I mean, in early January of 1999 I didn’t even really know what diabetes was. I have had diabetes for 24 years and for 23 of those years I’ve been involved …

Sugar Support
A Resource for Partners of People with IDDM Diabetes

3rd Quarter - First Edition
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Inside this issue:

Welcome to Sugar Support - by Jayson Newman
Who needs a blood glucose monitor, Ive got Joy - by Gordon Bunyan
Reality Check, and Resources for Young Diabetics
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Welcome to Sugar Support

Hello welcome to our first newsletter Id be lying if I said I wasnt
nervous about all this This little trial project has come about in such
strange circumstances that its hard to believe Im sitting here typing
this I mean, in early January of 1999 I didnt even really know what
diabetes was And so here I am starting a newsletter based around diabetes,
or at least, the partners of people with diabetes

So what is Sugar Support and how did I get here? Good question Sugar
Support is aimed at 18 to 30 something partners of people with diabetes,
and giving these people a resource, or outlet At present there arent
many, if any, resources that I know of for these people, of which I am a
proud member But, again, how did I get here? Well,
sometimes in your life
you come across one of those rare beautifully genuine people - and I
suppose I was a little surprised to find she had diabetes I literally fell
across the idea, or at least her needles, while on a yachting trip where we
first met I watched almost fascinated as she drew back the insulin and
injected it into her upper arm My fear of needles made me instinctively
flinch As our relationship grew I decided to educate myself into exactly
what she was going through I started off on the right foot with a
childrens picture book on diabetes from my local library This was the
basic beginnings of my crusade

But as they say: A little bit of knowledge can be a dangerous thing Then
I came across Kate Little from Reality Check Thats when things started to
snowball, and from Kate I got introduced to three very important people
from Diabetes Australia-Victoria DA-V Mike Janssen Community
Relations, Gordon Bunyan Vice President and Karen Passey CEO When
I approached DA-V wanting resources for me, as a partner, I was told
politely to do something about it I was briefed that a partners group was
on the wish list of DA-V for their Community Network So this is the
result and I
hope you enjoy it

Any comments, feedback, requests or submissions to the next edition would
be appreciated Contact details are on page 6 Feel free to use it

For my fiancée - love Jayson xxxx
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Who needs a blood glucose monitor, Ive got Joy - by Gordon Bunyan

In June last year, I was asked to act as the Master of Ceremonies at the
launch of the National Diabetes Strategy and Implementation Plan at
Parliament House in Canberra The invitation included a request to talk
about my life as a person with type 1 diabetes I chose instead to talk
about people with Type 3 diabetes, People who love someone with diabetes I
have had diabetes for 24 years and for 23 of those years Ive been involved
with DA, at all levels, so its a sad reflection on me and the diabetes
organisations in Australia and the world that this was the first occasion
that people with Type 3 diabetes and their needs were talked about in a
public forum Worse, it took Joy, my consort, as her father likes to
describe us in relation to each other, who pointed out to me how
inadequately her needs were being addressed by Diabetes Australia
Suddenly I
realised what we werent doing and what needed to be done

What follows is an edited version of that speech

Those who have read the National Diabetes Strategy and Implementation
Plan, will know that it has been dedicated To all people in Australia who
have diabetes, those who care for people with diabetes and people who are
at risk of developing diabetes

It reflects the commitment of many people to reduce the incidence, reduce
the complications and improve the lives of those who are affected by this
complex and relentless condition But WHO is affected by this condition?

One thing the dedication perhaps doesnt highlight is the importance of
that silent, or should I say ignored majority, the people who love
someone with diabetes They are more than carers and their significance is
often overlooked I have a concern for the plight and importance of people
who love someone with diabetes, the partners, parents, the children and
siblings The SIGNIFICANT OTHERS

There are 4 things I want to emphasis about people who love someone with
diabetes:
1 They are a medical and social resource; they should not be seen
simply as carers
2 They have an intimate knowledge of diabetes, both Type
1 and Type 2
They are a critical member of their loved ones health care
team
3 They are the most committed and generous members of the Diabetes
community;
4 They have their own special needs, but they are largely ignored

