Is sharing a diagnosis of dementia brave?

The many words used when a person first makes it public knowledge

They have been diagnosed with dementia are words like

#brave

#courageous

#inspiring

Then, if we dare to live too positively with it

We are told we don’t look like we have dementia.

The only thing really needing true grit, bravery and courage

Is putting up with the ignorance, stigma and discrimination

Or the sheer brutal unkindness towards us, from people without dementia.

The latter is often in the form of bullying or public defamation

Living life, with or without a critical illness or condition

Is one hell of a roller coaster ride of ups and downs.

Life with dementia is little different

Except for the attitudes of or treatment by others…

Footnote: in the last few years, there are now many people without dementia who are helping to positively change our experiences of stigma and discrimination. Thank you one and all. You know who you are xxx

25 thoughts on “Is sharing a diagnosis of dementia brave?

  1. I think it’s considered brave to admit to having dementia because once it’s “out there” people tend to hold it against you. Maybe “see you through that lens” is a better way of wording it. Even when they don’t deliberately set out to do so, your you-ness is from that point forward tinted with a new lens. I suppose that is true of many chronic illness/conditions too, but I think it’s more heavily applied to anything involving the mind.

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  2. Pingback: Blogs and Other – August 2018 – When The Fog Lifts

  3. I often wonder why people react the way they do when they write people off who have any form of neurological complaint Is it fear or is it just a series of culturally entrenched attitudes that say people who are in any way mentally compromised are “useless?” For most of my adult life I have struggled with this because I have been mentally ill the phenomenon of, openly hostile people who want to slot you in a place that is predetermined and prejudiced by our culture. How many times when I have been depressed have i been told that I need to snap out of it? Or on the very few occasions when I have been manic have I been told or yelled at to “go away!”

    The reality is that most of the time my condition is manageable and very well controlled and that I have many highly researched insights to offer people, yet all they see is my illness and not whether I am actually capable of anything. This is bullying and it can happen both subtly and antagonistically from people who are inwardly cowardly or who are scared. I don’t know why they cannot catch my illness. It is not contagious and when they engage in that form of ostracism not only do they lose out but everybody else loses out too

    So here you are Kate I have bipolar disorder and I am brave enough to admit it mostly because I am sick of hiding it . I call it “the curse” not because it can be overwhelmingly painful and at many times it has been but mostly because of the attitudes of others in dealing with me and their untrustworthy and unworthy belligerence, Their bullying I guess is aimed putting me in my place and has often prevented me form realising my full worth. I have an idea what it is like for you Kate because i have had doubters doubt me all my life. That is what doubters do, they love to doubt but we can prove them wrong and we will!

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    • Thanks Colin… your words are wise, and mean a lot to me. I guess one of the other comments on tis blog, “ignore the ignorance” still works here! I might occasionally adjust it to “ignore the ignorant!!!” Take care my friend, together, we are stronger, and can and will change the systemic ignorance, stigma and discrimination most of us face. xx

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      • Thank you Kate . I hope what I have said has been of some help. I had to leave it over night to think of an answer because in commenting on your latest poem I had to describe how it has been from my entire adult life. I was first diagnosed with depression when I was nineteen and despite the inclusive rhetoric that has gone on since, despite all of the good work of mental health advocacy, i would have to say the reality is much the same and today’s post modern culture is perhaps more rancid than it was then. What is worse is the generation in command now are often more bullying than in 1971/1972. The thing that gives me hope however is they no know a lot more about the mechanism of neurological / mental health conditions and the pharmacy is far more suitable. It may soon also be the case for dementia. Yet the old adage still applies: “how people fare with any disability is often made better by the way society treats them.” There is still an enormous amount of work to be done there because no amount of science can cure the black hearts of people who bully others.

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      • Sadly I agree with you.

        Your last lines really resonated dear Colin:

        “Yet the old adage still applies: “how people fare with any disability is often made better by the way society treats them.” There is still an enormous amount of work to be done there because no amount of science can cure the black hearts of people who bully others.”

        Let’s only focus on those who do not have black hearts… x

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  4. Christopher never had any negative attitudes when he was public speaking about his dementia, but as it was ten years ago and he was a novelty , maybe that was the reason. He now has limited speech but I hope feels he did what he could. Keep going Kate and ignor ignorance xx

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    • We need Governments to realize that AD is beyond a cure since these men who legislate have no idea on how incurable diseases should be addressed but only look at politics and budget, the heck with expendable people. In the States I can blame so many fund raising with false hopes with the money not used for it’s intended purposes, research. The WHO with their good intentions have missed the point as to what is needed, sound research and to forget the Nobel prize and profit. We need a humanitarian uproar as too many people are dying from AD hospice and palliative care, thanks to a profit making industry. Postscript- I lost my wife of 72 yrs to AD and at 99 I will still go home angry.

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      • I totally agree we do need a “We need a humanitarian uproar” as you suggest! Not sur ehow, but we will keep speakign up, writing about things, and maybe one day, things will change. Take care xxx

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