I will recommend a reading that may share some factors and answers to these questions, I will also share my experiences with doctors, and what I've learned in order to support others on their journey to maintaining recovery.
Recently, I read an article about mental health disparities on African Americans in California. To read that article click here. This article particularly interested me because the study took place in California- where I was also diagnosed.
One of the experts who commented on this concern, Dr. Annelle Primm, who I've also had the pleasure of sitting on a panel discussion with in last year's NABJ event in Washington, D.C., said "due to lack of cultural understanding," African American patients are being misdiagnosed.
However, many individuals- not only African Americans- living a mental health diagnosis are being misdiagnosed. Yes, cultural competence may play a role for African Americans, but also, honesty about symptoms and other concerns with one's doctor could be a contributing factor to inadequate information leading to misdiagnosis for peers living with mental health.
Reflecting on my early mental health professional relationships- I was very uncomfortable with my first doctor. I had few doctors before receiving an official diagnosis of schizophrenia. I remember having racing thoughts and hearing voices while the doctor asked me several questions including whether I heard voices or not. Because I didn't feel I could trust him, I lied and said I did not hear voices and tried questioning him and changing the topic.
The next doctor I came into contact with, I felt like they did not understand me, and did not listen to my cry for help when I cooperated with them by complaining about side effects. The side effects of my medication made me feel jittery or excited and the need to stay in consistent motion, even when I was tired, I stayed awake and kicked my legs to get relief. I tried a few other medications and experienced more side effects.
As a result, I brought my concern to another doctor during another shift to get the attention I needed. The doctor that did not listen to my desire for help with medication frustrated me, and shut me down. I did not want to interact with her nor express myself anymore... I've had good and bad experiences with doctors, but over the process of receiving treatment I've learned it is best to be honest with my doctor and to continue to seek additional help if my needs are not being met.
I think the African American community living with mental health are not receiving the right medical support because of lack of understanding. This lack of understanding can appear through the belief that mental illness is evidence of lack of faith, which is not true. Mental illness is not a character flaw or spiritual battle. Therefore, it is imperative individuals living with mental health concerns seek help from mental health professionals, and also faith-based communities as an additional resource not sole medical guidance and support.
Evidence of lack of understanding includes barriers to care outlined in the NAMI (National Alliance on Mental Illness) President's New Freedom Commission on Mental Health (click here for NAMI reference)- mistrust and fear of treatment. Many individuals do not understand how mental health medication works. Although I am still learning the process of different medications, I do know that treatment requires a few weeks, before taking an effect on one's relief, wellness, and improvement- for some that is a short few weeks, and for others it is several long weeks.
Another important fact is individuals on medication can still relapse despite having a regular medication regimen, because of triggers such as incidents, places, people, or stress, which could may make symptoms worse. It is critical that patients share their medical history and other medications and herbs, they are taking because this can dictate which medication the doctor wants to give, or can prescribe given accurate information.
Finally, some concerns are shared by all populations including: poor quality of care, and lack of access to mental health treatment. I've heard from peers their frustration with health care professionals because they are not listening nor doing their job well. A lot of peers feel like they are not treated uniquely in order to best meet their needs.
If I was the patient with concerns such as these I would learn as much as I can about my diagnosis. I would want a family member or a peer mentor such as a Certified Peer Specialist, to attend my doctor appointments with me so that they can advocate for me.
Also, I would go to appointments with a list of questions and make sure I received the information I needed with understanding- not all the unnecessary medical jargon. One of my questions may be about additional resources like programs that discount or take on the cost of my medication, and peer support activities and programs, to help reduce isolation and to create a support network.
Were these tips helpful to you? What other questions would you ask your doctor, if newly diagnosed, during a visit?
To learn more about schizophrenia visit the NAMI, Embracing My Mind, Inc., Choices in Recovery, and Schizophrenia Society of Nova Scotia (Canada).