Guilt and it's not anyone's fault

I teach a NAMI Family to Family education course every fall. The course meets for 12 weekly 2 1/2 hr classes and the course is always full (20 participants). One of the goals of the course is to let family members know that mental illness is not their fault, that they need not have any guilt. To let go of that guilt they feel.

Try telling that to any mother from any culture and you' might be blue in the face before they let go of that guilt. Even though they come to understand that mental illness is partly genetic predisposition in nature, a biological process, they still view it as they gave their child those genes that are part of the cause, as if that it's their fault. No one has a choice in which genes they pass on to future generations. (At least not yet.) IT IS NOT ANYONE'S FAULT!

If only mothers (and fathers and siblings) could realize that it's more important to deal with the reality that their loved one has a treatable illness that is the fault of no one. People are born with all kinds of predispositions to illnesses such type 1 diabetes or muscular dystrophy and we don't blame them for this. It's the unfortunate luck of different combinations of different genes that are either on or off. We are just beginning to understand how this happens.

The important message I'm trying to get across to mothers (and all other caregivers) is to focus on the present and future and assist their loved one in how to effectively manage their mental illness so they can live a productive and happy life just as anyone else would. Don't dwell on the past that can't be changed; just accept it and move on. The sooner you do this, the sooner you learn everything you can about the illness and treatments and services available so your loved one can too and be on the road of recovery, a lifelong journey for many.

If you get stuck in the past your loved one is likely to also. What's the expression, "like mother like...."

This is all meant in the most loving and understanding way from a sibling who became the caregiver in her family. Happy Mother's Day.

May is Mental Health Month

I co-hosted a WeGo Health Webinar on Wednesday April 28th with Amy Kiel and the focus was May is Mental Health Month. Here is the link to some tips, tools and suggestions on how you can get involved http://bit.ly/bSddS6 . So how will I be getting involved?

I'll be exhibiting at a corporate health fair and displaying lots of helpful information on mental health and recovery and the support and education programs of NAMI Massachusetts. I always try to interact with people who come by and I'm often successful in finding out why they are getting literature and if they have any questions I can answer in person.

I'll be participating in the weekly Tuesday Mental Health and Social Media Twitter chats which I really enjoy. I'm always so invigorated after the chat, having discussed and shared thoughts about mental health topics with like minded people from Canada, England and Australia as well as across the U.S. Join the conversation on Tuesdays at 10pm EDT http://www.twitterchat.com/room/mhsm For other time zones use this http://bit.ly/aYgGdo to convert to your time zone.

I'll be tweeting and posting daily Facebook status updates about mental health facts, dispelling myths and telling how mental illness affects the entire family. I'm hoping that the followers and friends of NAMI Massachusetts and my personal Facebook friends will retweet/copy them into their status so we can raise awareness and reduce stigma. As a unified voice I hope we'll make a significant impact.

As Volunteer Coordinator for NAMI Massachusetts I'll be participating in the NAMIWalks Massachusetts: Changing Minds One Step at a Time on May 15th at Artesani Park, along the Charles River http://bit.ly/cCoefb. This Walk is such a fun experience, and yes a lot of work, but still lots of fun. It's wonderful to be around thousands of families, friends and so on, celebrating that mental illness is just like any other illness and that there's no shame or guilt associated with it - at least for those precious few hours. It's very empowering for most walkers and volunteers to participate.

I've pulled together as many Mental Health events in the state of Massachusetts as I could find and put them together in a calendar on our website http://bit.ly/cCnIS4 I'll keep adding to the calendar as I find more events and programs. If you know of one please email me the info at cindynelson@namimass.org. There's a lot of good stuff going on around Children's (May 2nd-8th) and Older American's (May 23rd-29th) mental health so I hope people will take the time to check them out.

I'll be moderating a workshop at the Suicide Prevention Conference in Marlboro, MA and also helping out at the NAMI Massachusetts Exhibit table.

I'm sure there'll be more I'll add to my list and I'll keep you posted.

So please use me as your inspiration to get involved. I hope to see in your comments what you did to honor or celebrate May is Mental Health Month.

