Mental Illness and Patient Advocacy: Lessons Learned

I am not afraid of mental illness anymore. My years of volunteering on the HelpLine of the National Alliance on Mental Illness (NAMI) eliminated that fear. Everyone benefits if we discuss mental illness openly, so I would like to share what I learned at NAMI.

Let me acknowledge something upfront: I have experienced depression and anxiety since age 18. I am lucky that I have had access to quality health care and treatment options. I wish everyone did. After many years as a journalist in the business press, followed by years of freelance writing and editing, I wanted to put my communication skills to work for an important cause. I had to muster a lot of courage to fill out the NAMI volunteer application. Working on the HelpLine turned out to be among the most positive experiences in my life, and one that filled me with pride and confidence.

HelpLine volunteers are either college or graduate school interns, or people with lived experience, meaning they or a loved one has a mental illness. It was amazing to me to look around the HelpLine office and see people who were living full lives while successfully managing anxiety disorder, major depressive disorder, bipolar disorder, schizophrenia or another mental illness.

Understanding Mental Illness By Listening and Learning:

I learned additional important lessons at NAMI. People who have a mental illness can have loving relationships and rewarding careers. They can be brilliant or passionate about a subject, hobby or cause.

Talking with callers from across the country, I was so impressed by people who have a mental illness and face many tough circumstances in their lives, but they still try to do whatever they can to help themselves. I also was heartened by family members who do not give up on their loved ones even when the person does not cooperate with a treatment plan. The greatest reward came from callers telling me that this was the first time someone really listened and treated them with respect. Which brings me to another lesson I learned at NAMI—we were told not to tell a caller that we understand, because we are not walking in their shoes or in their situation. We can, however, be compassionate and understanding.

People who have a mental illness can have loving relationships and rewarding careers. They can be brilliant or passionate about a subject, hobby, or cause.

Mental health conditions are all disorders of the brain, one of the largest and most important organs in the body. Therefore, mental illnesses are medical illnesses. These diagnoses should be viewed like diabetes, asthma, a thyroid condition or multiple sclerosis.

The Dilemna for Parents of Children and Teens With Mental Illness:

But mental illness is not as well understood by the general public as other medical illnesses. Therefore, when a teenager or young adult receives a psychiatric diagnosis and their parents have never experienced a mental health condition, the parents may be worried or confounded. They don’t know what to expect, whether this will affect the future of their son or daughter, or how to access the necessary care. Worst of all, they may feel as if this condition points to shortcomings in their parenting.

But mental illness is not as well understood by the general public...and parents have who never experienced a mental health condition, may be worried or confounded.

As a mother, I believe that a good parent does not have all the answers, just a willingness to find the best possible resources to help their child. A teenager, young adult or any other family member needs their loved ones to educate themselves about the illness and debunk the stigma. Mental health issues, like any chronic medical condition, present challenges and require sacrifice. No one can just snap out of a mental health condition. The person with the diagnosis must follow the treatment plan and try to practice good self-care to keep symptoms under control and limit the impact on his or her life.

I am a communicator who easily connects with people. I can eliminate your teenager’s or young adult’s reluctance to see a mental health professional or the self-consciousness that they may feel.

It takes responsibility, strength, support from family and friends, and professional treatment to manage a mental illness. Not everyone has access to good health care or family and friends who stand by them, and lacking either of those makes life much harder. We all must make our voices heard about the need for a good public mental health care system and education, so everyone gets the help and support they need.

My Approach as an Independent Patient Advocate:

If you or a loved one is diagnosed with a mental illness, a professional advocate can demystify the process. I am a communicator who easily connects with people. I can eliminate your teenager’s or young adult’s reluctance to see a mental health professional or the self-consciousness that they may feel. I can reduce parental worries by explaining the process, and then coaching and encouraging the young person along the way. For a person of any age, I can identify the different types of mental health care professionals and their roles; explain the therapeutic process; research diagnoses, treatment options and medications; and help find professionals who are the right fit for the client. I also can tell you what questions should be asked.

The greatest takeaway from NAMI is that even with the most serious mental health condition, there is always hope for those who reach out for help.

If hiring an independent advocate is not feasible, the Patient Access Network Foundation can assist underinsured patients, and The Patient Advocate Foundation can offer insured patients some financial assistance.