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Person with diabetesBorn in Ruislip in 1957.
Diagnosed Type 1 in Cornwall in 1963
Overview: Clare was brought up in a remote Cornish hamlet. Although she developed Type 1 diabetes around the age of 5, she was not given insulin until about 4 years later and was instead kept on a near-starvation diet. She rebelled for many years and only began to take care of herself after she was registered blind in 1984. She went on to gain a second BA, MA and PhD and is now a university research fellow. She has been helped by coming to regard her lack of sight as `an issue around social equality as opposed to a medical issue`.
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(1) Tell me about your backgournd
Tell me about your background.
I was brought up in a very rural
location. It was in Cornwall, and a very small hamlet with very few
houses; quite isolated. My father was a teacher, my mother was a district
nurse. I have siblings: two brothers and one sister. My sister‘s older than
me and both my brothers are younger than me, but we‘re all quite close in
age. I went to... the local village was about five... no, three miles away,
and I went to the local village school. I enjoyed living where we lived,
because I was very much, from a very early age, into horse riding and the
sea, and we were very close to the beach.
How did your diagnosis with diabetes
I was always quite ill as a child,
in that I would fall asleep all over the place. I was very thin, and my family…
we‘d go for walks on a Sunday afternoon, and I used to hate it, because I
always wanted to just sleep and drink. And one day, Mum walked over to the
doctor‘s with me, which was about a three mile walk. And the doctor took
a urine sample and said "no more sweets for you, young lady" - I
always remember that - and that was my kind of introduction to being diabetic.
He was an elderly Cornish village doctor, and I think most of his patients
with diabetes were elderly, with type two diabetes. I obviously had type
one diabetes, but I wasn‘t treated with insulin for a further four or five
years. And so, I just really remember suddenly not being allowed to eat all
these things. It was sort of long lists of things that I wasn‘t allowed to
eat. There was never really any explanation - that I remember - at all, throughout
my childhood, on it. It was things... it was done on a kind of fear, you
know: if you eat more than half a banana, you‘re gonna die; if you eat more
than two and a half slices of bread, you know, all sorts of terrible consequences
were going to happen. And that was how it was treated, really.
How old were you when you were
I think I must have been about
four or five. I can‘t remember, and I‘ve asked my parents, and they can‘t
Now, this period when you were
on diet only, how did you feel during those years?
It was awful. I had different
food from everyone else in the family, and from... you know, my food was all
weighed out, everything was very carefully weighed, and I was thirsty constantly.
I remember this, you know, this terrible thirst. I remember that I was constantly
wanting to go to the loo as well, and, you know, when you‘re sort of six or
seven and you wet yourself, it‘s very embarrassing. I remember a few occasions
like that, because I was so thirsty and I would drink so much. And basically
I wasn‘t... you know, food was a real issue, because I wasn‘t allowed anything.
You mentioned this fear element.
Was it your doctor who made these threats or your parents?
It was mainly the doctor started
it. I remember him saying... you know, it was from the very sort of first
diagnosis, it was: I wasn‘t going to be allowed to have this, ‘cause this
would happen. And then, I think my parents just sort of carried on with
it, because that was what he‘d sort of started.
You mentioned that your mother
was a nurse. Did she not suspect that more could be done for you?
I think that the only experience
she had of diabetes was probably with elderly people, who controlled it quite
successfully on diet and pills. And so, it wasn‘t until I was quite a bit
older - about… must have been about nine, eight or nine - that I started going
on insulin, and that was as a result of being so ill, really. My parents
used to take in guests for bed and breakfast, and one of those was a doctor,
and he said that I really needed to get to see a specialist. And that was
when we went up to Plymouth, which
was like a real long journey away - about ninety miles away - to the hospital.
And I saw, for the first time, a diabetic specialist and was put on insulin.
And what happened next?
I remember him - the diabetic
specialist at the hospital - being very annoyed with the GP who had been treating
me, and... so I was put on insulin. I wasn‘t put in hospital. Again, I still
didn‘t have any kind of explanation as to why I needed insulin or anything.
It was more, suddenly I was allowed… the thing I really remember was that
I was allowed to eat ice-cream, whereas I‘d never been allowed to eat ice-cream
before. So, suddenly it was, I was allowed to eat all these different foods
that I hadn‘t... Although it was still quite a strict diet - compared to the
starvation diet I had been on, it was quite lax.
Can you remember anything about
the diet? Were there diet sheets?
Oh, yeah, there was lots of exchange
sheets and diet sheets. And, you know, you were allowed to have one apple,
or, if you didn‘t have the apple you had a piece of bread or one Digestive
and two Rich Tea - I don‘t know why I always remember that - but it was still
quite controlled. And I was allowed so many units or portions for each meal.
And I remember… because, I mean, I put on a lot of weight as soon as I went
onto insulin. From being very underweight, I became overweight, and, I suppose,
from going on this quite strict diet to suddenly being allowed different foods,
I did kind of go a bit mad. And I remember eating things like Mars bars,
and things I really shouldn‘t have eaten. And I tended to eat them when I
was annoyed with my parents as well, like somehow that was going to get back
Did your diabetes cause a lot
of annoyance with your parents?
It caused an incredible amount
of family strife. Because we were... where I was brought up was about twelve
miles from the local grammar school, and there was a school bus that came
and collected us. And I‘d refuse to do my injection until the bus had gone,
I would refuse to do various things at school - activities - because everyone
seemed to be petrified that I was going to go into a coma at any moment.
I had a horse, and my parents would give me sugar cubes to carry around with
me in case I had a hypo, and I‘d feed them all to the horse, and fall off
into a coma. It caused, I think, between my siblings and I, it caused problems,
because I was always deman... you know, the one who was always getting attention,
from their point of view. I was sent to see a child psychiatrist, which I
And you say that you really had no education about diabetes. How were you
taught to do injections?
I was never taught to do injections,
and I didn‘t really ever have any education around diabetes. I would inject
myself. It would take about half an hour, and I would put the needle in very,
very slowly. The needles were generally... it was in the days of proper glass
and metal syringes, and you were allowed - I don‘t know - about five needles,
it seemed to be, a year, and you had to boil these up to sterilise them.
And my needles, you know, they‘d get little... you could feel at the end of
a needle that it wasn‘t straight, and it would scratch your skin before you‘d
even got it in. And it was, you know, it was a big family trauma every time
I had to do an injection. To start with, I was only on one injection, and
then quite quickly I was moved onto two injections: morning and evening.
And, you know, it was... I would just refuse to do it or I‘d have a tantrum
around it. And it was an extremely painful thing to do, or I would do it
in the same spot so that it became inflamed. Yeah, and it was just very difficult.
Can you remember what insulin
you were on at first?
I have no idea.
What about monitoring your sugar
levels - were you taught about that?
