Mental Health Advocacy with Cindy Nelson, NAMIMass

Cindy Nelson, @NAMIMass, was our guest on February 23, 2011.  We had a chat jam-packed with information about mental health.  


First the chat started with a huge number of statistics about mental illness and mental health. Here is a list of important facts about mental health.

•        Suicide has increased (largely due to the prolonged poor economic conditions) http://t.co/17AgiLQr
•          90%+ of those who die by suicide have a diagnosable mental illness. http://t.co/ZauDLpyj
•          Of the 20% living with a mental illness, 67% haven’t received any treatment largely due to the stigma 
•   One out of five people are dealing wth a mental illness in any given year meaning EVERYBODY KNOWS SOMEBODY who is living with a mental illness!
•          4.8% have a serious mental illness that substantially interferes with or limits one or more major life activities in the past year
•          50% of all lifetime cases of mental illness begin by age 14; 75% by age 24
•          In 2009 1% of U.S. adults made suicide plans in the past yr, 0.5% or 1 Million ) attempted suicide according to the latest available data.
•          3.7% of adults had suicidal thoughts in past year. The highest number among age 18-25 yrs 6.0%, then age 26-49 yrs 4.3%
•          37% individuals with an alcohol disorder and 53% of individuals with a drug disorder have also been found to have a mental illness

A participant informed the group that, "Neuropsychiatric Lyme disease causes much suffering because of the stigma attached to both mental illness and Lyme.  [It] can be a cause of suicides."

Mental illness is a worldwide phenomenon.  A participant from Australia provided some important facts as well.

•  Over six million work days are lost in Australia each year due to depression alone.

• Around one in six Australian men suffer from depression at any given time

• Four times more young men than young women commit suicide (Australian Bureau of Statistics, 2000)

Our group was reminded by a chat member, "Stats are good and hard hitting, but a conversation with a mentally ill person speaks volumes and is more personal."

When we talk about mental health literacy are we really talking about coming out of the closet about mental illness?

According to Ms. Nelson, "For some of us at a good place in our recovery we are comfortable disclosing our illness. It’s not a badge of courage or shame.  [But] Disclosing a mental illness is up to the individual. It has to be carefully thought out. You have to have a thick skin.  Disclosing is not a requirement but educating the people around you about mental illness is helpful for everyone in the long run."

"Remaining silent is not an option in the long run if we are to change the minds of how people think about mental illness."


" [It's important to] Get to know us and about mental illness. More of us would feel better about speaking up/out if we knew we wouldn't be ostracized.  That person you know [with mental illness] doesn't feel safe telling you because they fear you will abandon them as a friend, loved one, family member."

"That person you know is feeling partially isolated from you because they feel have to keep this secret from you to protect themselves."

               

How do we get beyond the stigma of mental illness?

One participant pointed out that “mental illness still has shame attached to it, from past eras.”  Many agreed.

"Also people with mental illness have history of being locked away, either at home or an institution...hence [the] stigma."  Cindy Nelson stated, “Acceptance is key-take us as we are we don’t want sympathy we just want acceptance.”

Another participant stated, “It's very hard for most people to accept that any substance addiction or eating disorders are REAL mental illnesses.”

Ms. Nelson countered, “Why is it any harder than to accept cancer? Or diabetes? Or epilepsy?

Don’t lump us all together or by what you see in media. We are each unique, the illness is only one part of us. We have many parts."

Agreeing the participant added, "Most people think those behaviors can just be controlled-[they] don't get that [there is] often an underlying issue i.e.- BPD, bipolar2, depression."

"One of the most important factors in recovery from mental illness is understanding and acceptance by family/friends," Ms. Nelson noted.

Another participant said, "Many times the 'judgmental people' are educated...but they still discriminate… some states will not even cover mental health (individual)...."

"[We should] talk about mental illness like it's a sprained ankle," another participant suggested.

  Yet another participant remarked, "Fear of losing insurance coverage is real! Once it's in your chart, you can be denied.[coverrage]  Another agreed, "  And they fear about Losing jobs/Health insurance/Dignity/Respect.   Still so stigmatized."


Ms. Nelson reminded us, "One out of five people are dealing with mental illness in any given year. [This] means EVERYBODY KNOWS SOMEBODY who is living with a mental illness.Stigma is shame. Shame causes silence. Silence hurts us all. Let's everyone speak up about it!  Remember that at one time no one talked about the C [cancer] word but now ... Let's make it the same for mental illness."  

The discussion turned toward education. 

Another chat member stated that, "Education is the way to get past the stigma! Education about chemical inbalance, about mental health in general, about disease." 

