Negotiating the Mental Illness Maze

Not Knowing

Probably the most difficult time to be a parent is when something is wrong with your child, and you can’t see what is causing their pain. According to The National Alliance on Mental Illness (NAMI), more than four million children and adolescents in America suffer from a mental illness that causes serious disruption to their quality of life as well as their families. 

It’s difficult enough to make the choice to call in the professionals when your child is suffering, and adding to the difficulty is the fact that insurance-managed mental health care can become a nightmare. Despite the fact that mental health professionals are doing constant research to improve mental illness symptoms and locate effective treatments, the remedies often fail to reach those most in need. Mental health workers are required to err on the side of caution.  However, when dealing with suicidal ideation (thinking about suicide), managed care requirements can mean that your child isn’t admitted into a hospital until they have already attempted suicide. According to NAMI statistics, suicide is now the third leading cause of death in youth aged 15 to 24. The problem is real even if the pain is hidden.

To make matters worse, it is estimated that only about 20 percent of children in any given year are properly diagnosed and go on to receive proper psychiatric care.

What Does this Mean for You?

What this means for you as a parent is that you have to do your homework and take up the banner as a tireless advocate of your child. Even if your children are of an autonomous age, say 14 to 18, you need to help them understand that you can be an important advocate for them to get help. Look up residential programs to find the best match for your child, and don’t hesitate to call them. Be realistic. There is good care out there, but the bottom line for many of these programs is money. There is a real possibility that your child may be treated or hospitalized until the insurance coverage runs out, not until she/he is stabilized.

You also may have to wait two to three months just for a diagnostic appointment after you have decided to get help. In one case, a college student told four separate therapists she was suicidal, withdrew from school, went to two emergency rooms and still had to wait months for a psychiatric evaluation because she had not yet made an attempt on her own life. The important thing is that your child will need you not only to be there for them, but to help work through the often difficult circumstances of getting them the help they need.

Insurance Plans, Doctors and Meds, Oh My!

Here are some helpful things that you can do:

Check out your insurance plan carefully so that you know what it covers and for how long. Then call local centers to discover what they do, and how long the average child remains in the facility. Study up on your local psychiatrists, too.  How many are there in your area and what are their specialties? Pediatric Psychiatry is a rare specialty. Your child may need ongoing therapy. The psychiatrist is the diagnostician and the one who can prescribe or change the meds (in the case of adverse reactions).

If meds are prescribed, there are likely to be some adverse reactions at first. Everyone has a unique chemical makeup and mental illness is often connected to chemical imbalances in the brain. The meds are designed to re-balance the chemicals, but some work well for one person while being deadly to the next person. It also takes time to find that out. You should do your homework in this area as well. 

Look up all meds and their possible side effects so that you’ll be able to identify a potential problem immediately. Your child may not self-report well, but if your child becomes suicidal or more suicidal within a month of taking medicine it could be because the meds are making the problem worse. As your child’s advocate, you must stay in contact with the doctor - even if he/she gets irritated with you for doing so.

Advocacy Begins With Empathy

Mental illness makes life hard. If your child was lying in the street with a broken leg or arm, everyone would run to help, but many people are suspicious of mental illness. We say, “She has a broken leg,” but we don’t say, “She has depression”.

Instead, we say she is depressed. Unfortunately, when it comes to mental illness, the diagnosis can become an identity. These stigmas of mental illness are still a reality. When kids are told they “are” something, they often lose hope that they can ever live a normal life. You can help significantly, but making sure that you and your family do not refer to a child in this way.

Your child will have enough trouble from others who don’t understand them; you'll need to learn everything you can and try to put yourself in their shoes. Imagine if your life was like this. Imagine if every morning when you got up you were afraid to leave the house, or every night you couldn’t sleep because of manic rumination. Whatever the landscape of the mental illness you are experiencing with your child, put yourself in that landscape and feel it. You'll be able to help your children so much more if you can fully imagine what their life is like.

This may be your new normal for a while, but if you do your homework, work hard in supporting your child and look for the best help you can find, you can become a real and important asset for your child, often actually preventing lost years and unnecessary suffering.

Written by Heidi Densmore

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Everything in life that we really accept undergoes a change. So suffering must become love. That is the mystery. Katherine Mansfield