Solid Stigma

We have shared thoughts and compared experiences about how the chronically healthy view those of us with obvious disability. This is about discomfort, the silent stares or averted eyes as a wheelchair or even a walker come around the corner and into view. But then there are our brothers and sisters, friends with a different disease, those who face pure discrimination each day.
Mental illness is just another chronic condition, plain and simple. It is no different from MS, lupus or Crohn’s Disease. Except diseases of the mind are dramatically different and have been demonized in books and films, even from the pulpit throughout our history. How the mentally ill are treated provides a useful frame of reference for dealing with the world around us and coping with our own conditions.
I wrote about Larry Fricks in Strong at the Broken Places. His adult life could have become a movie. Larry traveled in and out of psychiatric lockups and jails. He communicated directly with God, driving his car into his house to kill Satan. He swam across a lake to rescue children he believed were buried in a landfill and attempted to fly to South America to confront the major drug cartels.
And on and on. Larry lost a marriage and all his financial resources and descended to the depths of depression. He not only survived but found help and with extraordinary strength of will, pulled himself up and out of a deeper hole than I, for one, expect to ever know. Today, Larry is a rock of stability and leader in the mental health movement. But along the way, he has paid a price, both before and after recovery.
As with all of us, Larry has had to deal with the world around him. “How people view those of us with a mental illness may be worse than than the disease itself,” he told Today a few years ago. He called the common attitude, “the soft discrimination of low expectations.” Larry went on to say that people have assumed his brain is broken and he cannot be trusted again. “Look,” he told me, “the stigma is unbelievable,” adding, “people fight a psychiatric diagnosis because of what comes with it.”
So, I say to say to fellow soldiers fighting any neurodegenerative disease, think twice before feeling put upon or judged harshly by the world. I have to frequently say that to the guy in the mirror. We are but a piece of an extraordinary tapestry, not the center of the universe. We should look up and see all the stars in the sky.

31 Responses to Solid Stigma

  1. Grandma September 21, 2014 at 10:24 am #

    That was beautiful! I think I’m going to have a good cry now. Thank you for your very unselfish thoughts

    • Richard M. Cohen September 21, 2014 at 9:42 pm #

      A privilege.

      R.

  2. Louise September 21, 2014 at 1:06 pm #

    Yes, the stigma is as bad as the disease. Contagious diseases that are incurable or just dangerous bring even worse stigma. I think contagious disease and mental illness both inspire fear. People are often afraid that they will be hurt by a mentally ill person.

    • Laurie September 21, 2014 at 2:11 pm #

      Larry’s story is inspiring. Take advantage of the upcoming elections (we are bombarded with ads), Everyone wants to fix schools and other safe subjects. Let’s ask about physical and mental illness-start the discussion and hope it continues.

    • Richard M. Cohen September 21, 2014 at 9:43 pm #

      Perhaps. Statistically unjustified.

      R.

  3. Yvonne September 21, 2014 at 4:16 pm #

    I also empathize with those who have loved ones suffering from mental illness. We know them as loving caring people when they have their moments outside of their darkness but most of the world only see the darkness when their off their meds or not coping with our reality,which may nit be theirs. My cousin has a beautiful spirit that is trapped within a dark world that at times causes him to talk incoherently or see everyday situations as threatening and so he reacts. But whenever the light peeks through, we have him back if only for a little while. At least with MS the looks aren’t of disdain or fright. So although neither he nor I have control of the path of our illnesses, I guess I got the better deal on the illness spectrum. My disease is more socially acceptable but truth be told, my cousin is more loving and accepting of his circumstances than me.

    • Richard M. Cohen September 21, 2014 at 9:46 pm #

      Interesting. Revealing.

      R.

    • MB September 22, 2014 at 11:53 pm #

      Yvonne, you described my cousin’s illness perfectly. He died two years ago at the age of fifty. We mourned the passing of the man we loved, but mixed in with the grief was a sense of relief that his inner torment had ended. (I miss him terribly.)

