Young peo­ple with di­a­betes con­front stigma

Those with Type 1 form of dis­ease can even ne­glect treat­ment, study finds

The Welland Tribune - - Canada & World - SH­ERYL UBELACKER

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 blood-sugar 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, who is 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,” Wright ad­mit­ted. “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.”

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 di­a­betes, 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-toman­age 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 McGill Univer­sity Health Cen­tre.

In a study pub­lished Tues­day 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 long-term com­pli­ca­tions.

The study in­volved 380 Cana­di­ans aged 14 to 24, who re­sponded to a web-based ques­tion­naire about their ex­pe­ri­ences with di­a­betes-re­lated 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.

“In fact, peo­ple with stigma were three times as likely to have dan­ger­ous low blood sugar lev­els in the past year.”

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,” Das­gupta said, 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.”

Beyond the dif­fi­culty of man­ag­ing the life­long dis­ease, con­tend­ing with peo­ple’s at­ti­tudes can also be a chal­lenge, said Sarah Baker, 24, a study par­tic­i­pant who was di­ag­nosed with the dis­ease at age 12.

“One of the big­gest things is that (when) peo­ple hear di­a­betes, they au­to­mat­i­cally think Type 2, so there have been com­ments made like ‘Oh, you must have had a prob­lem with sugar’ or ‘Oh wow, you’re pretty thin for hav­ing di­a­betes,’” said the Win­nipeg so­cial worker.

“Nei­ther of those things have any­thing to do with hav­ing Type 1, so there’s a lot of that mis­con­cep­tion that re­sults in peo­ple’s un­in­formed com­ments.”

Baker now uses an in­sulin pump and a con­tin­u­ous blood­test­ing de­vice that sends read­ings to her smart­phone.

Wright, who was one of two peo­ple with Type 1 di­a­betes who helped re­searchers de­sign the study and an­a­lyze re­sults, said a com­mon theme heard from par­tic­i­pants was feel­ing sin­gled out in pub­lic when they had to in­ject in­sulin.

“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 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.

“It’s helped a lot of peo­ple so far,” Wright said. “To have a place where we can in­ter­act eas­ily with each other is re­ally ben­e­fi­cial.”


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

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