Patient Advocacy is Important for Quality Mental Health Care and Quality of Life

One thing about Bipolar disorder is the seeming never ending opportunities to start over. It feels like just as I finally gain some traction in life the surface gets sloped and slippery. This can be a bad thing or a good one. I guess it boils down to attitude. I am looking forward to establishing that good attitude and rebuilding. Maybe I’ll be able to build something comfortable, something a little roomier, a little more permanent. I could use a little economic security, a framework for a bit more emotional security. Who cares about shelter and food.. Where is my next prescription refill coming from?  I won’t know till I get there  I won’t know till I get to working and burn up my present supply. Stress. Restart stress. Stress can dampen a good attitude. I can’t let stress come out on top. My attitude is key in starting over one more time. I think it’s called endurance. I can do this. I can do this.

I had felt uninspired for a couple of months. That may have been due to fear I think. Worried I might get found out and there’d be social repercussions. I’ve had a warm reception from unexpected directions and the happiness and sense of security that brings is surprising. I’m grateful for that as it keeps one hopeful.

Stigma is still going strong. But with a little dedication from a lot of people, it can be stamped out.  How are a lot of people resourced? Through word of mouth believe it or not. It may take time but the growth of a concept will spread. Stigma must go!! Only education rooted in experience will tackle it. Stigma must go.

I’m a bipolar survivor!!
Others can be too.

So, starting over has consisted of a lapse with this blog. I since have moved out of state and started over only to move back and start up again where I left off. I learned in that process that as far as my mental health goes, I am my own best advocate and I need to trust my instincts more. I had gotten laid off in April 2014 as a new contractor took over and I no longer fit the bill. After a year of interviews but no new job, I accepted a relocation offer. My ex-husband decided to leave his lucrative job and move away and my two children wanted to go with him. He offered to move me too so I could be with the kids. Having no prospects, I went.

Before long I found a job that was difficult for me emotionally. I had also missed the opening for the medical insurance sign up. Consequently, I paid out of pocket for my psychiatric care as I had for the year previous while unemployed. I could only afford the care of a nurse practitioner. He was good about helping me find meds I could afford more easily than when I paid for medical insurance. That insurance had been less expensive monthly than one of my $133.33-a-pill prescriptions. Anyway, I was able to cover the cost of my meds. Though the one that had the significant price drop when changed didn’t work as well. I have a seasonal component to my disorder and I hit a wall in the spring. The new medication didn’t take care of my concerns at work in dealing with other emotional people.

At the end of March 2016, I told my nurse practitioner I didn’t feel right and my meds needed changing. Either the dosage or kind of medication. He insisted that I was doing too well as things were and he refused to change my meds or even really listen. Two weeks later I was fired from my job for being emotional with clients, in a manner damaging to the company’s business relationships.

I have learned that unless a medical professional has a history with me, or trusts me, they don’t accept that every April and every October I have a crisis time. I always seem to follow a pattern where I either quit school or work, move or some life event that is self-inflicted. So, I learned after having had a doctor that knew my cycles, I should have been more persistent with the nurse practitioner about how precarious my situation was. There was nobody else to speak up for me. If I don’t speak up for myself in a convincing manner then others assume everything is fine with me. Perhaps I would not have gotten myself fired if my emotions were better tempered.

It’s so important to realize self-advocacy is part of healthy self-care. Through that advocacy one can better receive the help needed. I think I’ve become aware of my tendency to be overbearing, especially when upset. In fact, that’s one main reason I take medication, to tone down. Because of that, often I will work extra hard at being gentle. It can be mistaken as being passive or complying. Sometimes I find it hard to judge if I’m being effective in my communication especially with medical professionals. I have learned to ask more and find out questions in my conversations with them. Questions that help me figure out if they are understanding me.

Ultimately it can still be hit or miss but I’ve made progress in realizing this communication challenge. My current Doctor has a different opinion than I do on some of my concerns but she listens to me. She gives me feedback because I am more persistent and go out of my way to also consider her counsel. The give and take are more balanced in my medical conversations because I now realize the only one who will speak up for me… Is ME.

There have been studies as listed below are three references that scored as many as 80 patients at a time who showed improvement in hope, a perception of health, and personal empowerment after being helped to advocate for their own mental health.  The one question my mom always finished a conversation with (regarding anyone who knew more than she did about anything from medical care to purchasing a car) was “what question do I need to be asking that I haven’t thought of??”  In other words, if you don’t have anyone to help you advocate for yourself always ask at the end of a conversation with your doctor “what question do I need to ask that I haven’t thought of?” You will be very surprised to learn how many people like to help and are willing to volunteer any remaining information that has yet to be addressed in that conversation.  You’ll often end up learning valuable, helpful things.

Don’t be afraid to ask a counselor, therapist, family member, friend to help you write down any questions you may have that you can take to the doctor.  Two heads are better that one when it comes to gathering ideas or concerns to take to the doctor.  Freely tell your trusted person you need help advocating for yourself and they can not only help you think of what to ask or say but they can role play with you to help you rehearse what you want the conversation with the doctor to be like.  I learned in my early 20’s how valid role play can be…  Even the briefest and most informal practice at a conversation can give one the courage to press forward a train of thought when nervous.

I promise it works!

_____________________________________________________________

J. A. Jonikas (&) ! D. D. Grey ! L. A. Razzano !
M. M. Hamilton ! J. A. Cook
Department of Psychiatry, University of Illinois at Chicago,
1601 West Taylor Street, 4th Floor, M/C 912, Chicago,
IL 60612, USA
M. E. Copeland ! C. B. Floyd ! W. B. Hudson
Copeland Center for Wellness and Recovery,
PO Box 6471, Brattleboro, VT 05302, USA

PSYCHIATRIC SERVICES ‘ ps.psychiatryonline.org ‘ February 2009 Vol. 60 No. 2

Medical Care: February 2006 – Volume 44 – Issue 2 – pp 100-109

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