  4. Amy Corcoran-Hunt September 21, 2014 at 8:41 pm #

    Hey, somebody I know was just told she’s got cancer all over her liver and pancreas and should get her affairs in order. So there’s that. It’s good to get to be here, even in this sorry condition.

  5. Linda Lazarus September 22, 2014 at 7:38 am #

    For a large chunk of my adult life I was a very large woman. I was also very physically active so my appearance was strong. But, even so, talk about averted eyes! Talk about being invisible, stigmatized, ignored by society and being almost forced to shout my existence to be seen. Ironic. The bigger I was the more invisible I became.

    Really, we are as challenged as almost everyone in molding our lives. I often describe the solution metaphorically as turning a key in my mind to release the lock that keeps me focused on how others view me. Click. The door opens and I see all the people who really just feel awkward and do approach when they find a welcoming smile.
    Linda

  6. Bill Garcia September 22, 2014 at 10:28 am #

    Excellent piece Richard. Too many times we get wrapped up in our world we forget there are those that are far worse off the we are. Ply sister and her husband are both battling cancer. His is inoperable and she has breast cancer. Talk about a chronic disease. In my case I also suffer from. Bipolar. I know what depression can to a person. My hat is off to Larry for fighting back.

    Again, wonderful piece and it should be available to everyone, everywhere. Keep up the good work!!

    • Richard September 25, 2014 at 7:17 am #

      You know.

      Best,
      R.

  7. Dave Boden September 22, 2014 at 4:49 pm #

    Well done Richard.

    Quick comment – MS has given me a serious limp on my left leg. I would say that when I am out in public, the stares are at my leg about 60% of the time. I used to say something to the people, but now I just stare back and laugh.

    • Joan September 24, 2014 at 2:10 pm #

      Dave, this made me giggle. People will just ask or boldly stare at ANYTHING won’t they? I use my husband’s stock response when they are just cluelessly nosy (I strap in the Bioness device everyday). To “what happened to you”, I reply “shark bite”. Their reaction usually says it all.

      • Richard September 25, 2014 at 7:20 am #

        Good answer. I say my wife beat me.

        R.

  8. Colleen September 23, 2014 at 7:47 pm #

    That was said from the heart and was received into mine. What a wonderful way to sum up this il placed stigma. Bravo!

    Colleen

    • Richard September 25, 2014 at 7:21 am #

      Thank.
      R.

  9. MB September 25, 2014 at 9:15 pm #

    Read your last tweet. Yay!!

    I saw my neurologist yesterday (a brilliant MD @Rush in Chicago) and we talked about Northwestern’s research direction compared to the Tisch Center in NY. Hands down his money was on Tisch. He even mentioned you, Richard. I told him I was aware of your involvement because you and I are “friends.” Haha! Love the blog. 🙂

    • Richard September 29, 2014 at 6:34 am #

      Thanks.

      Best,
      R.

  10. Geof September 26, 2014 at 8:09 am #

    A doctor on MSresearch blog proposed putting MS under the umbrella of “dementia,” and his medical reasoning seemed sound. However, there was a huge outcry from MS patients because they did not want “their condition” to be seen as a mental problem. The stigma of dementia is stronger than the stigma which goes along with all the ailments of MS.

    Truth told, even I would rather wear a diaper than be thought mentally unfit, even if it is only the uneducated with any opinion on either circumstance.

    • Richard September 29, 2014 at 6:39 am #

      Dimentia? I do not get it. The power of that word is pretty scary. All of us understand the possible cognitive problems that go with MS. Dimentia? Reasoning, please.

      Is there a name that goes with this?

      • Geof September 29, 2014 at 8:09 am #

        I first started reading about MS as dementia when one of the researchers from the MS research blog I follow wrote about it last year (he has been pushing this approach since): http://multiple-sclerosis-research.blogspot.com/2013/06/rebranding-ms-as-dementia.html

        He points to the definition of dementia as:
        Definition of dementia: Dementia is a loss of mental ability severe enough to interfere with normal activities of daily living, lasting more than six months, not present since birth, and not associated with a loss or alteration of consciousness.

