i am not my diagnosis

We define ourselves, in part, by the language we use to describe ourselves and others. If I say I am a doctor a certain image comes to mind verses if I say am a bug exterminator. The words we use to describe ourselves and others are powerful and affect every area of our lives from who we choose to love to the kinds of jobs we do. These words determine the types of risks we are willing to take and even how we worship. These words have a major impact on how we see ourselves and how others see us. These words even dictate how we are treated and how we treat others.

I’ve never thought of myself as crazy, but others have. My mental health differences, both before my diagnosis and since, have been the butt of jokes by people I wanted to call friends, by coworkers, past lovers and a few family members. I’ve been called eccentric, touched, weird and strange. These

labels without exception created a sense of aloneness and a sense of somehow being fundamentally different from others… at times even less than others.

That is the insidious power of stigma. It can actually transform how we perceive ourselves, our value, our worth, and our worthiness. So, a concrete example of this? A psychiatrist tells his or her client that they are a schizophrenic and will never be able to hold down a job or live on their own. This has and does happen all the time. The family of this unfortunate person hears this and agrees – yes, you are a schizophrenic and I will be responsible for you for the rest of your life.

This revelation changes the whole dynamic the family. Hopes, dreams, and expectations for the “schizophrenic” change to fit the diagnosis and the prognosis. Suddenly, life is truly limited for the client in the eyes of the family, community, etc. What is the effect on the individual? Well, now they are a schizophrenic and their quality of life is reduced to possibly getting a government check monthly that will not be enough to sustain them. So they will live in poverty and/or have to rely on the resources of their family and community. They themselves may decide based on this new label that meaningful work, a satisfying family life and contributing to their community is no longer an option. What kind of life is that? All based on a label?

Now imagine the psychiatrist had said you have a mental challenge called schizophrenia or your symptoms are consistent with schizophrenia? Then the illness becomes one element of a person’s identity not the all of who and what the person is. We who live with mental illnesses are not our diagnosis. We have a diagnosis. We are people first and the language we use must reflect this reality in order for us to be able to live full and meaningful lives. In order for us to be seen as daughters, fathers, workers, sisters and mothers, we have to use language that encompasses all that we are.

I’m not saying that our diagnosis does not matter or that we are not faced with certain limitations. I am keenly aware of how my illness limits me, however, it does not define me.

There was a time early on when it did define me. I was consumed by the label and what it would mean to others and how my life would be different than I had imagined it would be. So, at the urging of my therapist I spent time with others who had a diagnosis, people who were thriving and living meaningful lives. That gave me the inspiration and courage to look beyond my illness and imagine a life of my choosing. Now, I would never say “I’m schizophrenic” in the same way that some with cancer would never say they are cancer. I now say I have schizophrenia or I live with schizophrenia or I am in recovery from the debilitating symptoms of schizophrenia.

I choose to see myself as someone with options. I can succumb to my symptoms or I can get up everyday and challenge myself to be the best version of myself that I can be. I get to choose to be mother, daughter, sister, peer specialist, child of God, etc.…who happens to have a mental illness. 

nothing about me without me

Without self-determination people with severe mental illness who are in recovery can feel like they are just spinning their wheels. Self-determination in recovery is the process of taking back one’s life, of regaining control over one’s destiny. It’s about making decisions and advocating for the human right to make choices for oneself. Self-determination is the catalyst that moves true recovery from mental illness forward.

Self-determine touches every area of recovery from daily living to medical care. So for me self-determination manifests as a series of lists that I can check off and feel a sense of accomplishment. For example, I have list of day to day activities that have to be taken care of in order for me to get through my day. I start with the cleaning of my home and my personal hygiene. These things have to be in place before I can even think about accomplishing anything else. For people with mental illness this is a challenge because sometimes the symptoms of mental illness interfere with one’s ability to clean the cat box, wash the dishes, take a shower, etc. Sometimes, we have to fight for the sheer will to do these things.

This is where self-determination comes in to play. In these moments we have to use every tool we have to fight for the life we envision for ourselves. We have to use positive self-talk, affirmations, and we sometimes have to negotiate with ourselves. Like, I will get the laundry done and afterwards I will have cup of my favorite herbal tea and zone out in front of the television for 30 minutes.

Self-determination informs our decisions about housing, employment, finances, worship and relationships. We have a right to live in safe and affordable housing. We have a right to participate in meaningful work, have enough money for leisure activities, worship in whatever way we feel comfortable, and have mutually satisfying relationships.

In regards to our medical care, we have a right to person centered treatment. In this arena we get to make critical decisions about which doctors treat us, what treatments we receive, what medications we take, and what is done for us when we are in crisis. So, it’s critically important for us to use our tools like the wellness recovery action plan and advanced directives. These documents outline our wishes for treatment and care from family members, friends and healthcare professionals. They are living documents that that need to be modified as our lives change and transform. They need to transform with the ebb and flow of our daily living.

Many of us remember a time when decisions were made for us. We were told where we could live, what to eat and when, and if we could even leave the hospital after a crisis. Some of us were warehoused in mental institutions for years, subjected to cruelty and mistreatment in nursing homes, and babysat in day programs. Thank God times have changed. We have choices now and we need to take full advantage of those opportunities.

Sounds ideal right? So what could hold us back from living our lives in self-directed way? Well, there is fear. Some of us have lived lives where we were totally dependent on others and/or the government. We have been told by well-intentioned people that we are limited in our opportunities. Some of us have been told by doctors that we will never work again, that it would be irresponsible to have children or to expect companionship. We haves been told by loving family members that life is too stressful for us and we should just sit back and collect a check that will barely cover our living expenses.

And then there is ignorance. Many of us don’t know what’s out there and we are afraid to find out. We all don’t have a ton of experience navigating through this life and we aren’t sure how to do it. This is where peer support really shines. When we see recovery modeled for us by people who struggle in the same way we do we become inspired and hopeful. After all hope is the cornerstone of recovery. With hope, the possibilities are endless.