Navigating the inequities of mental health system

By Jenny Westberg, Contributing Columnist

Keaton Otis died on May 12. We know police shot at him 32 times. We know the other victim, Officer Christopher Burley, and we know he’ll survive. We know so much about a few moments. Now, thanks to the courage of Keaton’s parents, Felesia and Joseph Otis, we’ve heard about other moments in this bright, creative young man’s life — and the illness that may have led to his tragic death at only 25.

Keaton had a mood disorder. According to reports, a nurse practitioner consulted by the Otis family said he likely had schizoaffective disorder. And he needed help. But Keaton Otis wasn’t interested in getting treatment, and his parents were desperate. Instead he shut himself away from friends and family. He was convinced that people were plotting against him. He stopped eating and lost 50 pounds. Many families in our community have faced this situation. The U.S. Surgeon General reported one in five people have a diagnosable mental illness during the course of one year. We all know someone who’s dealing with mental illness or addiction. But what if it’s your son or daughter in crisis?

It’s heartbreaking to watch a family member deteriorate as they tell you they don’t need or want treatment. How do you help?  How do you keep your family strong? How do you take care of your own needs? What if, like Keaton, your child is an adult, with the legal right to make their own decisions — even ones that may not be in their interests?

African Americans experience additional barriers in the mental health system. A Portland family might start out looking for a black psychiatrist or therapist, only to find there just aren’t any available.  When you start trying to find treatment, you may encounter prejudices built into the health care system. Just how many African Americans have schizophrenia?  Science says prevalence is relatively equal regardless of color.  But doctors diagnose African Americans with schizophrenia so often author Dr. Jonathan Metzl of the University of Michigan says it’s become a “black disease.”

It’s not that schizophrenia is increasing among African Americans, it’s just that psychiatrists tend to label more black people that way. Two people, one black, one white, experiencing the same symptoms, can walk into the same clinic, and walk out with completely different labels. The white person is more often “bipolar.” The black person is more likely to be “schizophrenic.”

Navigating the inequities of the mental health system is the last thing on your mind if you’re watching your kid fall apart. You just want help. But how do you get it? When you find it, how do you encourage your kid to go? What happens when they don’t follow the clinician’s instructions?

Here’s the tough news. There is no straightforward cure; no single pill, prescription, or treatment; no unique menu of remedies for mental illness. Each family is different. Each path to wellness is completely original; think of recovery as discovery. But here are five basic tips to get you started.

1. Overall and most important is to anticipate crisis. Too often we get frantic calls from families seeking impossible or devastating interventions. Delay and denial are the enemy. Most crisis can be averted with careful thought and planning. If you are worried about someone in your home who has or may have a diagnosis of mental illness, do not wait until a crisis drives you to action.  Prepare yourself. Be responsible, be alert, be aware, and anticipate crisis before it happens.

2. Learn everything you can about your son or daughter’s condition. Find out what medications might be recommended, and know what side effects they’re likely to cause. Read books by other parents — you’ll draw strength from their experiences, and you’ll feel less like you’re the only one dealing with this problem. Also, read books by people who have experienced what your son or daughter is going through. Often, these have a welcome message of hope.

Start here:

— “The Essential Guide to Psychiatric Drugs,” by Jack M. Gorman (2007)

— “When Someone You Love Has a Mental Illness,” by Rebecca Woolis (1992)

— “Living Well With Depression and Bipolar Disorder: What Your Doctor

Doesn’t Tell You… That You Need to Know,” by John McManamy (2006)

— “Getting Your Life Back Together When You Have Schizophrenia,” by

Roberta Temes, Ph.D. (2002)

3. Seek fellowship and peer support for yourself. Your job as a parent just got tougher. Talking with other parents going through the same thing can enlarge your perspective. You will realize you’re not alone. They really understand what it’s like, and they can share “insider” advice on the mental health system. Start here:

— Al-Anon. If your child has a problem with drugs or alcohol, you can clearly see the effects in their life. But what about the effects in your own life? Al-Anon doesn’t tell you how to fix your loved one’s problems. But it does offer a way of living that benefits the entire family. Find a meeting by calling 503-292-1333.

— National Alliance on Mental Illness offers the Family-to-Family program, a free, substantial, 12-week educational program designed for family members. To attend call 503-203-3326.

— Reach out to friends, family members, colleagues, and church members. At first it might be difficult to talk about mental illness in your life, but chances are you know many people who have experienced some of the exact same things. Be surprised.

Caring for an ill family member is a marathon, not a sprint. You’re in it for the long haul. There will not be easy solutions. Get yourself ready to not give up.

4. Find help. There are many sources for help for persons with mental illness, including case managers, psychologists, therapists, counselors, nurse practitioners, psychiatrists, and specialists in alternative medicine. Some may have a part of the solution. None should be depended on for the whole solution.  Remember it’s your son or daughter’s treatment — not yours — so the methodology should suit them, not you. They will be in the office with the provider, and their preferences need to have top priority.

Consult your child’s doctor or treatment provider, if they have one. Because of confidentiality they cannot give you specific information, but they can listen to your concerns and advise you in a general way. Keep a journal with all actions taken, dates, names, phone numbers, e-mail addresses associated with your loved one. As time goes on this journal will become an essential tool. Here’s how mental illness is completely different than all other illness. When a crisis occurs in other illnesses, everyone rallies around, doctors get intrigued, and services enlarge and expand. For mental illness the opposite is true. For persons in a mental health crisis, services are scarce, friends recoil, doctors shrug, pastors are baffled. You can get caught up in the injustice of it all — or rise above and prepare for the next cycle.

If your son or daughter agrees to see a clinician, you may breathe a sigh of relief. But it doesn’t end there. Keep track in your journal. Follow up. Does this treatment method seem to be working? Ask your child: “Do you think it’s helpful?” And if your child quits, it’s not failure. It’s not the end of the road. There are other options for care. Offer, don’t push. Kids get rebellious, and you don’t want them to give up on the whole idea of treatment.

5. Never lose sight of the beauty and goodness in your child. You knew how special your child was at the moment of birth. Mental illness doesn’t take that away.  Even though it may be hard to see sometimes, it’s still there. Your child may have feelings of shame or think you’re disappointed. Now more than ever, your kid needs your love.

3 responses to “Navigating the inequities of mental health system

  1. Excellent article! I just linked this blog and article to a similar blog in KY. Kentuckians are struggling with the same issues you write about. I am a family member trying to make a difference in the lives of those that “have the right to say no” to help & treatment yet often end up paying the price in prison or death. Please write me for more info as I want your permission to quote you and to forward this info. ggb

  2. Thank you admin
    The health is always in the forefront of children’s health. all to our kids

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