I was asked yesterday via an email,
to think about writing a blog about the
following," Feeling of being ashamed of having Lewy Body Dementia".
When I read this I was close to
deleting it, because it made me feel very sad.
There may well be some communities
where this illness is classed as something to be ashamed of, but this has no
effect on me personally.
As with everyone else who has this
illness, we simply have no option but to accept it and get on with life.
I lost my job as an University
College, Electrical Engineer, and do not remember much about it, it's all gone.
I no longer remember how to do my
job. My electrical exam papers, which I still have in a folder, mean nothing at
all to me, it's like trying to read in a foreign language
I once rewired the College Chapel,
yet now I struggle to fit a 13 amp plug, but that's life.
I also used to run two budgets, but
ended up counting in my fingers, which was distressing at the time.
I sometimes feel embarrassed when I
need to rely on other people, but never ashamed. I just have to admit it and
move on.
Do people with an illness like
Cancer feel ashamed these days?
I know in the 1950-60s people were sometimes
ashamed of speaking about it, but things have moved on these days.
There has been a lot in the press
about people being ashamed of having dementia, but I do wonder when thinking
about it now, whether the press are using this as head line grabbing, rather
than putting out the true picture, of life with dementia.
I do feel that while the press can
be helpful, some of them just use an illness like dementia to sell papers and
scare us all etc, rather than be helpful to us.
There may be a lot of elderly
people who are ashamed of having dementia, but perhaps these people remember
the old stories, and I feel very sad for them.
Some of these stories make me
cringe with horror, but we are all so very different, with different symptoms
and problems, and no two people go the same way.
I know that I was totally shocked
to get the diagnosis, at the age of 56, simply because I had only ever heard of
Senile Dementia, and confess that Lewy Body Dementia sounded weird to say the
least.
At this time I had never heard of
anyone like myself getting this illness, where these days people are being
diagnosed earlier than I was, some in their thirties and perhaps younger.
Then my consultant explained that
there was various types of the illness, some of which had causes like strokes etc.,
where others were unknown
I was worried at the diagnosis, as
I had no real idea what was going to happen to me, but part of me was
determined to carry on, as if the diagnosis had never happened.
I had a brilliant consultant who
encouraged me to carry on, and enjoy each day as it comes, and never try to do
the things which have become impossible to do anymore, as that would be
stressful.
But she said I should try new
things, if I was up to it.
From this point I never really
looked back, because I went on to give talks about living well with the
illness, and that was something that would have been impossible while I was
working.
The mere thought of standing
up in committees in the University shook me with fear, now I take it in my
stride, perhaps because I am determined to fight this illness and the stigma,
we hear so much of these days.
As I said I am certainly not
ashamed of having the illness, as I have done nothing at all to get it, or as
some people think "catch it", because it's not contagious.
So why should I be ashamed.
Its comments like "shame"
where we lose friends, because they feel ashamed to be around us, and in that
case I feel shocked and ashamed of these people, because they have no idea, of
the stress they have caused.
Many of these were academics of one
sort or another, and that made me very angry, and ashamed to have anything to
do with them, because in my view they should have known better.
But I guess that's how many of the
modern day University Academics think these days, when they work in the large
well know Universities.
However some families have
experienced the same thing, from other family members, and that to me is
disgusting, and proves that they know nothing at all about the illness.
It's not that we have done anything
to catch this illness, but I personally feel that people who use words like
shame, when talking about any form of dementia, are treating it like a dirty
disease picked up on the back streets, something we know is totally wrong.
Other people may feel that, but
this is all part of the stigma we see and hear of every day.
I know that there are some people
who may well be ashamed of the illness, and refuse to talk about it, or admit
that they have it, when it comes to friends and family.
But I have always been quite
open about it, because as my consultant said at the start, it's nothing to be
ashamed of, it's just a disease of the brain
Like it or not many others have
diseases of the brain, which are accepted like Parkinson's etc., so why not any
form of dementia.
Never be ashamed of this illness,
which ever form it may be.
If you are diagnosed early enough,
go out and try to enjoy your life while you can, take each day as it comes, and
never get upset at not being able to do the things you have done for years, as
that will only make things much worse.
I am no angel, because I know when
things go wrong, I sometimes get upset, annoyed and occasionally curse the
illness, but I am certainly not ashamed to say that I have Lewy Body Dementia
Through this illness I have been
able to speak to thousands of people all over the UK, and these days I spend
time talking to graduate nurses in Universities about the illness.
So does that sound like someone who
is ashamed of having dementia, far from it?
No comments:
Post a Comment
I always say that we may have this illness, but we are all so different.
This is my own daily problems, but I would gladly share anyone elses, if they send them in,