Eight things NOT to say to a parent whose child lives with serious mental illness and how to respond if you’re THAT parent.

ConversationBubbles2Plus, how to express genuine support.

 

“What parent doesn’t feel their child’s pain?”

This is what Esme, a contributor / parent to Behind The Wall asks. As the saying goes, “We are only as happy as our most unhappy child.” Parents take on their child’s pain and usually wish they could take it all in their stead. Our parental vigilance is heightened when our child is sick; we fiercely monitor how he is treated physically and psychologically.

This is the agonizing reality for parents of chronically sick children: witnessing the suffering that accompanies an illness. In the case of mental illness, much of this pain derives from societal judgment. With that in mind, imagine saying to the parent of a child who lives with developmental disabilities, “Boy, your son is really, really dumb! Ha!” No one would ever say such a thing. But Annie, a contributor to our Behind The Wall project, tells us that the parent of a boy who went through school with her son once said, “I saw your son on the street downtown. Boy! What a wacko he is!”

As if Annie didn’t know her son has some challenges. Thank you, but yes, she knows his behaviors are sometimes a little odd.

Now, you may be thinking that the person who said such a thing is a clueless person who, if you were to meet, anyone would recognize her as misguided. But in fact, she is a respected body/mind health instructor.

As horrific as this comment may seem, sadly it is not an uncommon experience for parents of adults living with serious mental illness (SMI). But parents like Annie and Esme become accustomed to a society that really doesn’t understand. Esme’s daughter lives with bipolar disorder and borderline personality disorder. Even after being told her daughter was no longer welcome at a friend’s home, Esme is circumspect. Regarding how others perceive her daughter and judge her parenting Esme says, “I’m a private person and also the type of person who doesn’t really care what other people think. It’s not their life and good for them they don’t have these problems. That’s the way it is.”

Here’s a guideline  one may find helpful: many parents describe the grief associated with having a child with persistent mental illness as similar to experiencing a death. But without the casseroles and flowers. 

It is difficult to understand the reality of SMI. Those of us who have a loved one who lives with chronic mental illness all agree that others should be grateful not to know about the challenges brain disorders inflict on both the ill person and his immediate advocates and caregivers. Even non-nuclear family members who don’t live with the ill person don’t really get it. Showing understanding to a parent of a child with SMI does require some degree of delicacy, the same goes for addressing a parent whose child has died or has any other challenging disease. Here’s a guideline  one may find helpful: many parents describe the grief associated with having a child with persistent mental illness as similar to experiencing a death. But without the casseroles and flowers. There is nothing you or anyone can say to make it better, so don’t try. But expressing compassion without judgment, is the gesture of support that is always valued.

Here are some common misguided comments similar to those parents often hear, and how to respond. Even in the tender place that parents reside, responding with honesty can assert one not as victim, but as caregiver and advocate as well as messenger.

1. Be glad it’s only bipolar and not schizophrenia

Response:  Both bipolar disorder and schizophrenia are serious brain disorders and both are difficult for the person living with the illness.

2. She’s just a drunk!

Response:  Yes, she has a dual diagnosis, which means she has a diagnosed mental illness and uses substances. She tends to medicate her depression with alcohol and it has become alcohol abuse, for which she is getting help. 

3. Aren’t you afraid that he’ll hurt you? Aren’t you afraid to live with him?

Response:  Not all people who live with mental illness are violent. I am not afraid of my son. He has never been violent. Actually, people with serious mental illness are eleven times more likely to be victimized by a violent crime than the general population.*

4. Isn’t mental illness just an excuse for bad behavior?

Response: Sometimes mental illness looks like ‘bad behavior’ to others. For instance, when police try to reason with a psychotic person who is hearing voices or experiencing delusions, the person’s behavior may seem odd or defiant. A person experiencing an altered reality may also be very frightened. The person cannot understand or respond to what is said because his inner process is altered, which makes him unable to hear the real world around him or process what is happening. Often, his response times become delayed also. He does not choose to have these experiences.

5. She’s really out of it.

Response:  Yes, she has psychosis. Because of her brain disorder she sometimes hears voices, and her reality is different from ours at this time. She does not choose to have these experiences. What is most helpful to her is kindness and understanding.

6. You poor thing, having a child like that. How do you do it?

Response:  It is challenging to advocate for an adult child with mental illness. There are no outward signs to indicate she needs to be treated with kindness. But there are stigma and myths that perpetuate misunderstanding about mental illness. The person who suffers most is the person with the brain disorder because she remembers herself as she was, and knows what she has lost. What’s painful for parents is that we cannot always help our child and sometimes others falsely judge us for our child’s illness.

7. How did this happen?

Response:  Mental illness is a confluence of genetics, environment, and possibly drug use. It is a brain disorder that we parents didn’t cause.

8. Why won’t he just take his meds and stay in school?

Response: Some people who live with mental illness also have anosognosia, a common feature of brain disorders that affects the self-awareness of one’s own illness. This is the reason many who live with mental illness don’t believe they are ill and therefore, don’t think they need medications. Some professionals and advocates believe that if mental illness was not stigmatized, those who need treatment would be more likely to embrace it.

Here are ways to communicate your support for a parent who cares for a child with a brain disorder:

If you want to learn more

You can say:

  • I don’t know much about brain disorders but explain her illness to me and tell me what I can say to her or how to act toward your daughter.

 After learning about their child’s hospitalization

You can say:

  • I’m sorry. Can I help your family while he is in the hospital? Can I walk your dog, or pick up food for you?
  • Would it be ok to send your child a card in the hospital?

Show general concern

You can say:

  • I’ve heard that it sometimes feels as though you have lost the child you once knew.
  • What would be helpful to you at this time?

You can and want to offer your time or perform a helpful task

You can say:

  • Any time you need to talk, I can listen.
  • Any time you need a distraction, call me and we’ll go to a movie, for a walk, out for coffee…
  • I am happy to offer my _______expertise.

Examples: cook meal, help navigate insurance, find a psychiatrist, research medications, walk the family dog, drive other children to school/ sports/ activities, help the family locate a Family- to -Family NAMI class or find other support.

And one more thought:  If you’re a parent who’d like others— friends or other family members— to understand your difficult parenting journey, or you have a family member whose child lives with SMI, we recommend this blog. Yes, a shameless plug. But we don’t sugar coat anything here and it has helped our own family. Maybe we can help yours.

* Mr. Insel’s blog entry that we have cited can be found at: http://www.nimh.nih.gov/about/director/2011/understanding-severe-mental-illness.shtml) Thomas Insel, NIMH Director, January 11, 2011.

We welcome your thoughts:

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4 Comments on “Eight things NOT to say to a parent whose child lives with serious mental illness and how to respond if you’re THAT parent.”

  1. judyabl says:

    Many thanks for a practical and insightful guide!

    Like


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