Oh yes, we used to do a urine
test. That was something else that was a bit of a trauma for my parents,
because I‘d refuse to do it. I just didn‘t like being diabetic. I didn‘t
understand it, and it was just something that my parents made me do. And
obviously, I was the kind of child who refused doing things, just because
I was told to do them, and I would... I think I was only asked to do it every
now and again. I remember we used to have to go up to Plymouth, to the hospital, every three or four months.
And I was always told off when I went there, because I hadn‘t done enough
urine tests and hadn‘t kept an account of what my sugar levels were. But
again, no one ever... I don‘t remember anyone ever explaining to me what the
point of it was. And then, for a long time, I was told that I had a low renal
threshold, which apparently meant - this is how I understood it as a child
- that they weren‘t ever very accurate anyway, so that just confirmed to me
- what was the point of doing them?
Can you remember how the urine
tests were done?
Oh, yeah. You had to pee into
a little receptacle of some sort, and then you had to put so many drops of
water and so many drops of urine and a sort of a test strip, and then you
had to match them against a colour bar. But I don‘t remember it very clearly,
‘cause I didn‘t do hardly any.
Were there any other children
with diabetes at school?
No. My parents tried to get
me involved in Balance, the magazine, and the British Diabetic Association,
but I was never very interested in this. It always seemed to me… I always
refused to have anything to do with it. Occasionally I was forced to go to
these like Christmas parties for other diabetic children, and I really disliked
it. And they did summer camps, and I just had this idea that we‘d all be
lining up for our injections, and I didn‘t want to have anything to do with
it at all, so I didn‘t, really.
What about at school - how did your fellow pupils react?
I don‘t really remember fellow
pupils acting particularly differently or anything at junior school. I remember
much more about it at secondary school. I don‘t have any clear memories of
it at junior school.
What about the teachers - how
did they treat you?
Again, I can‘t really say that
I remember being treated any differently at junior school.
Tell me about secondary school
At secondary school, I was treated
very differently. I had a different lunch from everybody. But, by the second
or third year of secondary school, I took my own lunch in, but to start with
it was a different lunch. And the school cooks did not understand diabetes.
I remember having arguments with them when they gave me canned fruit in syrup,
not because I didn‘t eat things like that - because I didn‘t do anything I
was supposed to do - but I knew that they weren‘t supposed to give it to me.
I remember the staff being very nervous. I remember not wanting to play hockey,
so I said "oh, if do that, I‘ll have a hypo and go in a coma, and it
will be all your fault". And that seemed to be kind of a common thing
that I used to say. If there were exams, I‘d say I‘d forgotten my injection,
and they‘d have to drive me all the way home, until they sort of thought of
the idea of keeping spare insulin and needles and a syringe in the school
safe. I know I was the only child who had milk at break time, for some reason,
because of my diabetes. I don‘t quite know why I was given that, looking
back on it. And I don‘t really remember it being a problem with other children,
but I do remember it being sort of seen as different by members of staff,
and that they were slightly nervous of my medical condition.
And you mentioned that you were
sent to an educational psychologist. Why was that?
Because I was still refusing
to do... because I was difficult, I suppose - you know, not wanting to do
my insulin. At the time, I didn‘t see why I should have to go, when my siblings...
and I thought, particularly with me and my sister - we used to argue like
anything - but I never really understood why I had to go. I didn‘t like the
man. I remember that they sent me to an adult one in a hospital, which was
quite frightening. And then, after that, I was sent to the child psychologist,
which was very close to the school, and so I used to have to go there once
a week. And I carried on going there up until I was about fifteen.
Did the psychologist link your
problems with your diabetes?
All I remember about the psychologist
is that I found him a bit creepy. And I used to do things like draw sweets
- ‘cause he‘d asked me to draw a picture. And I was very angry about having
been sent there, so I‘d think "oh well..." - and I‘d draw loads
of sweets, and then put a big cross across them made out of syringes and things.
But I knew perfectly well what I was doing and why I was doing it - it was
just to annoy him, because I always found him a bit creepy. And… well, I
later found out that, a few years after I‘d been seeing him, that he actually
ran off with one of his child patients on her sixteenth birthday, which just
kind of confirmed my idea that he was always rather creepy.
Can you talk about your teenage
social life? Did you go in for smoking, drinking, drugs?
Yeah, that was me. Yeah, it
was all of those things. I started smoking, drinking, drugs, any... you know,
it was... Well, perhaps I should also mention before that, was that when
I was seeing the child psychologist, they put me on Largactil, and I was -
which is, as I understand it, a kind of liquid Valium - and I took Largactil
for a long time. And I have very clear memories of reaching up into the cupboard
where it was taken, and any time I got annoyed, I would just go and take a
swig of this sort of thick brown liquid. So, I think, you know, my druggy
years were kind of affected by having taken these things all along anyway!
But yeah, no, as a teenager, I did everything that teenagers do. Didn‘t have
it... because of where I was brought up, and it was so rural, we were always
dependent on older people, really, to take you around in cars. And so, older
people were into... you know, it was very much sort of surfing, hippy kind
And how did you manage your diabetes during your teens?
I didn‘t. I just totally ignored
it, and just ate anything I wanted to, injected without testing blood sugars,
and just totally and utterly ignored it.
And how much contact did you
have with the medical profession?
As little as I could. I would
go up to the hospital... I can‘t really remember. I‘ve got a feeling it was
about once every four months, but if I could‘ve avoided going for any reason,
I would. And I don‘t really remember it having much of an impact, and I used
to think people who talked about diabetes having a big impact on their life
were just making a big deal over it. By now, it had become nothing for me,
because I just ignored it.
And did you have many hypos?
I never had any controlled ones,
that I‘ve witnessed happening in hospitals now when people are first put on
insulin; there was nothing like that. The first time I had a hypo was obviously
when I was on insulin, and I didn‘t have anything like that before. And I
think the first time - I can‘t honestly remember if it was the first time
or one of the early times - I went into a coma, and I just went... just started
feeling ill and went into a coma and didn‘t know what was happening. And
then, after that, I went into quite a few comas - or it was unconscious, rather
than comas, I suppose - as a child, usually by going out on horseback or being
somewhere where I didn‘t have any glucose with me, and generally being irresponsible.
Then, when I totally, you know, as a teenager, and I totally ignored my diabetes,
I think my sugars were always probably rather high, and I didn‘t have hypos,
or very occasionally. But when I left school and I moved to London and I went to college, I did have hypos,
but I was always... I did spend quite a lot of time in hospital, whether it
was because I‘d broken my arms badly - horse riding accidents - or I got gastroenteritis
very badly, and obviously these things really upset my diabetes. And I seemed
to be admitted to hospital very easily, as far as I was concerned. Practically
every time I had anything to do with the medical profession, they seemed to
want to take me into hospital, where I would have lots of tests. As a teenager,
I was also diagnosed with an under-active thyroid gland, and that took quite
some time for people to diagnose, and I was told I would now lose weight.
Throughout my teens I was overweight, and it was a sort of a problem for me,
but I wasn‘t ever given any real help with it, from a diabetic point of view.
