People with Diabetes
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After diagnosis

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After diagnosis Clare (right) with sister, before diagnosis
 
 
Interview 45 Clare

Person with diabetes
Born 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`.

Please note that Overview relates to date of recording 24 February 2005

 Short samples

1 Her mother was a district nurse, but both she and the elderly village doctor had only encountered Type 2 diabetes in older patients. Their belief that Clare could be treated with diet alone proved disastrous for her health [ 50 secs ]

2 Clare had always assumed that nurses knew no more about diabetes than she did – until 2003, when she went on a course run by a diabetic specialist nurse and a dietician. It was called “Insight”, and it changed her life [ 55 secs ]

 
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01 Cornish hamlet - father teacher, mother district nurse. Mother & GP only knew type 2s, so treated me with diet only & threats for 4/5 years – always ill & thirsty, until doctor visiting said I needed specialist. 90 miles to Plymouth hospital – insulin.
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02 Specialist blamed GP. Not admitted to hospital - no explanations. Diet strict – portions - but more liberal than previous starvation.
Diabetes caused strife with parents, grammar school, siblings. Saw child psychiatrist.
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03 No diabetic education. Not taught injecting - took ½ hour. – painful - once daily, then twice. Refused urine testing - disliked being diabetic – rebuked by hospital. Avoided diabetics.
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04 Secondary school - different food – argued with cooks. Used diabetes as excuse. Child psychologist, until 15.
Took Largactil. Teens - smoking, drinking, drugs.
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05 Teens – ignored diabetes, ate anything, injected without testing. As child – regularly unconscious. Teens – sugars high, hypos rare. Often in hospital, various reasons, before & during college in London. After college, abroad 12 years (slip – later corrected to 7 years)…
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06 …Italy, Greece, no medical supervision, returned to England for insulin. Aged 22 to 35 - travelled, taught English, socialised. Avoided LSD – unlike another diabetic.
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07 Ate & injected fixed times. Never tested. 1982, line in eye – visited doctor with Greek boyfriend – going blind. To & fro between Moorfields Eye Hospital & Greece for 2 years. Laser treatment. Shock when told registered blind – no warning, no help.
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08 Everything seen as my fault. No positive experience of medics. Not seen as person. No help after going blind.
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09 Parted from Greek partner. Began psychology degree. Changed to sociology - political understanding of disability helped. Took ages to get help needed. Now use computer & magnifying glass.
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10 Started 2nd degree, 1986, then MA, then PhD – finished 1996. During MA, realised impairment equality issue, not medical – helped.
Diabetes badly controlled in Moorfields. Told nurse would have to do injections. Still no syringes specifically for visually impaired.
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11 Good control since lost sight, 1984. Test 4/5 times daily, 6 injections. At university, influenced by first consultant who explained.
Worked in university.
Since 2000, manager of organisation for disabled.
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12 From 2000, no relationship with consultant - moved hospital – hospital transport humiliating - moved back to other hospital – now see chief consultant - good.
Thought knew more than specialist nurse until Insight course, 2003, run by nurse & dietician – now best control ever. On Lantus. Abandoned exchanges…
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13 …previously adjusted food to insulin: now insulin to food. Could eat sweet things. Ratio of carbohydrate to insulin. Weigh, because can`t see. Partner does maths.
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14 Weekly sessions worked well. Knew stress affected diabetes - medics disagreed – course taught effects of stress & alcohol. Assumptions overturned – don`t worry when miss lunch!
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15 Knew small stress lowers sugar levels, large stress raises them - before Insight course, medics uninterested – different specialists see different conditions – Insight was holistic.
Since course, saw heart specialist – first explanation of diabetic connection.
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16 Now find nurse helpful. Complications require holistic treatment - like nurse – she`s exceptional – other nurses less knowledgeable.
Typical day at home different from…
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17 …typical day travelling.
Improvements – monitoring equipment, monitoring software, disposable syringes free, finer needles, pens discreet.
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18 Changes – Only some medics have changed. I demand equal treatment. Formerly no specialist nurses. Still long waits.
Recent comment that diabetic worker should be shadowed.
Type 2 better known – people assume all diabetes lifestyle-related.
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19 People ignorant re diabetes & visual impairment - don`t make provision.
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20 Diabetes central to me. Political understanding helps - from 1960s, disabled argued society should change.
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21 Course highlighted diabetes takes time.
Message – research diabetes, don`t let it take over.
Emotional effects – difficult child; eating problems; irritability - hard for partner.
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22 Course mentioned emotional effects.
Diabetics tell lies to medics.
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Transcript
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