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Families and Mental Illness: Education Empowers

June 21, 2012 Randye Kaye

We still hear it sometimes: it's the family's fault.

  • "They were too demanding during childhood."
  • "That mother is so overprotective."
  • "No wonder you have issues; your parents are cold and withdrawn"
  • "If we can just get you away from your family dynamic, you will recover so much more quickly."

You know, maybe sometimes that is true. I certainly grew up in the baby-boomer time when all we thought we wanted was to get away from our families and have our "independence." I myself moved across the country to another coast for four years, in order to escape the "scrutiny and judgment"of my family - only to realize, eventually that most of that judgment, and the ability to put it into perspective, came from inside of me.

Like many of my generation, once I regained my self-esteem and grew myself up, I moved back home. I wanted my history back, and wanted my children to know their grandparents, aunts, uncles, and cousins.

Sure, this is not true for everyone. Certainly there are those who rightly choose to stay far away from their families and childhood memories. But in the world of mental illness, this decision - and the professional support of the idea that everything is your family's fault - gets knocked out of whack.

Early Detection Matters

When my son Ben (diagnosed with schizophrenia at age 20 after five years of guesswork, chaos and confusion) was a teenager, many providers looked for the family dynamic as a key to his "misbehavior" and "issues" - and we tried everything we could to be better, follow advice, fix the problems with greater discipline and talking things through.

I talked things through until my throat was sore. And whatever progress seemed to be made was gone the next day - or an hour later.

It wasn't until the diagnosis - and the revelation that Ben's "problems" were a result of a chemical imbalance in his brain - that we stopped blaming ourselves. All our "mistakes" were due to the fact that we simply had not understood what was happening.

It was education that empowered us to me better partners in Ben's recovery - and our own. Without it, we could have continued to be "part of the problem" - trying desperately to "fix" what was unfixable by talk therapy alone. By learning about Ben's illness through books, websites, and NAMI's Family-to-Family program, we could finally step in and be effective partners to Ben's doctors, nurses, social workers, housing staff - and, of course, to Ben himself.

[caption id="attachment_951" align="alignleft" width="119" caption="Family Dealing with Mental Illness"]end of rope[/caption]

By the time well-meaning therapists, counselors and psychiatrists meet families of those with mental illness (even before the diagnosis) , it can certainly be tempting to point the finger. They are meet families who are at the end of their rope - and hanging by a thread.

  • They see families shut-down by trauma - and may think them cold.
  • Mothers who are frustrated and confused because for months or years nothing seems to work - and see them as demanding.
  • Fathers who are simply dazed by changes that are traumatic - and stamp them as aloof.
  • Siblings who are simply worried - and decide they are enmeshed.

The family you meet is probably not the same family that existed before the illness began.

Mental Illness Education Empowers Healthy Involvement

Not to say all families are perfect - not at all. We all make mistakes - but where mental illness is concerned it's a lot easier to make those mistakes because we simply don't know what else to do (despite well-meaning advice of others) after we've "tried everything."

Parents are not handed a survival manual "in case of mental illness" when our children arrive. We learn as we go - if we are lucky and someone points us in the right direction.

With education, families can be incredible partners in the recovery process. Not toxic. Don't blame them. Help them. Guide them. Maybe it's not as hopeless as it seems - at least, not all of the time.

In our case - and many like ours - family involvement (carefully balanced with independence) has helped keep Ben on the recovery path. We are lucky - we found the empowerment of education. But it had almost been too late. If we had known sooner, could Ben have avoided his psychotic breaks? I'll never know. But I know I'd have wasted less time arguing with him.

Families deserve the respect and information that education can bring -then see how much less "toxic" they can be.