But I was always constantly being told "now you‘ll lose weight",
and I never did. But I do remember, like when I moved to London,
that I again, I did spend... most London
hospitals I‘ve actually spent time in. I can‘t quite remember how I got admitted
to them all, but I did spend quite a bit of time on various medical wards,
which were always very, very depressing wards, and full of elderly people
Did your diabetes affect your
choice of what you did after you left school?
Absolutely no; that‘s, you know,
end of it, really. I don‘t think it had any impact on what I did. I went
to university, and then I went and lived abroad for about twelve (slip
– since corrected to seven) years.
me about your time abroad.
I was in southern Europe:
in Italy for a while, and then for a long time in
I was under absolutely no medical supervision. Every now and again I‘d come
back to England and stock up on insulin, but any other drugs, like, you know,
Thyroxine and things, you could just buy over the counter, so... And I would
just sign on as a temporary patient with some GP and get loads of insulin,
and then go back to where I was living, so absolutely no medical supervision.
And really, again, I was just ignoring my diabetes, and it just sort of had
to fit in with my lifestyle, and so it did.
What was your lifestyle while
you were abroad?
Well, I was teaching English
as a foreign language, and travelling to different countries, and drinking
and socialising, and just being on one long holiday, it felt, really, I suppose,
for quite a few years.
And how old were you while you
I suppose from the age of around
about twenty one, twenty two to thirty five. I say that my diabetes didn‘t
sort of have any impact on me, but there were things I didn‘t do, because
I was diabetic. Like, a lot of people I knew were taking LSD, and I didn‘t
think it would be... I didn‘t really understand how LSD worked, but I knew
it worked on your sugars, and I didn‘t want to sort of have a bad time. But
I did meet someone who I thought was very silly towards his diabetes, because
he used to do all sorts of drugs, and say "oh, I would just make sure
my sugars were really high before I took them, so that I wouldn‘t have a hypo".
But I remember thinking he was silly, because he had all these enormous boils
and blisters on his skin, and so I thought "oh, he obviously doesn‘t
take care of himself". But I don‘t think I was particularly, but there
were just certain things I didn‘t want to do, because I thought it might be
irresponsible towards my friends, I think.
Did your diabetes have any impact on your life while you were abroad?
Only in so far as that I had
a very sort of strict understanding that I had to do my insulin at certain
times, and then I had to eat at certain times. So, in some sense, you know,
I was aware that I had to eat at... you know, I didn‘t just miss meals or
miss doing my insulin. I always just carried on doing it, but I don‘t think
I ever tested my sugars when I lived abroad, ever. And so, from that point
of view, it had an impact. And then, in about 1982, I suppose it would be,
I developed... well, what I experienced was just like a black line in my eye,
and I thought that I had an eyelash stuck on my eye. And I kept getting up,
asking people to see if there was something in my eye. And in the end, just
by chance really, I happened to go to see this eye doctor, with my then Greek
boyfriend who I was living with. And he just started like this whole sort
of hysterical bit about how I had to get back to England
and I was losing my sight, and blah, blah, blah. So, I came back to England the following day, and that was to Moorfields
Eye Hospital I came back
to. And they said I had diabetic retinopathy. And I then spent probably
the next two years, really, in and out of Moorfields Hospital, going back and forth
non-stop. And... well, I spent a long time in the hospital, and I had an
awful lot of operations and I had an awful lot of lasering done to both eyes.
And basically, I went in there with perfectly normal vision, with a slight
black line on one eye, which turned out to be a haemorrhage. But as far as
I... the way I experienced it was that I went into a hospital with full sight,
and came out a year and a half later - well, obviously I wasn‘t in there continually,
but - registered blind, and that was a bit of a shock. Although, you know,
I… throughout my childhood I was worried that I would lose my sight, because
that was one of the things that was always sort of said, that you‘ll lose
your sight if you do this or do that. So, it was a bit... losing my sight
was strange, because also, then, in my teens, if I did see a doctor, I‘d ask
about it. And they‘d say "oh, well, there‘s no evidence that says if
your sugars are constantly high you‘re going to lose you sight or have any
other complications. We just think it‘s better for you". So, I always
just took this as "oh well, they don‘t really know, so I can do what
I like". But it was a bit of a shock to lose my sight. And, well, obviously
- well, not obviously if you haven‘t lived in Greece
- but you don‘t want to live in Greece
if you‘ve got any kind of impairment, because they think you should be locked
up! But, you know, when I was in Moorfields Hospital, for the whole time
I was there, or going in and out, I really understood - and I‘m not a stupid
person - that they were going to cure me, because that‘s the kind of way they
talked about it, and that they were going to make it okay. So, I wasn‘t particularly
nervous - I really thought they were going to make things okay. And one day...
I mean, I did have a lot of operations, and every time they looked at my eyes
after the operation, they‘d say "oh dear", you know, "the band‘s
come off" or "this has happened, we‘ll have to try this next".
But they always seemed to be: they were going to get it right. And then,
one day, the doctor, just as… sort of as he was passing, more or less, said
"oh, by the way, we‘ve registered you blind today". And that was
a complete and utter shock to me. And I think I swore, and, you know, and
he said... and I said "what?", and he said "well, yes, it‘s
about time you started facing some facts". And I was just... I mean,
my initial reaction was just fury that they hadn‘t given me any facts to face.
I mean, they‘d been - to me - they‘d been lying to me, and just… I mean, I
just assumed that they were going to cure me, because that was the impression
that they‘d given me. And so, yeah, it was a real shock. And it was also
a shock to me that there wasn‘t anybody... you know, they register you blind,
give you a white stick and a radio - for some unknown reason - and you‘re
on your way. And, you know, it‘s very much seen that "well, there‘s
nothing more we can do. Off you go, don‘t bother us anymore". And that
shocked me, and still shocks me, as, you know, as much as the whole sight
thing. But you‘re very much seen as I was a failure in their eyes, and they
didn‘t want to, you know, know anymore.
You‘ve mentioned a sense of failure, or of being blamed, all the way along.
Is that true?
Yeah, I think... you know, from
a young child, you know, up until I lost my sight, really, everything‘s seen
as being your fault. If you go into a coma, if you... You know, anything
that happens medically to you, it‘s because you haven‘t taken care of yourself,
or that they have... well, I don‘t know... I‘ve never liked... My experiences
of the medical profession have never been positive. The most positive time,
I suppose, was when I was initially in the eye hospital and they were trying
out new techniques on me, and I was a very interesting subject. I mean, I‘ve
had eye students looking in my eyes - one doctor telling me to look one way,
another doctor telling me to look another way. And they obviously, you know,
just see you as an interesting eye or interesting eyes, rather than a human
being. And once they were no longer able to do all their experiments or whatever
on me, you know, they just didn‘t want to know anymore. And there was no
kind of social help, really - you know, no one to talk to, no one to sort
of und... so that I… you know, you understand what was happening to you when
you lose your sight.
