Tuesday, January 15, 2013

lose the stigma of mental health care

Stigmas are creepy little things until they bite you in the ass or kill you.

If I believed the National MS Society or Patti’s neuro back in the 90’s that dementia was not a symptom of Multiple Sclerosis, then myself, our daughter and Patti could all be dead from a stove fire while my wife sat enjoying her lunch - dementia doesn't need a gun to kill.

A ‘perfect storm’ of mental health care looms to rival any epic struggle in our nation’s history. Yet we seem to chase consequences rather than look at causes.

1 in 8 Americans over age 60 are diagnosed with dementia. While Alzheimer’s is the most common other chronic diseases with dementia include Multiple Sclerosis and Parkinson’s.

Simultaneously, rising up like a breaching leviathan is the Age and Autism with 1 in 88 children aging out of the special education school system.

What little mental health resources and time is available for the plethora of other childhood and adolescent anxieties and developmental disorders is being swallowed .

from the Boston Globe,  A list far too long
“Just days after a young man massacred a group of first-graders at an elementary school in Connecticut; Dr. Leonard Rappaport (chief of developmental medicine) sat down with a mother who had brought her 7-year-old son in for an appointment at Children’s Hospital in Boston. …… “That’s impressive,” Rappaport told her. “You’ve got all your Christmas shopping done.”     … It wasn’t a gift list, she explained. It was a list of the mental health professionals she had called to no avail: Either they weren’t taking new patients, or they wouldn’t accept her insurance.     The list contained 66 names. …”
Over 15 million Americans currently are caring for a person with dementia. An estimated 17 million Americans are caring for a child with special needs. The American career focused dream, "Keeping up with the Joneses", is a candle burning out on both ends.

People with cognitive challenges diagnosed or undiagnosed, treated or untreated are discriminated against. Families are too often lied to in the name of optimism or simply the appointment time is up.

Mental health care MUST be available on parity with physical health care.

Mental health care MUST be honest. Mental health care MUST be responsible.  

baseball style hat embroidered with "lung cancer survivor"
Most important of all ‘we the people’ need to lose the stigmas. Wearing my “lung cancer survivor” hat I am always pleasantly surprised by the knee jerk support and encouragement from strangers; yet if I was wearing a “depression survivor” hat I’d bet money the reactions would be different.

The stigmas surrounding mental health care in America still shackles careers, haunts families and yes, kills.

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/


  1. "Fighting Cancer"
    "Fighting Dementia"
    Yes, can you IMAGINE the different responses you would get, and when you say, "No, *I* am the one with dementia." I see them slowly walking backwards and away.
    Great post. WAKE UP PEOPLE!

  2. It's sad but true that mental illness, dementia, and other brain illnesses receive such poor recognition. My daughter is a psychologist, treating mostly children. Her patient load increases each month, and she's only one person. I began seeing the increase when I was in education, too, but how far has this country advanced in providing enough proper care?

    1. I know I'm showing my age Muffie but I remember Senator Tom Eagleton, dumped by the Democratic Party after only 18 days as their VP Candidate in 1972 because he had been 'treated for depression' yet good enough for the people of Missouri to re-elect by landslide margins twice more to represent them in the US Senate. That was 40 years ago - the stigma of mental health care remains.

    2. I am conscious that I don't talk about my husband Don's dementia on my blog, but it is a huge component of the illness. Why don't I mention it? Well, because of the stigma that you are talking about. Maybe I feel that it is humiliating for people that we know, to be told that eg yesterday he complained that the staff would not let him get out of bed so that he could walk out to the newsagent to get the paper. I said, Well it was probably about your safety, because you would need help to walk, wouldn't you? (Not that he can walk, but still.) And he said crossly, Of course not, I don't need any help! I'd go there myself but they won't let down the sides of the bed to let me out -- of course I can walk there! ... And forever wanting me to book him on a cruise / overseas trip / I'll come on the beach holiday with you / why don't we buy a block in the country and I'll grow some vegetables - etc etc. All this from someone who needs a full body lifter and two staff, to get him out of bed into the shower. I can't tell him the truth because he thinks there is still a life. And I can't put it on my blog, not sure why. It is such a relief to read your blog and your honesty, and be able to respond honestly to you.

    3. Barb, thank you even if it only one by one that we as MS spouse caregivers step out of the shadows of the stigma, the truth of dementia and Multiple Sclerosis needs to be heard.

  3. I am glad I found your post, it is not easy to write on these subjects, mental health is one of our century illness.

  4. Patrick, this is completely off topic, but you'll soon see why. I don't know whether you ever visited the blog MS Recess at msrecess.com. It is written by a young woman in her 20s. She and her sister are struggling with their Mom's late-onset MS and their father's struggles in dealing with it all. Do you think you could stop by and see if you want to tell her anything? Thanks.

    1. Hi Judy, actually I wrote an entry here in Caregivingly Yours about her blog MS Recess "when a parent has MS" back in June of last year and have visited. Like many trying to cope with onset of MS, frankly Patti's symptoms and our story can scare the sh#t out of the newly diagnosed and their families. I never push, we are here.

    2. I probably found out about her and starting reading her blog after your post. :)

    3. Glad to help, Judy. When I can I try to shine the light on fellow bloggers. Every chronic illness ripples through families. Why is just the person diagnosed or their spouse caregiver who shares? What about the parents of adult children diagnosed where are their voices? What about siblings or aunts and uncles? The blog you reference is a perfect example with MS most often diagnosed in mid life, where are the adult children? Our story on the other hand is so long and old, our daughter has never know her Mom any other way. She has never see her walk except in old videos. Sometimes the silence of caring if deafening?


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