APA Reference
Kaye, R. (2012, June 21). Families and Mental Illness: Education Empowers, HealthyPlace. Retrieved on 2021, April 23 from https://www.healthyplace.com/blogs/mentalillnessinthefamily/2012/06/families-and-mental-illness-education-empowers



Author: Randye Kaye

Briar
August, 14 2012 at 7:08 am

I live in Wales and I don't think we have NAMI here. There are some very good information sites and all that, but it's all a bit clinical and I think mental illness is very very personal. Yes, there are sets of symptoms, but each person's experience is unique.
I have learned useful things this week. I was thinking of starting a blog so that I could share the useful things. I know that coming across you has helped, I feel less alone. I didn't think would be that way, I've always been pretty independent. Anyway, I will start a new blog on Blogger, will call it My daughter, schizophrenia and me, if you'd like to read it and keep in touch, that would be lovely.

Briar
August, 4 2012 at 7:42 am

My daughter is 20 now. She was hospitalised 14 months ago when she was still 19. She has been diagnosed with schizophrenia. Some of the things you have said about you and Ben really resonate. I've not found anyone to talk to. I really believe that most of the staff consider me to be the problem, not because they have gotten to know me, they pretty much avoid interaction as far as possible, and not because I've been a pain, I've been calm and co operative, apart from insisting on spending as much time with my daugher as I am able, and she wants, rather than just leaving her to rot in the hospital. As you know, I could write forever trying to describe what has happened but what I really wanted to say is this: It is not fashionable to blame ourselves for things, there are always excuses. But looking back, I can see the things I did wrong, how selfish and blind I was, and I KNOW that this is my fault. I can't turn the clock back and do things differently. What I need is help to know how to do better now. It is not fair that my daughter should have to suffer like this because I was a mess when she was growing up. I need to find a way to help her be well enough to get out of the f..ing hospital and on to some kind of satisfying life. But I get nothing. When I ask questions, I'm avoided, or told to look on the internet for information.

In reply to by Anonymous (not verified)

Randye Kaye
August, 4 2012 at 10:24 am

oh Briar, i feel your heartbreak. one of the most powerful things i learned in nami is that mental illness is no one's fault. stress does not help, of course - but it is not the cause.
i strogly urge you to reach out for support. have you called your local nami chapter? healthy place as a lot of great info too, and in my book i point to resources in every chapter. i could not have survived without help. i hope you can find some too. this is a start!
hang in and know you are not alone.
randye

Dr Musli Ferati
July, 4 2012 at 10:10 am

Indeed the place and the role of family on the appearance and the course of mental illness to any its member is of crucial importance. Therefore the process of education of family on the real nature to mental disorder takes a principal significance on the successful treatment and the satisfying management of the mental disorder to any its member. As You mention in in your paper, there are many misunderstandings and misconceptions as well that overloaded the responsibility of members to family on the development of mental illness and its outcome, of course. In order to decrease these misinterpretations, it should to know that the material basis of any mental illness is the brain, as most secret and unrecognizable organ of our body.Other psycho-social factors, such is family network system have got secondary role, that are of great importance as supportive element on the process of recovering, above all.By me as expert of mental disorders, the best way to help the mentally ill member is to deal with it like mentally heath one. Any hyperprotective or negligence toward mentally ill member would worsen the definitive prognosis of respective disease.

Mary
June, 21 2012 at 4:12 am

Ben is so lucky to have you. I wish people in my family had taken the time to get educated and informed about my illnesses (Bipolar I and PTSD). They never did and never will. It saddens me but I've been reaching out to people who aren't related to me and they seem to be more accepting of me and my illnesses. I was diagnosed thirteen years ago and have given up hope that my family will ever be truly supportive. I've been inpatient on numerous occasions with no visitors or maybe one within a two week time period. I tried to explain how much it meant and helped to be visited but all I got back was a complaint about the 45 minute drive to see me. They'll do the minimum like pick me up at d/c but thats about it. My case manager tried to get my mother to do Family-to-Family but it didn't happen. Even now, thirteen years in, I think it would be beneficial if she would do it. I'm like the family secret. No one in my extended family has ever called or visited me in the hospital which also hurts. I'm rambling, just really wanted to say how lucky Ben is.

In reply to by Anonymous (not verified)

Randye Kaye
June, 21 2012 at 4:34 am

Mary, thank you so much for this comment! It means a great deal to hear your perspective...and I hope that someday your family will get the info they need to be more supportive. Thanks for your kind words, and I hope you find support in other places for now.
Randye

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