And how did you adjust to losing your sight?
Well, as I was saying before,
I was living in Greece
at the time, and I had a Greek partner who I was living with. We finished
very quickly after I lost my sight, because he felt this was something that
he was experiencing rather than me, and it was very unfortunate for him.
So, that was that. I came back to England
and decided to go back to university, because I wanted to be able to offer
other people - who might be going through things that I was going through
- some kind of help. So, rather strangely, I chose to do a psychology degree,
but that‘s because I understood psychology would be about Freud and Yung and
things like this. But, in fact, it wasn‘t, and it was far more about maths,
and I changed and did sociology. And I developed a political understanding
of impairment and disability, and that‘s what‘s helped me come to terms, if
you want, with losing my sight.
What practical help did you get?
Very little. I came back to
university, and I didn‘t know that I was entitled to anything, as someone
who was registered blind, and I didn‘t ask for anything, so I didn‘t get any
practical help at all. I had a white stick - I didn‘t have any training in
mobility or in using it or anything. But after three years, I applied for
a guide dog, because I‘ve always liked animals and dogs, and it seemed a good
reason, and so I‘ve had a guide dog ever since.
How did you manage your university
Well, I think I was a typical
mature student, where I was really into the work, but it was very difficult
and I struggled to start with. I really didn‘t know that I was entitled to
anything, so I didn‘t have any specialist equipment for the first two years.
In the third year, I contacted the RNIB, who arranged for someone to come
and see me. And I then got - it‘s quite a few years ago, so it wasn‘t exactly
a computer - but it was a kind of computer, but again, I didn‘t have really
any training in how to use it. And as my political understanding of disability
increased, I realised, you know, that I was entitled to certain things. And,
you know, I think I now have the support that I‘m entitled to; certainly financial
support. But I didn‘t... you know, people seemed to think that because...
if you‘re a middle class educated person, then somehow, you know, you lose
your sight and you‘re just somehow going to know all these things. But I
knew absolutely nothing about what I was entitled to or not. And although
I had a social worker, because - I don‘t know whether it‘s even still true
- but, at the time, if you were registered blind - it‘s from a historical
accident, really - you automatically got a social worker, who came to visit
me once. And she just seemed to think that I knew everything, and I didn‘t.
In fact, she asked me to come and meet this other woman who was losing her
sight, because I‘d, you know… be helpful for her to meet me. But then, when
I met her, I learnt far more from it, because the social worker was telling
her things that I didn‘t know - things I was entitled to, disability living
allowance and things like that.
Did you have readers?
Nope. One of the lecturers was
very good and he‘d put things onto tape for me, but I didn‘t have anything
like that. But it‘s also quite difficult, because, you know, if you‘re used
to studying visually, I find - you know, you can make a funny story of it,
but - listening to a tape can be quite difficult to assimilate information
in that way, and I... things would put me to sleep. Listening to academic
text on tape, I found extremely difficult. And I used to get things blown
up for me. The library were quite good, once I‘d got to know them. But it
was always done on a ‘who you know and what they can do for you‘. None of
it was done because it‘s your right to have this. It was always like thanking
people endlessly for doing things for you. And the RNIB had a lot of books
on tape and stuff, but again, you know, I found it very, very difficult listening
to stuff on tape.
You said things blown up for
you - you did have some sight then?
Yeah. Things were blown up,
and then I had a magnification system as well. I mean, now I do it all on
computer, but I still can read with a large magnifying glass.
I think this lack of recognising your entitlements is of historical interest,
so can you say which years this happened at university?
I went to university in 1986.
I did an undergraduate degree - although I already had an undergraduate degree,
I did another one. And then I did an MA and then I did a PhD, which I finished
By 1996, had you recognised your
Yes, I think after four years...
when I was doing my MA, I think I started getting a bit ‘on the ball‘, if
you like, about what I was entitled to, and seeing my lack of sight as an
issue around social equality as opposed to a medical issue. And that‘s really
been a much more helpful way to understand impairment on a personal and political
And how was your diabetes controlled
during the period of taking these various degrees?
Right, well, when I was in Moorfields
Eye Hospital, my diabetes
- which staggers me, really, looking back on it - but my diabetes was very
badly controlled, because they were eye doctors, they weren‘t medical doctors.
And they told me that I would have to have a district nurse coming round to
see me twice a day, or however many injections I was having a day, to do my
insulin. Well, you know, my mother was a district nurse - I know that they
don‘t do things to a certain time. You could be waiting all day for them
to come round. And, you know, this was a total lack of independence. And
even now, as far as I‘m aware, there are no syringes or pens, as they now
are, that are designed specifically for diabetics with a visual impairment.
The ones I use click, but the actual insulin doesn‘t particularly fit into
that pen properly, but it‘s the only pen I can use ‘cause it‘s got the clicking
sound, which I just think is horrendous, really. I‘m sure there must be a
human rights issue here, because, as far as I understand, the most common
reason for people with sight impairments under sixty, is caused through diabetes
But I think it was a kind of wake up call for me, personally, when I lost
my sight, that if I didn‘t want to have all the other complications, I‘d better
start looking after my diabetes. And my diabetes has been well controlled,
more or less - you know, I would call myself a stable diabetic - since losing
my sight in 1984, or whenever it was.
And how have you kept it under
Well, I test my blood sugars
very regularly now - about four or five, or even more times a day. I change
my insulin according to my blood sugars. I‘m very careful about what I eat.
Up until relatively recently, I‘ve done quite a lot exercise, which I‘ll be
starting again, but I‘ve got a heart condition, now, as well, so that sort
of put that on hold. And, you know, although it is relatively much better
controlled, this doesn‘t mean that I haven‘t had various hypos. Sometimes
I‘ve been on insulin that just doesn‘t suit me. I have at least six injections
a day now. And when I was at university, I was under my first diabetic consultant
who talked to me as an adult, rather than as some kind of wayward child.
And he‘s had a big influence on my understanding of diabetes and on my treatment,
although I understand, now, that not everything he told me is generally seen
nowadays as correct. But he was the first person who helped me understand
what it was all about, and what the complications are and why they arise.
You say that perhaps he taught
you things which would not now be accepted. Can you remember what those were,
just for the historical record?
Well, it‘s really more to do
with having been on the course that I went on relatively recently. Things
like, he would say "oh, well it doesn‘t really matter if you do, you
know, one or two extra units, because, you know, every time you do an injection,
a bit escapes. It‘s a bit… you know, it‘s never that exact a science".
Well, from my understanding now, it is actually much more exact than that.
So, that‘s the main thing I remember him telling me that sort of isn‘t necessarily
And what did you do after you‘d
got your PhD?
I worked in the university sector
for a few years, and then in 2000 - round about 2000 - I moved south. And
since then, I‘ve been the manager of a service user organisation, which works
with disabled people and people who are long term users of health and social
And what kind of medical care did you get after you moved south in 2000?
