Youth with Type 1 di­a­betes of­ten feel stigma

Man­ag­ing con­di­tion poses a ma­jor is­sue for many young peo­ple


TORONTO — At 16, Michael Wright was shocked to learn he had de­vel­oped Type 1 di­a­betes. Not only did he have to learn how to man­age the con­di­tion with fre­quent blood­sugar checks and in­sulin in­jec­tions, he quickly be­came aware of the stigma as­so­ci­ated with hav­ing a chronic disease that set him apart from most of his peers.

“I didn’t want to show it in front of my friends, I didn’t want to seem un­cool,” said the Montreal univer­sity stu­dent, now 22. “I was kind of em­bar­rassed to do the in­jec­tions in front of peo­ple be­cause it’s vis­ual. You can’t re­ally be sub­tle about it.

“Do­ing it in the cafe­te­ria with ev­ery­one around me was kind of un­set­tling. I had to in­ject any time I ate any­thing, whether a snack or a meal — any­thing with car­bo­hy­drates, I had to count and give in­jec­tions ac­cord­ingly.”

In­tense phys­i­cal ac­tiv­ity can also play havoc with blood- sugar lev­els. Wright, who played hockey and soccer, found it up­set­ting when he would have to bench him­self pe­ri­od­i­cally dur­ing a game to sta­bi­lize his glu­cose. “I wanted to play,” he ad­mit­ted.

Type 1 di­a­betes is an au­toim­mune disease that at­tacks the pan­creas, leav­ing crit­i­cal cells in the or­gan un­able to se­crete in­sulin that nat­u­rally reg­u­lates blood glu­cose lev­els re­lated to food in­take.

The disease dif­fers from Type 2, which oc­curs when the body be­comes re­sis­tant to in­sulin or when the pan­creas stops pro­duc­ing enough of the hor­mone. Ge­net­ics and en­vi­ron­men­tal fac­tors, such as ex­cess weight and in­ac­tiv­ity, are thought to be con­tribut­ing fac­tors.

While Type 1 af­fects only 10 per cent of all di­a­betes pa­tients, more than 90 per cent are un­der age 25.

For teens and young adults with Type 1 di­a­betes, stigma sur­round­ing the dif­fi­cult- to- man­age con­di­tion can be a ma­jor is­sue at a time when they are faced with the stresses of go­ing to school, fig­ur­ing out their ca­reer path or start­ing jobs, as well as em­bark­ing on ro­man­tic re­la­tion­ships, said Dr. Kaberi Dasgupta of the Re­search In­sti­tute of the McGill Univer­sity Health Cen­tre ( MUHC).

In a study pub­lished in the Jour­nal of Med­i­cal in­ter­net Re­search, Dasgupta and col­leagues found that a sense of stigma can lead many young peo­ple to be ne­glect­ful of their di­a­betes health, putting them at po­ten­tial risk of both short- and longterm com­pli­ca­tions.

The study in­volved 380 Cana­di­ans aged 14 to 24, who re­sponded to a web- based ques­tion­naire about their ex­pe­ri­ences with di­a­betes­re­lated stigma and the ef­fects on man­age­ment of their disease. Par­tic­i­pants were largely re­cruited through so­cial me­dia plat­forms, and their in­volve­ment in­cluded pro­vid­ing a blood sam­ple that was checked for glu­cose lev­els.

Dasgupta said 65 per cent of re­spon­dents re­ported ex­pe­ri­enc­ing some form of stigma re­lated to hav­ing Type 1 di­a­betes.

“The peo­ple who did ex­pe­ri­ence a feel­ing of stigma were twice as likely to have ei­ther a ... high level of blood sugar or an episode of se­vere hy­po­glycemia in the last year, mean­ing that they had a blood sugar level low enough that they re­quired some­one to come to their as­sis­tance,” she said from Montreal.

A bout of hy­po­glycemia — caused by hav­ing too much in­sulin in the body — re­sults in not enough glu­cose get­ting to the brain, caus­ing con­fu­sion, slurred speech and po­ten­tially loss of con­scious­ness.

“You could even die,” said Dasgupta, not­ing that the op­po­site dan­ger is re­peat­edly hav­ing too lit­tle in­sulin and high blood sugar, which can dam­age blood ves­sels and lead to blind­ness, kid­ney fail­ure and car­dio­vas­cu­lar disease over time.

“Nav­i­gat­ing that space be­tween highs and lows can be very chal­leng­ing.”

Wright said a com­mon theme heard from par­tic­i­pants was feel­ing sin­gled out in pub­lic when they had to in­ject in­sulin, adding that the as­sump­tion was that the per­son was shoot­ing up an il­licit drug.

“It’s one of the is­sues that the peo­ple in this study brought up, like strangers would be com­ing up to them say­ing not to do this around their chil­dren, or ‘ Why are you do­ing this in a pub­lic place?’ ”

As a re­sult of his par­tic­i­pa­tion in the study, the re­searchers helped put to­gether a vir­tual pri­vate net­work ( VPN), a Face­book com­mu­nity where mem­bers can sup­port each other, re­duc­ing the sense of iso­la­tion that stigma sur­round­ing their disease can cause.


Dr. Kaberi Dasgupta, right, and study par­tic­i­pant and co- au­thor Michael Wright, chat about blood sugar test­ing at the MUHC su­per­hos­pi­tal in Montreal.

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