Ms. Nelson agreed, "Educating children about mental health combining it with health [education] would be ideal and continue this education through high school.  Education is an antidote to stigma. Learn and talk about mental illness. Early detection, education and treatment is best."  

She recommends, "Get to know how to help someone with a mental illness who is in crisis. Anyone can learn (just as you would CPR or Heimlich.).   Know the lifeline 1-800-273-8255 or http://t.co/sCfhr8qh 24/7 when you or someone you know needs help http://t.co/Mmoudb11"

How do we educate our legislators?

"Mental health services and suicide prevention education have been proven to save lives. We have to continue to fund these priorities." Ms. Nelson stated.  "Legislators need to hear people’s stories, of how cuts in mental health services are affecting their lives and their loved ones.  Legislator’s need to hear from voters affected by cuts in mental health services/suicide education." Ms. Nelson supports "Email/write/call -tell your story! [There are] Lots of stories of how mental health services have helped you/your loved one recover/return to work/school –saved your life.  Most mental health advocacy organizations sponsor advocacy days at state legislators, get involved, take part.  If you’re really brave, go to hearings on bills that are important to you and testify. You can submit written testimony too."

A participant noted, "Legislative attention seems to occur when mental illness occurs in the family of a legislator  Major problem for all is that mental health services are being shut down, even as insurance parity is implemented. No one's doing anything."

"Look what I found!A chat group member excitedly said, "Tweet your Elected Officials to help support @namimass http://t.co/O7ebCuUY, "

Payment for treatment is mostly out of pocket since health insurance doesn't cover the full cost of medications, psychologists or psychiatrists? What can we do?

Ms. Nelson maintained, "There are several things people can do: talk to your legislators about parity for mental health    Talk to your legislators about access to more than medications for appropriate treatment options. Medications alone is not sufficient treatment.   If you don’t have insurance look for patient assistance programs in your state and from pharmaceutical cos for medications.   Contact your local community health/mental health center to find out about services at a sliding scale fee or free.  Contact your teaching hospitals/medical school programs and see if they have any clinics you can participate in.  Contact your local NAMI http://t.co/h87rfjRq and see what they tell you is available in your area."

What is the relationship between the social service safety net and mental illness?

Ms. Nelson answered, "The safety net is the last resort for individuals with very severe and difficult to treat mental illness. It funds programs.  The safety net helps individuals with severe mental illness with programs that provide crisis help and inpatient/outpatient care. These programs help individuals who require close supervision due to brain damage caused by their illness and/or treatment.  Some programs help individuals move from disability to partial disability to resuming a productive life of their choice.  Some programs help individuals move from disability to partial disability to resuming a productive life of their choice."

What is recovery in mental health?

"There is no one definition of recovery. It’s unique to the individual"  But, Ms. Nelson wrote, "For me personally it’s a journey not a destination.   For some people it’s maintaining treatment and returning to work or school, or to their family, it’s up to them.  Many people recover, you encounter them every day, Doctors, attorneys, accountants, receptionists, teachers, pastor/priest, etc.   For some people recovery can be more of a rollercoaster than for others and need to be closely managed.  For some recovery is only a respite between relapses which are not responding to any treatment.  They need our compassion not disdain."  


"[In my case], I keep an open mind, I hope my journey is towards recovery but I remember that there is always a chance of relapse."  

A chatter asked, "Does that help reduce the fear of the illness?"
  

Ms. Nelson answered, "Yes because I accept that it for what it is, I do my best to prevent relapse but it might happen and that's ok.  because after the relapse, there is always a chance for recovery so I guess you could say I always have hope.  I would say that I don't dwell on chance of a relapse... I just stick to my routine as much as possible."


 "Are you at a place you can enjoy the recovery times without being terrified of the next relapse?" the participant asked.  "I don't know if I'm taking care of myself right."


"When told that sticking to a routine helps," Ms. Nelson advised, "Ask what others around you think, those that you trust and see what they say."

Final Thoughts


When asked for her final thoughts, Ms. Nelson presented more options for involvement in mental health advocacy.  "Join a NAMIWalks http://t.co/oksZgujE or Overnight Walk http://t.co/zhRidG1Q near you– these are fighting stigma and raising money  Contact your local NAMI, AFSP, MHA org and ask for someone to come speak about mental illness, suicide and recovery. We’d all love to!  NAMI has In Our Own Voice (IOOV) where two people in recovery talk about their journey http://t.co/2Di9SbBl . American Foundation for Suicide Prevention (AFSP) has educational resources and activities to share http://t.co/pIFEla1V .  Lots of organizations want to help educate and make talking about mental illness as easy as talking about as cancer – contact one today!"