Well, to start with, I wasn‘t
at all happy with it, because I went to a large hospital. And I didn‘t see
the same doctor, I saw them very infrequently, and I didn‘t feel I had any
kind of personal relationship with the consultant, which, for me, is very
important. I then moved, because I live on the sort of edge of the county,
so I come under... it would appear two sort of catchment areas, if you like,
so I moved to the other catchment area. But it was very difficult for me
to get there. As someone with a visual impairment, obviously I don‘t drive,
and the only means really open to me was on hospital transport, which I just
found so sort of humiliating that I just couldn‘t do it. So, I went back
to the original hospital, but this time I went back sort of armed with insisting
what I wanted, and insisted that I saw the chief consultant each time. And
now I see him each time, and I have a good relationship with him and I find
him extremely helpful.
What about diabetic specialist
nurses - have you had anything to do with them?
Yes. I have never… up until
I moved here, I‘ve never had anything to do with diabetic specialist nurses,
because I always felt that I knew as much about it as they did, because I‘d
lived with it. And, you know, it just seemed to me that things came into
fashion and out of fashion around diabetes. But when I came here, the consultant
asked me if I wanted to go on a course, which was called Insight. This was
a course that was run by a dietitian and the diabetic specialist nurse, and
I had to say I was quite pessimistic. I thought it might all end up being
rather a waste of my time, but I thought I‘d give it a go. And I was very
pleased with the course and I‘ve learnt an awful lot from it, and it‘s resulted
in my diabetes being far better controlled, I think, than it‘s ever been in
my entire life.
Can you say when the course was
and how it was organised?
It was in autumn 2003. It was
for three half days and one full day, over four weeks. And we... there was
a group of five of us, who were all long-term diabetics of ranging sort of
years - I think I was the longest identified diabetic. We were all insulin-dependent,
and we… I think most of us had just gone onto the relatively new insulin called
Lantus, which, as I understand it, allows for sort of twenty four hour background
cover without really peaking. And we started the course really looking at
all the assumptions that we had around diabetes. And I hadn‘t realised how
much of the stuff that I had been... that had been drummed into me as a child,
I really still carried with me - things like the exchange ratios between foods.
I think one of the main things was that before… well, all my life it has been
that you do a certain amount of insulin and then you eat according to the
insulin that you‘ve done, which is a real pain if, you know, if you‘re not
hungry or whatever. Whereas suddenly it was the completely different way
round, and nothing was barred. You could eat anything you wanted to, and
you did the insulin... the insulin was adjusted according to that, which doesn‘t
sound like a very big deal, but in practice, it‘s a huge and revolutionary
way of thinking about food. I‘ve always hated the fact that you have to eat,
even if you‘re not hungry, and you have to eat so much carbohydrate at certain
times. And it‘s not a hundred per cent fluid, obviously, and you still want
to eat healthily and stuff, but if you don‘t feel like eating much, you don‘t
eat much, which is, you know, a huge change.
And what about if you feel like
eating a lot?
If you feel like eating a lot,
you can eat a lot, and you can eat anything. I mean, you know, the idea of
being able to go into a restaurant and having a dessert, if I wanted to… I
think for the first sort of week I kind of did eat desserts, but I don‘t actually
have a sweet tooth at all, so it hasn‘t really made much difference to me,
but... although I did have a very large box of chocolates given to me for
Christmas. And I still felt guilty when I ate them, because like chocolate
is like - you feel guilty, if you‘re diabetic for forty odd years and you‘re
suddenly allowed to eat chocolate, you... But I don‘t actually like it that
much, but, you know, I am allowed to eat these things if I want to.
And how do you work out how much
insulin to take?
Well, I‘m not very good at maths,
and it‘s… Basically, you just count the carbohydrates, and you have a particular
ratio - which is unique to you, depending on the overall amount of insulin
that you normally take - a ratio of carbohydrate to insulin.
And how did everybody on this
course find this maths?
Well, I don‘t think I was the
worst, but I certainly wasn‘t the best! It‘s quite... if you‘re taking one
unit of insulin to ten grams of carbohydrate, obviously that‘s quite straightforward.
But now I‘m taking one unit of insulin to fifteen grams of carbohydrate, which
is less straightforward. And I think my maths is improving, but I still have
to sort of look things up in my carbohydrate book and weigh quite a few things.
I think, because of my sight, it is more difficult for me to sort of think
"oh, this is about the same size of portion that I had yesterday of pasta"
or whatever, because I can‘t actually see it like that, so I think there are
issues around my visual impairment and working it out. But I do… I mean,
if I‘m at home I tend to weigh things, which I don‘t think I would have gone
on the course if I‘d known that, but actually, I don‘t find it an issue at
all, and, you know, it just frees things up incredibly.
Did the course address the difficulties
you might have with visual impairment?
Not really. I think they tried
to, but I don‘t think it really did address it, no. I mean, they did very
good things and put a lot of stuff into large print for me, and they did the
best they could, but I think there were actually sort of more deeper issues,
if you like, than just accessing the material. I mean, for one thing, the
carbohydrate counting book is bloody... I mean, it‘s tiny, the print in that.
And I rely very heavily on my partner to do a lot of the maths for me.
Did you find it worked well to have three separate half days and a full day?
Yes, I thought it was excellent,
because you had a week in between each session to try out how things were.
And we had to keep a food diary and write down the carbohydrates of the food
we ate and then the insulin we took, and whether or not we had to take a correction
dose. So, you had a whole week‘s kind of information to look at the following
week with the tutors, which was really good. And you could see what was working
for you and for others, because we all looked at each others as well, and,
you know, what mistakes were made by us and things like that. And it also
brought home to me, things that I had always known through my own experience,
but which had never been recognised by anyone in the medical profession before.
And I found that... well, it gave me a lot more trust in the two people who
were running the course than I‘ve ever had for the medical profession, to
be honest, because usually, if it‘s not been proven scientifically, then what
you know through your own experience is just… they don‘t treat it as valid
knowledge at all. I‘ve always known that stress affects my diabetes; always
known that. And I‘ve always been told, up until recently, that that‘s just
rubbish. Now I understand why it affects it now, but, you know… And the
course also, we had this little board that had… oh, I don‘t know, because,
again, it was a bit of a sight thing for me, but it was a very visual way
of understanding how diabetes and the hormones and, you know, what was happening,
and how things - cells - were unlocked and all this kind of stuff. But it
was a very easy way of understanding diabetes, and the different impacts of
alcohol on diabetes, and stress, etcetera. I thought it was a very good course.
You said it was a revolution
for you - almost reversing what you‘d known before. Was that true for the
other people on the course?
I think particularly for one
of the other women, who had had it for a very long time. There was some...
a younger woman, who hadn‘t had it quite as long - I don‘t think it was particularly
for her, and I think her understanding of diabetes was quite different from
ours. I think, for me, it was really... things that you‘ve just been told
as a child but no explanation, but it‘s just been sort of drummed into you
what you must and mustn‘t do - those sort of things, it was very difficult
not... you know, if I didn‘t want to have lunch, not to eat lunch. I still
find... I mean, I couldn‘t not eat lunch, because you have to eat lunch.
