compared to disclosing mental illness. This is true even though I am in an excellent remission of symptoms by adherence to my medication.

    • Marc Rios-Klein says:

      I have been saying the same for a long time. It’s easier and more accepted to shout you’re bi-sexual in the middle of the street then it is to shout that you have bipolar disorder! I’m sorry that you have been minimized by ights unfounded concerns and personal discomforts. I do hope you realize it’s truly their issue not yours. Being comfortable with who we are at the core of our identities is critical to happiness & overall well-bring. Glad to hear that all is going well for you these days regarding your stability & what that then allows in self-care.

  • Coach Jeff says:

    Thank you, smileandrelax, for sharing your story. It covers a different perspective and I’m sure there are many who can relate.

    And thank you, Collette, for your honesty. I want to encourage you. Taking the step to trust even your closest friends with a long-hidden secret can be frightening. On the other hand, it may be an opportunity to develop stronger relationships and to dispel any false assumptions others may have fallen into.

    In spite of what we often see in our society, most people are drawn to honesty, and we tend to esteem people who are true to themselves, especially in the face of perceived vulnerabilities. While it can be important to pick appropriate people and circumstances to open up, there is always freedom in the truth being told.

Leave a Reply