Friday 28 February 2014

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.







4 comments:

  1. Great post Heather! I think this could be a very valuable tool for therapists and "normal" people in our circles.

    ReplyDelete
  2. Thanks so much Stormy! And thanks for being my very first (and most favourite) commenter.

    ReplyDelete
  3. Heather, this is so powerful and well written! All psychiatrists should read this. I have had to deal with doctors like that before telling me the side effects were not real, even when one mid sent me to ER and caused me to temporarily lose my ability to walk or speak. That happened over and over. My current P dock, though, is amazing. He works with his patients as a team to learn more about how they are feeling, and uses the word "concordant" instead of "compliant." It's A completely different power dynamic. I wish you could be yours, too.
    Laurel

    ReplyDelete
  4. thanks so much Laurel. I am sorry you had such awful side effects. so happy you have a great doctor now!!

    ReplyDelete