And it‘s still very difficult, that kind of not worrying that… you know, normally,
I must have it by a certain time, and not worrying about it.
If you don‘t want to eat it, you don‘t have to; it‘s... yeah. You don‘t realise
how engrained these things are, until you try and stop doing them.
Can you talk more about the effects
of stress, in your own experience throughout your life, and what you learnt
on the course?
Well, I‘ve always felt that a
small amount of stress and your sugar levels go lower. A large amount of
stress and your sugar levels really soar high. Now, I‘ve kind of known this...
I‘ve known it as long as I‘ve been aware of being stressed, and I have to
say that my awareness of stress levels has certainly increased since I‘ve
got a visual impairment, and I do get stressed. Particularly, I travel an
awful lot, and I don‘t enjoy travelling. And, you know, our train services
are rubbish, and I have to rely on booking assistance ahead of time, and quite
often it‘s not there, and then suddenly you have, you know, an unannounced
stop and you‘ve got to all change trains. Things like this, I find extremely
stressful, and my sugar levels just soar after that, and it takes quite a
while to get them back down again. And as I understand it, it‘s a bit like
the sort of fight or flight thing, and adrenaline is produced if you‘re that
stressed, and that pushes your sugars up... yeah, basically.
Had you mentioned this to medical
staff before you went on the Insight course?
Yeah, but it had never really
been... people didn‘t seem to regard it as an issue. Some of the things that
I‘ve found... you know, it‘s like I have neuropathy in my feet, I have a sight
impairment in my eyes, I have a heart condition, and I‘m diabetic, but that
means you have four different medical people looking at you. And I‘ve been,
at times, where different... you know, it‘s not just that they‘re in different
hospitals, they‘re in different parts of the country, and even, at times,
when they‘re in different countries. You know, you‘re never seen holistically.
And for the first time, during this course, I understood... you know, I was
talking to people who seemed to understand you as an entire person, and they
were looking at all aspects of you, and that, for me, was, well, very positive.
Has that continued since the
Well, not quite, because since
the course ended, I had to go and see a heart specialist. Now, I... you know,
you end up feeling that you‘re kind of stupid, because you don‘t know the
connections between heart problems and diabetes. But I‘ve not had them ever
explained to me. They weren‘t explained on the course either, particularly,
but I do think that people on the course perhaps didn‘t like going down the
"what are the complications?" road, because I was sitting there
with a guide dog. And I think other diabetics find that a bit nervous - they
get a bit nervous about it - so we didn‘t really talk that much about complications.
And so, going to see the heart specialist, you know, more or less the first
thing he said to me was "well, someone your age, who‘s had diabetes that
length, well, this is what we‘d expect". And, you know, he was very
nice, etcetera, but, you know, that seemed to be the kind of... and suddenly
it‘s like "oh god, what else is going to go wrong? And why haven‘t I
had this explained to me - why don‘t I know this?". And, you know, again,
he‘s not really... he was seeing everything from a heart specialist‘s point
of view. So, whereas if I get cramp in my legs, the neuropathy guy sees it
from a nerve point of view, he sees it from a heart point of view. And no
one‘s actually... you know, I‘m just looking... everyone‘s looking at it from
their specialist point of view, rather than from me as an entire person.
I mean, as it turns out, the heart condition isn‘t particularly much - it‘s
just brought on by stress - but, you know, and there we go on.
So, can you go back to the people who ran the Insight course for this holistic
I can go back to the diabetic
specialist nurse, and I‘ve gone back to her since the course. I‘ve seen her
at the clinic - I arranged to see her once before I saw the consultant - and
I phoned her a couple of times. And it‘s very good to talk things through
with her; things like changing... you know, if suddenly your... I mean, for
my example, I suppose, was my sugars were always high in the morning. And
it didn‘t matter how much long-acting I did in the evening, my sugars were
high in the morning. So, we worked out a way of dealing with that over the
phone, and now they‘re fine. And it‘s obvious, once I started talking to
her, what I should be doing, but it‘s good to have someone who knows about
it who you‘re talking it through with.
What would be your ideal way
for a diabetic patient to be treated?
Well, I‘d like to be able...
you know, if I... I now have quite a few complications, having had diabetes
for so long, and I would like to be able to go to one place and see a specialist
who could… you know, who saw me holistically. And I would like - like I can
with the diabetic specialist nurse - to, you know, phone up and discuss it
with her. But I think she, personally, is an exception, because I have had
contact with other diabetic specialist nurses in the past, and I have always
felt that I know more about it than they do, and, in fact, they‘ve often said
that I know more about it than they do. And that, I don‘t feel, really fills
me with much confidence.
Can you describe a typical day
in your life now?
Well, I suppose I‘d have to give
two typical days, because one would be where I‘m working at home and one would
be when I was travelling. If I‘m working at home, a typical day is to get
up about six thirty or seven, test my sugars, do twenty four units of Lantus,
eat a bowl of All Bran with half a banana and skimmed milk and a cup of coffee,
and do the appropriate amount of NovoRapid insulin. Take a whole load of
pills: I take... oh, I take some for heart, some for blood pressure, some
for kidneys. I take a lot of pills - some for thyroids, Amitriptyline for
my legs, Simastav… oh, I can‘t remember all the names of the pills. Anyway,
then I have breakfast, have a shower, go out with my guide dog. Because I
know where I am, I need to work my guide dog when I‘m in crowds of people
more than when I‘m in the rural area, so I take him for a walk in the mornings.
Come back. And then, for most of the day, I‘m sort of answering telephones
and writing reports, so I‘m very much at the computer. I go out for the...
At lunchtime, I‘ll probably have a piece of bread, hummus, something like
that; do insulin - NovoRapid insulin again. And then, in the evening, take
the dog out again, have food - something like a bowl of pasta. I don‘t eat
meat, and try not to eat too much dairy products, but eat quite a bit of fish,
pasta, rice, and do insulin accordingly. Have a few glasses of wine, and
then do more insulin, last thing at night, of Lantus.
And what about a travelling day?
Well, usually I‘m travelling
from here into London, and that involves...
can be quite an early start. And so, it‘s the same sort of routine, to do
with my insulin, but my sugars can - or do - have a tendency to go very high
in the mornings, if the journey hasn‘t gone well or if I‘ve got a very stressful
meeting, or something that... you know, I‘m going somewhere I haven‘t been
before. I find that quite stressful, from a visual impairment point of view.
And so, I quite often just have to do insulin to bring my sugars down, and
not really bother with lunch. And then the same for the train coming home.
Yeah, that‘s the only difference, really, in terms of the insulin I take -
my sugars tend to be higher on those days.
Do you need to have emergency
rations with you?
I always carry glucose on me
and some biscuits.