What do the words mental illness mean?

I've been thinking about this question lately because I saw someone say on twitter that there isn't much stigma now. There are many others, including myself, who disagree with that tweet. So I started to think about what the words "mental illness" meant to people.

My first thought was to try to explain what mental illness is and this is difficult, because although recently there have been some advances in research, there is still no one gene or causal factor that medical science can point to and say this is what causes mental illness. Current thinking is that it's a three pronged chain reaction; a genetic predisposition; a stressful trigger or traumatic event; and lack of early identification/intervention with effective treatment. There is usually a delay of approximately ten years between onset of symptoms and illness identification followed by effective treatment.

The last prong of the chain reaction could be and possibly even the illness itself be prevented if there was early identification of symptoms followed by effective treatment.

What's the reason for the delay? One reason for it is due to the lack of knowledge about what the warning signs are on the part of parents, medical professionals, education professionals and religious personnel, anyone who has personal contact with a child or adult, but especially a child or adolescent. Another reason for it is outdated ideas about mental illness; thinking it's a weakness of personal character, thinking it's a result of poor parenting, even thinking that it's the person fault for not following their god or is being punished for some alleged sin. Yet another reason is cultural; there is shame in most cultures associated with having mental illness. The person who has the illness is kept away from others out of sight and isn't allowed to participate in life the same as others.

Does that last one sound familiar? It should, even here in the U.S., because we're a melting pot of cultures, this has effected how mental illness has been treated. Those with mental illness were kept at home (inside) until their illness was so severe that they were placed in an asylum or some people call them mental institutions for the rest of their life. Some institutions were nice if your family could afford it but almost all were absolutely awful beyond belief because they focused on containment and restraint. I don't want to get into any more details you can investigate that on your own. You should know that there are people with mental illness who are kept at home away from everyone even today in 2010, here in Massachusetts. That's such a sad statement.

Regardless of what the reasons are, education is something we can all participate in, something we can start doing today to solve the third prong of the chain reaction. We don't have to be scientists or mental health professionals. They should be doing their jobs in research and treatment. So my recommendations are as follows and these are not new or original ideas.

Ask that all public and private educational personnel (yes including staff) be required to receive some basic education about mental illness and what the procedures should be when someone either displays symptoms or talks about symptoms of mental illness. Any health class would include a discussion about mental health since they are connected.

Ask that all medical professionals be required to receive more mental health education in medical school and stay up-to-date for licensure. Since more and more primary care physicians are prescribing medications for mental illness they should also have up-to-date knowledge on the subject.

All mental health professionals should be required to maintain up-to-date mental health knowledge as part of their licensure. There are professionals with outdated knowledge who should not be treating people with mental illness.

Ask that all police, armed services, justice system and correction system personnel be required to receive in depth education and training about mental illness. (Ideally people with mental illness should be diverted to treatment at the earliest point of contact.) We don't want the jails and prisons to become the next mental institutions for our future children. What does that say about our commitment as a nation, to the most vulnerable in our care.

The Federal and State governments can and should, in conjunction with nonprofit organizations (and there are many), launch an in depth and long-term mental health education campaign about what mental illness is and what it isn’t and that there’s no shame in seeking treatment. This campaign would have to use a multi-media approach to reach all audiences, young and old, and all cultures. Early identification and treatment is most effective just as in any other illness. Education and early identification and treatment would cut long-term health care costs tremendously. This should be a no-brainer.

The following is for use as an informational guide not a tool for diagnosis which needs to be performed by a licensed and trained mental health professional. First seek out the expertise of your primary care physician and then he/she can refer you or your loved one to a mental health professional if required.

