Diagnosis

How to Communicate with Your Providers

Christina Bruni Health Guide February 23, 2013
  • In New York City years ago: the SYMS clothing store TV commercial proudly boasted: "An educated consumer is our best customer."

     

    People diagnosed with mental health conditions need to educate ourselves about the latest best practices treatments and array of lifestyle options available to us.  Like with shopping for any other goods and services, we need to assert ourselves with our providers.

     

    First of all: we need to assemble a treatment team.  This is a psychiatrist, possibly a cognitive behavior or other therapist, friends we can count on in times of joy and sorrow for support and companionship, and hopefully family members.  The treatment team can also ideally include a mentor.

     

    How do you go about creating a treatment team?  You can find a cognitive therapist at the Association for Behavioral and Cognitive Therapies Web site.  Or log on to the APA psychologist locator or the GoodTherapy provider directory.  A top psychiatrist can be found using the CastleConnolly directory online as well.

     

    I found my current doctor because a woman I used to be friends with recommended him to me.  Word-of-mouth is a viable option for you too.

     

    Dial NAMI at (800) 950-NAMI (6264) to get the name and phone number of the local chapter in your city or town that hosts peer support group meetings and the Peer-to-Peer education course.

     

    I'm going to school you in this: ask questions to determine if the options presented to you in terms of treatment are the best solutions for your needs at this time.

     

    My own experiences shortly after I was diagnosed are illuminating.

     

    After I got out of the hospital in the fall of 1987, I attended a day program for a year.  Then I was shunted into another day program where the clients were life-long chair warmers.  I wanted to get a full-time job and live independently, yet was placed at the bottom level of the five groups.  I asked my counselor why and she told me it was because I was quiet.

     

    Every day, I was forced to sit in groups with people who were deemed incapable of even having daily group therapy.  The group therapy was reserved for the higher levels, yet I soon found out the topics in those groups focused on things like "Why was the train late today?"

     

    I didn't know what else I could do so I played the game, to get out of there as soon as I could, to be trained so I could become a word processor.

     

    Years later, I look back in horror at that time.  I was intelligent: I graduated college with a 3.66 GPA out of a 4.0 so I graduated with honors.  I literally lost my voice because no one would listen to me.  My quiet nature was pathologized as aberrant.

     

    After living through this experience, I recommend you learn to kick ass verbally to defend yourself.  The only other time I experienced subpar treatment was when I saw a doctor for five years after my first psychiatrist died.

     

    Dr. Number Two was creepy.  He wanted me to switch to an atypical because of the risk of tardive dyskinesia from an older drug.  Yet I had no symptoms so kept telling him "No, no, no."  His reason for making the switch? "Everybody's doing it."  I thought this was a ridiculous excuse for gaining upwards of 100 lbs by taking an atypical.  I left his office and didn't go back because of this and also because he tried to get me to be his girlfriend.

  •  

    Or so it seemed he was angling for that, because his last words at every visit were "Are you in a relationship?"  I found it creepy that this was his ongoing criteria for how well I was doing: a woman with a Masters degree and a professional career.

     

    The lesson to learn from this: if you can't be honest with your providers, it will jeopardize your treatment.  All during those five years, I didn't reveal once that I had racing thoughts at night and couldn't fall asleep.

     

    After I met Dr. Altman, I knew on the first intake I could trust him so I told him the truth.  He told me: "Sometimes we all have a hard night" and raised the Stelazine from 5 mg to 10 mg.

     

    In April of 2007, I called him up one night and told him I had to come in the next day and he accommodated me.  Dr. Altman immediately switched me to Geodon, one of the weight-neutral atypicals if you're so lucky to be healed by it.  Geodon is not effective for a lot of people yet it was like a miracle drug for me.

     

    I will refer you to two SharePosts I wrote years ago: Setting Treatment Goals and Measuring Recovery Gains, for a specific six-step process for dialoging with your doctor or therapist. 

     

    I recommend you write down your questions on large index cards and bring the cards to the visit and ask your questions up front not when you're turning the doorknob to leave.  Doctors universally dread such "doorknob questions" as they're known in the field.

     

    My tactic is to write down on an index card and number the points I want to bring up with my doctor at the next session.  You have to feel your provider will listen to you and give you enough time to talk even though you might be limited to 15 or 20 minutes. 

     

    I doubt most people can verbally itemize in a step-by-step way what they want to talk about so this is where using the index cards comes in handy.  I have a near-photographic memory so can remember what I wrote down yet I don't expect others to be this organized.

     

    Ask why a provider recommends one treatment over another.  Read the Top Ten Questions to Ask Your Doctor.  I also recommend giving your parents, spouse or another trusted adult permission to talk to your doctor about your treatment if it becomes necessary. 

     

    This person might observe or be aware of symptoms you're having.  He or she is not to monopolize your doctor as a therapist.  This person can also ring the NAMI number above to get the information about a family support group.

     

    In the end, I succeeded despite my time in the second day program.  Yet it's not an experience I would wish on any other peer.

     

    All of us need to become active participants in our own health and take responsibility for our recovery.  We have the right to be informed consumers and arm ourselves with the knowledge that allows us to make the right decisions and choices.

     

    The SYMS clothing store got it right: an educated consumer is the best customer.

     

    In the coming weeks I will detail more recovery options that are available.  Stay tuned.