What have been the main changes
in technology that you‘ve seen over the time you‘ve had diabetes?
The blood monitoring equipment
is very good. I‘ve just received a new one, which only takes five seconds
to measure your blood. I‘ve got all sorts of equipment, so I can do diabetes
management software on my computer. So, from the monitor, you know, it can
give you graphs of various descriptions to see how your diabetes is, and the
patterns of your bloods sugars, and what have you. So, I think that‘s been
a huge change. Obviously, there‘s also been a huge change in the delivery
of insulin. I used to have to... you know, as a child, there always seemed
to be pans of things boiling to keep syringes and needles clean, and… Whereas
now... one of the things I learnt on the course was that I should change my
needle far more than I do. And I still don‘t do it enough, because I was
brought up that needles were these really, you know, scarce things that you...
and you used about five needles a year, and you just circulated them round,
sort of boiling them all the time. And I was using a far too big a needle,
apparently, when I got on the course, and I‘m now using a much finer one.
And, you know, I said I changed them when I changed the insulin cartridge,
and this sort of shocked everybody, because apparently you can change them
every time if you want. But I still have... because, then, I had to buy them.
The only time you... at first, when you got needles - the sort of new plastic
things - you had to buy them, and it was only when they changed the law, so
that junkies could get needles if they had HIV and things, that we got needles
free as well. So, in my life, it‘s been relatively new to be able to sort
of be so free with needles. So, anyway, that‘s been a big change. But the
actual syringes - these pens - are very, very different from the old way of
drawing up. It makes, actually, quite a big difference in your life, because
I can be in a restaurant - I don‘t even have to go to the loo to do an injection,
they‘re so small and discreet. You can even do it through your clothes if
you have to. And that‘s a huge difference from sort of, you know, knocking
a glass and metal syringe to get the air bubbles out, et cetera.
And have you observed any differences in the way medical staff treat patients
over the years?
I don‘t know whether it‘s a way...
because, if I think about the times that I‘ve been in hospital - and I have
spent quite a lot of time in hospital, for various reasons - I can‘t say that
I‘ve really noticed a huge change. I think some medical staff have really
changed the way they treat patients, but others haven‘t, and that‘s all I
can say on that, really.
What about changes in the National
Well, there weren‘t, as far as
I‘m aware, diabetic specialist nurses when I was younger, so that‘s been quite
a change. I don‘t know how much of it is a change from the actual medical
staff, or how much of it is a change from me in what I expect. I‘m much more
demanding than I used to be, and I expect people to treat me as an equal.
My title is Doctor, and I use it a lot in a medical situation - not a medical
doctor - because it gets me respect in a hospital, which I think is rubbish
- I think every patient should have respect! But I do think it really makes
a difference on whether or... on who you are, whether people treat you with
respect or not. I think, as a white middle class woman with the title Doctor,
I get a lot more respect than an elderly Asian woman would get.
What about changes in organisation
- things like waiting times?
Well, sometimes... well, no,
not real... generally, you still wait a long time, and you always have done.
Hospitals are places where you sit and wait.
And have you noticed any changes
in attitudes to diabetes in society over the years?
Well, I think, because I never
felt… as a diabetic, I never really felt particularly discriminated against,
or that people had sort of strange attitudes about me because I was diabetic.
But then, I quite... I do a lot of training around disability equality issues,
and sometimes, some of the things that people say around diabetes - I mean,
now - really staggers me. I mean, one group - and they were actually health...
they worked for a health authority - said that if they had somebody with diabetes
working with them, they would want somebody shadowing them all the time, in
case they went into a coma. And this was only recently. So, although I feel
that, you know, generally, as a diabetic, it‘s a hidden impairment, and it
is very, very common. I suppose, because diabetes is more and more common
- and it‘s common, as I understand it… it‘s more common in type two... sorry,
that type two diabetes is increasingly common because people lead unhealthy
lives. Now, this is very, very different from type one, and I really resent
the fact that all the time we hear about type two diabetes, and people think
I‘m diabetic, and do they see me as leading a very unhealthy life and it‘s
my own fault? That really bugs me. Also, it bugs me, because type one diabetics
is also… there‘s more of us around. But that‘s because, in a way, it‘s because
we‘re a success story, and there‘s more of us having children, and there‘s
obviously a genetic factor, as I understand it, in type one diabetes. But
all the sort of the general public‘s understanding of diabetes - and the more
that we hear - is generally about type two diabetes, which I think should
have a completely different name.
Do you think people discriminate, at all, against people with diabetes?
I think they do. I think there‘s
a general level of ignorance around all impairments, and diabetes isn‘t an
exception. I think people have a lack of understanding of the barriers that
people experience, whether they‘re organisational barriers... One of the
things I used to find very difficult was always being the one having to say
"I need to eat", and people automatically think it‘s because you‘re
greedy. I think, examples in... work I‘ve had as a student, where it was
important that I had my lunch breaks within a normal - what‘s seen as a normal
- lunch break time, whereas, as the newest student, you should have your lunch
break either very, very early or very, very late. And people not understanding
that it‘s actually, you know, a real issue. People wanting to have... now,
you know, there are a lot of things like people wanting to have breakfast
meetings, people wanting to have lunchtime meetings. I was invited to a lunchtime
meeting where there wasn‘t food provided. And these things... you know, okay,
now I‘m on this new diet I don‘t need to, but, you know, a) I think it‘s not
just diabetics who need to eat at certain times, but these kind of... You
know, food is increasingly an issue for everybody in our society, and for
diabetics, you can be made to feel that you‘re just some kind of greedy person.
I know I was witnessed eating something the other day in the town, and I was
hypoing, and I just went into the shop and just bought the first thing, because
I didn‘t have any glucose. And I felt terrible eating it in public, because,
you know, you‘re not suppose to be seen to be eating these bad, unhealthy
things, but, you know. And people don‘t... there‘s just a lack of... there‘s
just sort of an ignorance around.
And what about discrimination
surrounding visual impairment?
Well, I think people don‘t understand
that diabetes can cause other issues. I mean, they might have some kind of
vague idea that it can cause blindness, but most people seem to think that
you‘re born blind. And I think, you know, there is a huge ignorance around
people with an obvious impairment. People assume that you‘re not working,
people assume you don‘t have children because of your impairment, and that
it‘s a good thing, people assume that you‘re stupid. As a visually impaired
person, people seem to think I‘m deaf as well, because quite often they shout
at me. And yeah, just general level of, again, not understanding the kind
of barriers that you encounter on a daily basis, that can be through other
people‘s ignorance, through sort of real physical barriers - like steps with
no clear sort of notice that they‘re coming, road works, where you suddenly
find yourself... the pavement stops and you have to go into roads - and, you
know, transport is a huge issue.
How do you think your life would have been different if you hadn‘t had diabetes?
Diabetes is kind of central to
who I am, because I don‘t remember not being diabetic. To talk about not
being diabetic would be to say to somebody "how do you think it would
be if you weren‘t white, or if you were black, or if you were a man or a woman?".