A RESOURCE IGNORED
Generally they are referred to as those who care for people with diabetes
PWDs but their role is greater than that This title ignores the
significance of the role they play and their particular needs It is my
view that people who love someone with diabetes are one of the most
neglected people within the Australian diabetes community, yet they are the
most dedicated, most concerned and on the whole most generous segment of
the people impacted by diabetes - and taken for granted the most In them
we have a resource, but it is not fully utilised Their views are rarely
sought as a person with an intimate knowledge of diabetes and that is our
loss More often than not, their opinion or contribution is sought as an
official, a board member or member of the profession

The person with diabetes is, of course, supremely important, but I believe
the SOSs, the Significant Others as Im looking to call them rather then
carer, knows more about
diabetes than many clinicians, and most about
their partners diabetes No clinician ever experiences directly the hypo,
the impact of different GI foods, the illness, the moods Yet SOSs do,
constantly But how many clinicians bother to ask the person who helps
manage his or her patient about the hypo, dealing with illness and other
issues which the PWD may not be aware or reluctant to speak of

Yet theres no recognition, no empowerment of these critical team members -
as people with intimate knowledge: No utilisation of a real store of
information and experience

COMMITTED AND GENEROUS
The commitment goes beyond everyday caring They are also committed to the
organisations and to raising funds for research For evidence of this
commitment, one only needs to look at the Board of Diabetes Australia and
JDFA to see from where the energy comes

A CRITICAL TEAM MEMBER
My doctor works a lot better for me because Joy can observe things that I
dont or cant see Shes a critical part of my management She could
replace my blood glucose monitor; she does it over the telephone Without
her the management of my diabetes would be less effective and more
expensive Yet her existence is hardly noticed
by the organisations, the
educators, the doctors and the policy makers and shes not alone

A CRY FOR HELP
They need help too I cant live as well without Joy, but who looks out for
her?

SOSs always put themselves last, excusing themselves if they admit to
needing some help, by emphasising that the person with diabetes is the most
important part of the equation But they are desperate for understanding
and real assistance and I think due recognition of the pressure they
endure No one, however, seems to have recognised the need Even where
SOSs are on Boards of organisations, no acknowledgement is made of their
own needs Im not sure they even recognise that it is something they
should be doing Its about time they did The result of focusing some
energy on them will be dramatic

The NDS heralds a bright future But dont forget to look out for and
listen in to people who love someone with diabetes because they have an
intimate knowledge of diabetes and how to live with it They are
dedicated; they should not be seen simply as organisers, money raisers and
doers - they have needs which the diabetes community should address as part
of the strategy They must not be forgotten, for the
sake of diabetes in
Australia

POSTSCRIPT:
Since that speech was
delivered, the 4th International Diabetes Federation - Western Pacific
Region Congress was held in Sydney in August this year A consumer
stream was run as part of the Congress and as part of that we organised a
workshop for people who love people with diabetes The response was more
dramatic than I expected, and more emotional than I have ever experienced
in all my years in the movement If ever there was any doubt of the
necessity of the organisations offering assistance in some form or other to
SOSs, it was dramatically dispelled The sad part was that not one doctor
or researcher bothered to attend to experience the reality check, and it
only went a very small way to addressing the needs of people who love
someone with diabetes

Gordon Bunyan
15 September, 1999
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Reality Check

Reality Check is a group of 18-30 year olds or thereabouts who live with
diabetes in Victoria We exist to give people of our age an opportunity to
meet and share their experiences with others living with diabetes in a
casual and fun environment, and also to ensure that
we have access to the
latest information in a sophisticated yet accessible form We do this
through organising pub nights and dinners, regular meetings, workshops, the
publication of a quarterly news-letter Yada Yada, a website, regular
interaction and contributions to major diabetes organisations and through
our flagship event: ISYAD - the Interactive Summit of Young Adults with
Diabetes In the eighteen months since the groups inception there have
been spin-offs formed in Geelong, Ballarat and even Brisbane We are
thrilled that Reality Check has also been the springboard from which Sugar
Support for partners of diabetics has been launched Reality Check looks
forward to continuing its relationship with Sugar Support and to watching
the development of this exciting and invaluable resource for people who are
in the challenging position of loving someone with diabetes