Friday, August 19, 2011

Who Is In Control of My Recovery?

Are we listening? Are we listening to the one in control of recovery? Who is in control of recovery? Is it our doctors? Our family members and friends?

For a brief time, I did not have choices in my recovery. My life was limited by the state system in jail. In fact, I had my choice to deny medication taken from me. I was court-ordered to medication compliance, which was encouraged by my family. I am thankful my family advocated for medication compliance because it ultimately saved my life. During the time I was not well, I recognized this only after I was medicated and educated on my health.

When I was not well four years ago, I believed I was a victim of conspiracy. I thought someone in my family were playing a prank and took me to an enclosed facility with routines not of my own (jail). I believed others were against me and working together to poison me and to spy on me; I felt my life was in danger, and that I had reason to feel uneasy and suspicious. As a result, I did not speak much, shower, or eat at all. I feared someone tampered with my soap and believed it would burn my skin. All the while I thought I was okay, and did not take medication.

After refusing medication one day a group of guards along with a nurse barged into my space, held me down to the bed and gave me a shot. I refused to take medication several times after that and we went through the forced medication routine regularly. Eventually, I complied with the nurse's request and took the pills because I did not want to receive a shot. The nurses did not tell me why I was forced to take the pills, what was my mental health condition, or what the medication was.

Soon I felt some uncomfortable side effects to these pills and did not want to take them. The nurses knew why I did not want to take the medication, but bribed me with candy and beverages to take them anyway. Now, I wonder why didn't the nurses advocate for me and take my concerns to my doctor, or maybe they did with no further instruction, I don't know.

The pills interfered with my sleep, made me feel excited and jittery. I complained to my doctor with no solution. Eventually, I found an alternative route to have my concerns met. I talked to another doctor after my doctor was off shift. This helped, the other doctor gave me another medication to relieve the side effects.

One day, I asked the nurse for information on my medication. And I learned of the type of medication I was on and additional information. While reading a magazine I came across an advertisement for medication. It listed similar experiences as symptoms and I took the advertisement to my doctor to request a medication change. My doctor said no because it was not in my best interest to switch medication for several reasons including stabilization. I felt like I was not being heard and did not have any control over my recovery.

This feeling of lack of control in my recovery changed when I went to the state hospital. For the first time a doctor asked me what I wanted. They gave me options and I made a choice, which we agreed upon. Moreover, they suggested I get off the medication my jail doctor put me on because of my family's medical history. I felt like my opinion mattered and that I was in control of my recovery.

Since that hospital visit I continue to play an active role in my recovery. After I was released from the correctional facility and institution I joined a county program that offered housing among other services. My mother enabled me to make the decision to move into a group home, commonly called independent living, despite her concerns. I was in control of my recovery and life.

My treatment team enabled me to go back to college, because it was my goal. When I moved back to Atlanta with family, they suggested activities, but did not force me to do anything I was not ready for. Eventually, I got frustrated with limited social support from the community and made the decision to go to the support groups offered at my treatment center to meet people and to make friends.

I am in control of my recovery and life. I say that because treatment teams, family, and others enabled me to have options and to make a final decision that I wanted and needed at that moment in my life. Now, I live alone, I am attending college, and I lead support groups to give back to my peers and the mental health community.

Self-direction in a person's life is essential to recovery. I experienced empowerment by being able to make decisions, and I want my peers to have the option to do the same. I am an advocate for my peers by sharing my personal recovery story, and sharing resources and information to reduce stigma.

This week I completed the Georgia Certified Peer Specialist (CPS) training. The priority of a CPS is to give the individual living with a diagnosis a voice. As a peer, someone also living with a mental health diagnosis, a CPS listens to the individual and advocates for them to their treatment team. The role of a CPS is a growing movement that is established in several states across the United States.

Finally, Embracing My Mind, Inc., a mental health organization that offers peer support will have education-based recovery support groups open to the public at the East Point Library in East Point, Georgia starting Thursday, September 8, 2011. Please go to the website click here for schedule information and additional details. The objective of Embracing My Mind, Inc. is to reduce stigma, change perceptions, and to promote awareness and hope.

To learn more information about schizophrenia visit Embracing My Mind, Inc., National Alliance on Mental Illness (NAMI), Choices in Recovery, and Schizophrenia Society of Nova Scotia (Canada).


Jonathan Harnisch said...

I, too, have Sz and am currently stabilized. I also blog @ and host a self-help/inspirational podcast called The Real Me with Jonathan Harnisch on iTunes about Sz. I'd seen the film you were in: Living with Schizophrenia: A Call for Hope, and found it a gem, especially for those who may not have much education about the illness. I can relate, tremendously so, with your experiences, especially by "not being heard," and that we are in control of our recovery ourselves, overall... Keep the hope alive! We're all in this together! -JH

Anonymous said...

I've been diagnosed with schizo- as well. Being paranoid, afraid and cautious has led to several unjust experiences at the hands of "professionals". I know NOW I'm in control of my recovery but wish whole heartedly to advocate for others with the schizo- dx -- where to start? I've seen far too many ppl ignored. Delusions...whether it can even be called as such...are traumatic. I had amnesia at a young age over a very horrible memory. Top those with medication for symptoms in a terrified can one call it Paranoid? It's REAL! In that the doctors , nurses and other staff take matters into their own hands and ignore the suffering the patient is going through. Meds didn't help me...not for years. It took an act of God to keep me alive. Well, thanks, just venting and looking for one who could relate.
S.A.D. Sammy :)

Feminist Voice with Disabilities said...

Ashley, my journey was much like yours. I lived in a group home after being diagnosed. Then I move into an apartment, and now I am in college. I just transferred from a community college to a university. I'm involved with NAMI, and am a peer advocate too. I speak publicly about my illness to educate others. I am definitely in control of my own recovery. I seek treatment as I need treatment, but I know that I must watch for symptoms, and I must be on guard for them, and I must take action to address them when they occur. That means, the ball is in my court.

Unknown said...

Hi Ashley! I recently became an active member of Blogger and stumbled upon your blog. It is wonderful! I am a Licensed Mental Health Counselor and wholeheartly believe in the client (not sure if you like this word and I apologize if you do not) being an active member of his or her therapy. Establishing goals to advance independence and quality of life is so important and I am thrilled you found your own place and are such a strong support for those who struggle with Schizophrenia.

Upon reading, it troubled me greatly that you were not given choices about your treatment and medication. Medication education, including possible side effects is essential for all.

I promise I will continue to truly listen and empathize with clients having them guide their recovery, choose their goals and dreams. It is always about the client, not the therapist/doctor. I am happy to say that some of my clients went back to work, school and into independent housing. It is awesome to see! I think sometimes people forget that a person with a mental illness is a person first and foremost.

Thank you for your blog! All the best to you. I will be reading.

Sincerely, Michelle.

Unknown said...

Your story is so powerful and sadly more common than it ought to be. Your tenacity and courage are so incredibly empowering. I was dx with bipolar disorder in the late 1990's. I now work in the mental health field and am trying to learn more about Schizophrenia and other mental health issues to better understand the consumers that I interact with. You are so right about recovery being in our own hands and how much a system can help or harm a person who is in any stage of recovery. Currently I am working on developing a life skills group at the wellness and resource center where I work. I am learning much from your blog and your organization about what information could be potentially helpful for the members of our group. But what I like most about what I am reading here is the encouragement and empowerment that I hear in the voice of your writing. Thanks so much for all your effort. You are obviously making a big difference in your community and far beyond!

Jenna said...

You are an amazing inspiration! Thank you for sharing your life with us and for inspiring others.

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