And, you know, it‘s part of who I am.
What keeps you going?
Well, I think... you know, as
I‘ve been trying to sort of say, I do have a political understanding of my
position, and I think that‘s very helpful for anybody who has any kind of
impairment. I don‘t think... I don‘t blame myself for my impairment; I blame
society for the barriers that I have to overcome, because people don‘t treat
you equally. But, on the other hand, you know, this is my life, and, you
know, it‘s a lot easier than some people‘s lives, and, you know, what keeps
Can you spell out a bit more
what you mean by a political understanding?
Well, I suppose I mean that,
you know, we all use words like disability and impairment, but historically,
they have a very different meaning in different times and in different societies.
Our understanding of disability, from Ancient Greeks right through to the
Middle Ages, was very much from a religious concept, and that disability was
something that happened to you if you were evil; if, you know, you were the
spawn of the devil or something. And then, from the Industrial Revolution
times, it was very much a medical understanding, where the body was the focus
of attention, because there were huge, huge changes in medical understandings
of disability. For various reasons, disabled people became separate from
non-disabled people. People with epilepsy were put in special homes. People
- you know, cripples, etcetera, etcetera - we became very separate from non-disabled
people. And it was really only in the 1960s that disabled people starting
arguing that we should be changing society, rather than changing disabled
people and concentrating on some kind of quick fix cure. You know, if you
look at the history of the human race, people have altered and changed their
environments to suit themselves, you know, since time began. You know, we
don‘t walk through rivers - we build bridges, etcetera; we can‘t see in the
dark - we put street lights up. But when it comes to disabled people, we‘re
constantly trying to change them to fit into society. And a social and political
understanding of disability would mean that, instead of trying to change the
people all the time, we would be trying to change the society, so that they
didn‘t have to feel different, and that they were accepted for who they are,
rather than for what they can‘t do. So, for myself, as a woman with a visual
impairment, it‘s about making sure that everything is in an accessible format
for me. That hospitals... the local eye hospital, I stopped going to it,
because it was so badly signed, you got lost every time you went there. You
know, they could have done a lot of things for people with visual impairment,
to make it easier to move around the hospital. This isn‘t my fault, because
I‘ve got a visual impairment. It‘s the hospital fault for not addressing
their access policies.
Is there anything else you‘d like to say about your experience of diabetes?
I think one of the things I learnt
from doing the course was that I have always thought that diabetes is no big
deal. Okay, I lost my sight through it, but, you know, it‘s like it hasn‘t
had a huge impact on my life in some way. But then you start thinking about
the amount of time I spend every single day thinking about it: thinking about,
you know, what my blood sugars are, how they‘re going to be affected by doing
certain things - if I go swimming, will, you know, where will I have lunch?
Will my sugars go too low? Have I got glucose on me? - how to work out the
certain amount of carbohydrate if we go out for a meal. You know, you do
spend an awful lot of your time thinking about it, and it‘s so much part of
you, though, that you‘re not even aware. Until I did the course, I wasn‘t
really aware of how much time I actually spent thinking about my diabetes,
because I don‘t remember not think... you know, it‘s just part of my life.
Have you got any message to someone
newly diagnosed with diabetes?
Just try and find out about it
as much as you can, so that it fits into the way that you want to live your
life. It doesn‘t have to be the end of the world, but you do need to be able
to manage it so that it doesn‘t take over your life.
And can you talk a bit more about
the emotional effects of having diabetes?
Well, I think there‘s two ways
of looking at that, really. I think, as a child, it was... I think I was
always seen - and, in fact, I was talking to my sister about this the other
day - I was always seen as the difficult one, even though, when you look at
it objectively, I actually did everything pretty normally and straightforwardly,
as a child, compared to some of my siblings. But I was always the sort of
difficult one - the one, as I said before, you know, not wanting to do injections
and things. And I don‘t think I have a very good… a healthy attitude towards
food, in terms of, I eat what‘s on my plate, I don‘t think "am I still
hungry?". I was always very much… everything was weighed out, and I
had to eat everything that was on my plate. And I still have this kind of
like, whatever size portion‘s put in front of me, I eat it all! And I think
that‘s from, you know, years of having done this. And then, as a teenager,
being overweight - I think for teenagers, particularly, there‘s issues there.
But, I think the most sort of emotional stuff for me is how you don‘t know
whether you‘re actually feeling in a bad temper and uptight about something,
or whether or not it‘s because your sugars are high. Because, when your sugars
are high - or for me anyway - I feel very irritable and uptight, and feel
like screaming, quite often. And so, you‘re not really sure whether it‘s...
you know, how you make that distinction between whether it‘s you, because
it‘s still you with your sugars high, or whether it‘s an actual sort of physiological
reason that‘s making you feel like this. And I think that‘s very difficult.
And I think for partners of people with diabetes, that can be very difficult
as well. I know, if my partner says to me "oh, are your sugars high?"
after I‘ve just snapped, then I just snap even more. And I think it can make
you, you know, a pretty difficult person to live with, because, as I say -
or low sugars can make you feel irritable as well - so, you‘re not always
sure why you react in a... you know, is it for an emotional reason or, you
know, is there a sort of a physiological reason behind it?
And do you talk to doctors and nurses about the emotional effects?
On the course that I did, we
did slightly touch on the emotional effects, but it was really about the difficulties,
as I said before, about doing things that you‘d all your life not been able
to do. But generally speaking, certainly throughout my childhood and up until
my sight problems, really, I would say that the majority of the times I had
anything to do with anyone from the medical profession, it was lying to them,
because even when you were an adult, you‘re treated... if your sugars... I
mean, even last year, when I was having an operation that was nothing to do
with my diabetes. I was in the hospital, and the anaesthetist came to see
me, and there was a packet of Dextro glucose on my bedside table, because
my experience is that if you‘re in a general medical ward, they‘ll know nothing
about - no, sorry, I was in an orthopaedic ward - and they would know nothing
about diabetes, as they didn‘t. So, I took glucose in in case I hypo‘d.
Anyway, this anaesthetist came in and said to me that he hoped I wasn‘t eating
glucose, because, as a diabetic, I shouldn‘t eat it. Now, this is like, you
know, after forty odd years of being diabetic, and they still treat you like
you‘re a child. And, you know, if your sugars go high in hospital when you‘re
very stressed, they say "have you been eating Mars bars?" or whatever.
And so, that kind of... you lie to the medical profession. You lie because
you don‘t want to be told off, you lie because you‘ve been forced to act like
a child, because they‘re treating you like a child. And I just think the
majority of people with diabetes, I would say, lie to the medical profession,
because they‘re not being honest with you, they‘re not treating you like an
adult, if anything goes wrong, you‘re the first one to be blamed - must be
something that you are doing that is wrong. So, you know, it kind of fosters
this distrust, if you like, between the medical profession and diabetics.