Warning Signs of Possible Mental Illness:
Sitting and doing nothing; rocking or pacing
Friendlessness; abnormal self-centeredness
Dropping out of activities; decline in academic/athletic performance
Inappropriate hiding
Loss of interest in once pleasurable activities
Frequent or sustained crying for no apparent reason
Expressions of hopelessness; extreme pessimism about everything
Excessive fatigue or sleepiness, or persistent insomnia
Inability to concentrate or cope with minor problems
Irrational statements and/or peculiar use of words
Excessive fears or suspicions
Bursts of emotion unrelated or out of proportion to the situation
Hostility from a person formerly passive and compliant
Indifference in important situations
Apparent inability to cry or express joy
Inappropriate laughter
Unexplained severe anxiety or fearfulness
Changes in eating habits; gorging, purging, starving
Hyperactivity or inactivity or both
Deterioration in personal hygiene or grooming
Extreme washing, checking, or counting
Noticeable or rapid weight gain or loss
Hair pulling or other forms of self-mutilation
Unusual involvement in automobile accidents
Drug or alcohol abuse
Forgetfulness or loss of valuable possessions
Frequent moves or hitchhiking trips; running away
Bizarre behavior; skipping, staring, or strange posturing
Extensive, sustained hoarding
Excessive sensitivity to noises, light, clothing, or smells
Obsession with and collection of guns, knives, explosives, etc.
Violence directed towards objects, animals, others, or self
Reports of hearing voices or seeing sights unknown to others
Beliefs that are obviously contrary to fact
Delusions of grandeur or persecution (paranoia)
Suicide ideation

I didn't think of myself as a joiner until recently...

I'm a babyboomer in my mid 50's and in the last decade I've noticed that alot of my peers don't really belong to anything. I'm not sure if it's just that I'm noticing it more and it had been happening all along or whether it's a more recent phenomenom. Or maybe nobody talks about belonging to organizations anymore like they used to.

When I was growing up, my family attended church every Sunday. My mother belonged to several community organizations like a garden club, a hospital auxillary and even a woman's group at the church. She was always going to meetings and participating in fundraising events. She even instilled it in me. I sang in the church choir, the school chorus, played in the school band and orchestra. I volunteered at the local hospital after school a couple afternoons a week and several days a week during the summer. I don't recall my father doing as much as my mother but he was working two or three jobs when I was growing up so I didn't see him as much.

But after my dad retired, he founded along with some other like minded county residents, a non-profit organization, called Hands Across Middlesex, that helps the needy in their county in Virginia. It's now in it's 18th year and I'm very proud of him and his organization. Many families have new homes, new wells, or new septic systems. Many individuals and families have had all manor of home repairs everything from a handicap ramp to a new roof. Most of the labor is volunteer and most of the supplies are donated. It's really, in my opinion, the perfect example of community teamwork, and helping out your fellow man.

I'm sure there are examples of it today but I don't see or hear of it like I used to when I was young. Oh yeah, you see it on TV with the Extreme Makeover Home Edition. I have heard of some schools requiring it for high school graduation and that is good. Perhaps all schools should require it at each level - elementary, intermediate and high school so it becomes more ingrained. What concerns me is that parents (my age and younger of course) aren't requiring more of it from themselves or their children.

I started writing this blog entry about volunteering but it's also about being a member of an organization and lending a hand when it's needed, about belonging. Any number of non-profits like musuems, symphonies and even food banks and homeless shelters count on members/donors/volunteers to help them stretch their budgets, raise needed funds for community programs, and provide the services that they were founded to meet.

Since I belong to alot of these organizations, such as the National Alliance on Mental Illness, WUMB Folk Radio and the Greater Boston Food Bank, I donate as much of my time and my money as I am able. What I've noticed is there are mostly people older than I am that are the members or volunteers. Where is everyone else?

My generation, the Babyboomers, are allegedly the largest blip in population growth and yet I haven't noticed the same blip in volunteerism, donorship or membership in the organizations that I belong to. Non-profit organiztions will probably agree that the supposed windfall has not materialized as has been forecasted by many experts.

So how do we make this enormous volunteer/membership movement materialize? Do we use guilt which usually works when our parents apply it. Do we use shame which usually works when our respected political or religious leaders apply it. How do we inspire the Babyboomers to become joiners? Why aren't they following in the footsteps of their parents? What is missing from this picture?

In future blog posts I'm going to explore this and see if I can't shed some light based upon my observations and conversations with some babyboomers and perhaps even their parents. Stay tuned...