I Am Not My Mental Illness! Or Am I?

As a person who lives with mental illness (schizophrenia, bipolar 1) it seems I spend an inordinate amount of time emphasizing to people that I am not my illness. When people discover that I live with a mental health diagnosis it seems they thereafter incessantly analyze and pick apart all I say and do looking for signs of or glimpses of madness. At times I want to grab people by the shoulders look them in the eye and say not every loud laugh is mania, not every passionate emotion indicates instability, not every tear is depression, and not every eccentric thought is psychosis.

Since I received my first mental illness diagnosis at age 20, well meaning, caring mental health professionals (doctors, social workers, psychologists, support workers, nurses, counsellors) have been telling me emphatically, "you are not your illness!" I embraced this philosophy and ran with it. Hell no I am not my illness I shouted to the world...well at least until a few days ago.  You are probably wondering what changed. I try to advocate for mental health in real life and on social media. I try to educate, inform and provide information about mental health issues. I readily share my observations and experiences of living with mental illness.

A few weeks ago in the course of doing what I do, a lovely woman who works as a life coach challenged me to talk more about me, not my illness but the parts of me that are not illness. She said "talk about Heather, not illness." I thought this was a fantastic idea and thought it would make a great blog post. I would list the myriad things that are just me not illness...because I am not my illness!...right?

I was so excited about this and promptly sat down to list all the things that were me and all the things that were illness. I ran into a huge roadblock. After over an hour of thought and deliberation I realized I could not do this. I could not separate Heather from illness. I found it impossible to tease out what was illness and what was me. I was frustrated that I could not do this but then had an epiphany...I have lived with symptoms of mental illness since childhood. I also have lived with a mental illness diagnosis for many more years than I lived without one. This is not good or bad, it just is. I realized that who I am is very much intertwined and enmeshed with my illness. In many ways yes I am my illness.

What I really should be shouting from the rooftops and what the professionals should have been telling me is that  I am not the stereotype of my illness, not what stigma leads you to believe I am, I am not what the public perception of mental illness is and that I am not nearly as different from you as you might want to believe.
I think I am an empathetic person. I help others to the best of my ability. I am a caring person. I embrace and support diversity and unique people. I have a strong need to fight for fairness and equality. I am understanding and compassionate. This is Heather. It is not mental illness, however, these qualities have been shaped by my experiences. I truly believe that mental illness and experience has gifted me with these qualities in abundance. I believe they developed from my struggles. The biggest gift my illness has given me is my sense of humour, ability to not take myself too seriously and to laugh at my illness and myself. I am so appreciative of this gift. I cannot imagine a life without laughter.

As far as my bad qualities go, I am often impatient, angry, frustrated, unhappy, impulsive and short tempered. These can be part of my illness and may be exacerbated by illness but they are often all me and part of being human. It is not always possible to separate me from the illness.

At times I am ensconced in my illness. I struggle with hallucinations, delusions, depression and mania. These are symptoms of my illness but they are also an integral part of me and who I am because I live intimately with them much of the time. These symptoms are recurring and life-long. Symptoms can last a few days or up to a year. They are as much a part of me as the good qualities and bad qualities. I hereby claim the good and the bad of my illness as part of me. In part yes, I am my illness, or more accurately my illness is an integral part of me.

There has been a backlash recently about labelling or diagnosing people. Many people I know (though none who live with schizophrenia) are against the use of the word schizophrenic. The word schizophrenic means living with schizophrenia. It is no worse than diabetic, asthmatic etc. It describes a disease process and no more. We need to work on public perception of what the word schizophrenic means. It is okay to be schizophrenic the same way it is okay to be diabetic. It is okay to have mental illness and is okay to become at peace with your illness and recognize how it has shaped and contributed to your life and experiences.

What I am not, is the stereotypes and stigma of my illness. I am not and have never been lazy, criminal, sociopathic, multiple personality, homicidal, stupid, scary or a danger to others. I am capable when well of functioning and living on my own and being a productive member of society.
I firmly believe that instead of wasting effort teasing out what is me and what is illness. (the good, the bad, the ugly, the illness...it is all me), we need to teach society how to tease out what is stigma and what is fact, what is the person and what is the stereotype.

To those who tell me I am not my illness, I tell you I am not my stereotype.
This blog post marks the first time in many months that I was capable of writing coherently. If you like this post it was all me...if it is terrible it is the illness :-P

STUFF I WANT MY PSYCHIATRIST TO KNOW...