        He believes MS would be treated more aggressively if branded as a “progressive dementia.” Still, who wants the stigma? It turns out most of us are unsupportive of the branding change because it is not how we want to view our situation, even if it calling the stinking rose of MS by another name might lead to actual differences in available treatments.

  11. Sandy September 26, 2014 at 11:50 am #

    From my perspective I am comfortable with being just another thread in your “extraordinary tapestry” . We tend to see ourselves as different even before others do. I mean who didn’t get the old “you dont look sick” or “you look like you are over whatever you had”. So we know we are “not normal” long before its visible to others.

    It has occurred to me that there are two kinds of disease. Those that affect quality and those that aim at quantity. We have what I consider to be a quality of life disease. And I guess if I was given a choice between the two I would pick this kind.

    As I watch my mental quickness and memory fade I know it wont be long until I am going to be lost in conversations. I used to be one of those people that was considered smart when really I was just a quick processor. First to know the answer in class-then amazing at Jeopardy. Really it was an answer anyone could get I just got it sooner. In the past few years I am now about even with the world but when my MS is active I slow way down. I can actually tell when an attack is coming on based on how I do on Jeopardy! Seriously…saves $$ on the MRI!!

    Its a beautiful fall day with glowing maple trees here in Wisconsin,
    Sandy
    (who is just so pleased to be part of the extraordinary tapestry)

    • Yvonne September 26, 2014 at 12:47 pm #

      Sandy- I am right with you sister. my mental agility was what I have been most proud of all my life. I may not have been the prettiest but I was always the smartest. SPMS has robbed me of that ability. I struggle to find words that use to fly out with no problem. It bums me out but at least they come to me eventually maybe an hour or a day. For some they never come back and they are tortured by the loss of the ability to communicate effectively. You truly don’t appreciate what mental illness takes from people until you reach the stage of MS that partially robs you of some of your mental abilities. After 30 years, this is my new sucky reality but I’ll still take it over theirs on the illness wheel.

    • Richard September 29, 2014 at 6:45 am #

      Carol King not withstanding, a tapestry is not necessarily a good thing. It just means we are a disparate and different collection of souls with a common enemy.

      R.

      • Sandy September 29, 2014 at 11:15 am #

        Oh I getcha. But still we are connected to the rest of humanity whether we (or they) like it or not. Most everyone has some sort of tragedy/challenge in their lives. Those that dont are just (unknowingly) waiting in line for one.

        I am not as pollyana as I some times seem….then again…
        Sandy

  12. Sandra Schneider September 27, 2014 at 8:09 am #

    Read your tweet. So glad to hear you feel better, What a miracle!!

    • Richard September 29, 2014 at 6:46 am #

      Thanks b ut tentative.

      R.

  13. dale September 29, 2014 at 11:44 am #

    I almost threw in the towel this morning. Thanks for some perspective. This blog is so helpful especially when I’m trying to deal with people that just don’t get it.

    Not dead yet.

    Thanks,
    Dale

  14. Meg Frischholz October 18, 2014 at 6:37 pm #

    I found this blog searching for some info on Terri garr, as I had just watched her in THe Black Stallion. She is one of my favorite actresses.

    As I read several entries and on this one i felt compelled to comment. I have an adult son with the diagnosis of schizophrenia, so even after dealing with the onset and subsequent years of trying to help him, on and off meds, the heartbreak of seeing him decline to a point where we are just happy he lives in a decent place, the financial and mental strain associated with loving a child who has these horrible issues is such a daily struggle. So I thank you for writing something that had meaning for me. I wasn’t “looking” for it today, but have found that inspiration often happens that way.

    Your work here is very beneficial, i feel it is important to cross post on other kinds of disabilities from time to time if only to illustrate the very real struggles we all face. part of the tapestry now.

  15. Meg Frischholz October 18, 2014 at 6:40 pm #

    Oops hit the submit comment before I had the chance to edit my grammar and punctuation… Haha. My old iPad is a pain to type on…