I want you to know you should ask me what results I would like from treatment and what my goals are before you tell me what your goals are. One doctor told me that his goal, his only job, was to keep me out of the hospital at all costs. My heart sank when he said that and I felt so defeated. See my goals for treatment include rejoining, society, my friends, my family, school, the workforce. I want to be able to laugh again. I want to get reacquainted with that person I used to be and used to enjoy being. I want to feel emotions. I don't want to be so over-medicated or burdened by side effects that I have no quality of life. I want to be able to have realistic hopes and dreams. I want to be strong. I want to be independent. I want the kinds of things you want. I want so much more than your meagre goal of keeping me out of the hospital.

I want you to know that I think you are a good doctor. I want you to know that I appreciate what you do. When I am able and when I am well I try to make a point of telling you that. I don't tell you that often enough, so how do you know you are a good doctor? You know because you have at times had me locked up against my will and I came back to you when I was released. You know because I listen to what you tell me, I trust you, and I follow your advice even when my mind is telling me you can't be trusted, that you are poisoning me and because I take the medication you prescribe even though it gives me horrendous side effects.

I want you to remember that you often see me only at my worst. I am more than a schizophrenic, a bipolar, a disease, an illness. I am a daughter, a sister, a cousin, a friend, a neighbour, a coworker, a mother, a real person not just a patient or a label. I need you to remember I have an illness not a character flaw.

I want you to know I need to see you as human. My illness often robs me of my dignity and my self esteem. I am often ashamed of the things my illness causes me to think, to say and do. I tell you my darkest secrets, my most embarrassing moments, my hopes and fears. I know it isn't professional for you to tell me about your private life but do something to show me you are human; smile at me when I enter your office, come out from behind that giant desk, tell me you got a puppy, ask me how my nephew is doing, tell me a stupid joke. Please do something, anything that will put me a bit at ease and make it easier for me to tell you about my illness.

I want you to know that I see how frustrated you get when you try so hard to help me but I still don't get better. I know how very frustrated you are that yet another medication did not reduce my symptoms. I know how frustrated you are because no matter how frustrated you are by not seeing me get better, I am a hundred times more frustrated that one year has gone by and I have had two hospitalizations and ten different medications and not only am I still so very sick but I feel like I failed you by not getting better.

It must be tempting for you to pity me or see me as weak because of my illness. I get suicidal, I lose all hope, I hear voices that call me horrible names and taunt me constantly, I see people that are not there, I cannot trust my own senses, I have lost dignity, respect, jobs, friends, family. I have delusions, paranoia, I think the FBI is after me. I think people are talking about me. I think the neighbour is trying to steal my thoughts. I live in poverty. I spend weeks and months at a time hospitalized against my will. I need you to know I am not weak, All of these things are my reality. I live this every day and I have survived this long. I am probably one of the strongest people you will ever meet.

I want you to know you have to be patient when I question you about the medication you prescribe. I need you to know that because I have concerns about the medication it does not mean that I am non-compliant or anti-medication. What it really means is that when I picked up my last prescription (perphenazine) from the pharmacy it came with a sheet that listed the following as possible side effects; twitching or uncontrollable movements, tremor, drooling, trouble swallowing, trouble with balance and walking, feeling restless, jittery, agitated, confusion, unusual thoughts and behaviour, feeling like you might pass out, seizures, convulsions, decreased vision, tunnel vision, watery eyes, light sensitivity, nausea, stomach pain, skin rash, jaundice, high fever, stiff muscles, sweating, rapid breathing, heartbeat irregularities, easy bruising, bleeding, flu symptoms, joint pain, swelling, swollen glands, muscle aches, chest pain, vomiting, slow heart rate, weak pulse, fainting, dizziness, drowsiness, anxiety, blurred vision, headache, breast swelling, breast discharge, mental problems, weight gain, impotence, itching, trouble reaching orgasm, abnormally low blood pressure, dry mouth, stuffy nose, incomplete or infrequent bowel movements, difficult or painful urination, contact dermatitis, continued painful erection, low body temperature, decreased white blood cells, muscle spasms. At the end of this lengthy list it actually stated "This is not a complete list of side effects and others may occur." Really. There could possibly be more. I want you to know if I don't  question you about this then I really am crazy. 

I want you to know that I often wait 3 months or more to get an appointment with you and often sit in your waiting room for up to two hours at each visit. After all that please don't rush me out the door. Please take the time to listen to my concerns and answer all my questions.

I want you to know that when you tell me I don't understand mental illness because I am not a doctor, I want to scream that yes, you went to the University of Toronto but I went to the University of I have lived this shit every day for 20 years.


Most of all I want you to know that you are a very powerful person. I always believe you. I believe you when you tell me I can do something, but please remember I also  believe you when you tell me I can't do something.