Living with the stigma of diabetes

Type 1 and LADA
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I don’t know I ever felt stigmatized, but if one is social and young, I can see how this might be a problem…

Article below:

Living with the stigma of diabetes

Montreal, June 12, 2018 - Michael Wright was your average high school student, juggling the responsibilities of school and friends while taking the first steps towards finding his first real job. Being diagnosed, suddenly, with type 1 diabetes was a shock. Suddenly, Michael found himself struggling with the sudden requirements that accompany treatment, from the intense monitoring of dietary habits to administering insulin - either through injections or via a cell phone-sized pump attached to the body. And, in addition to the daily struggle of staying on top of his new diagnosis, he felt stigmatized.

A team at the Research Institute of the McGill University Health Centre (RI-MUHC) report that teen and young adult (aged 14-24 years) type 1 diabetes sufferers often experience stigma, which leads them to neglect treatment and tread dangerously close to suffering medical emergencies. Michael was one of two patient partners engaged to participate in a study that is the first of its to estimate the stigma prevalence in this age group related to type 1 diabetes, which can lead to elevated HbA1c levels and severe hypoglycemia. Their findings are published in The Journal of Medical Internet Research.

“A lot of things that tend to be automatic in our bodies suddenly have to be managed, which is super stressful. Then you superimpose on this the fact that you are a young person worrying about your career, your romantic life, education, autonomy from your parents - all this stuff happening and then you get hit with this and it ticks you off,” says study senior author Dr. Kaberi Dasgupta, who is a clinician-scientist in the Metabolic Disorders and Complications Program at the RI-MUHC and internal medicine specialist at the MUHC. “They are always kind of dancing with death - constantly treading that fine line.”

Type 1 diabetes affects under 10 per cent of diabetes sufferers worldwide but accounts for 95 per cent of diabetes that starts in childhood and adolescence. It requires intensive and complex round-the-clock self-care and when vigilance dips, the risk of medical emergency is real–be it loss of consciousness and death related to low sugars or dehydration and medical emergencies related to very high blood sugars. In the longer term, blindness, renal injuries, amputation, heart disease, and strokes are all a real possibility in the absence of careful management. These constant demands mean youth with type 1 diabetes can feel stressed out while struggling with their predicament, burdened by issues with self-esteem, body image, social role definition, and peer-related issues. Two-thirds of study participants experienced stigma, with a higher proportion rate found among females compared to males.

“When I was diagnosed at 16, my friends were supportive but they could not understand - it was a shock to them as much as it was a shock to me,” Michael remembers. “I didn’t expect them to understand and I didn’t feel like I belonged as much anymore. And that is a common theme we discovered: a lack of social support leaving people feeling alone.”

Three hundred and eighty participants between the ages of 14 to 24 were specifically recruited via social media with the help of Diabetes Canada and diabetes clinics and organizations across the country. This has led to the creation of a Virtual Patient Network (VPN) where this type 1 age group can communicate with one another to offer a variety of health and practical tips. This ranges from managing blood sugar levels in relation to physical activity to the must-have items for a weekend camping excursion.

“The patient partners thought of the questions and helped us develop and formulate our questionnaire, and they helped interpret and analyze the data,” says Dr. Dasgupta, whose team is at the Centre for Outcomes of Evaluative Research (CORE) of the Research Institute. “The creation of the peer-to-peer network has provided those coping with stigma a platform toward the research agenda of helping to reduce stigma and live with type 1 diabetes.”

“Canada is facing a diabetes epidemic - one in three Canadians lives with diabetes or pre-diabetes and young people in their twenties have a 50 per cent chance of developing the disease in their lifetime,” said Dr. Jan Hux, president of Diabetes Canada.

“Despite the fact that type 1 diabetes is not the fault of the person affected by it - is not related to any behaviour patterns or choices - young people diagnosed with it experience a distressing level of stigma. Research and programs that raise public awareness and support around type 1 diabetes and foster resiliency in those affected by it are urgently needed. Diabetes Canada is pleased to have supported this first of its kind research in Canada.”

About the Study The study ‘Stigma and Its Association with Glycemic Control and Hypoglycemia in Adolescents and Young Adults with Type 1 Diabetes: Cross-Sectional Study’ was co-authored by AnneSophie Brazeau, PhD, RD; Meranda Nakhla, MD, FRCPC; Michael Wright, BSc (c); Mélanie Henderson, MD, PHD, FRCPC; Constadina Panagiotopoulos, MD, FRCPC; Danièle Pacaud, MD, FRCPC; Patricia Kearns, BFA; Elham Rahme, PhD; Deborah Da Costa, PhD; and Kaberi Dasgupta, MSc, MD, FRCPC. DOI: 10.2196/jmir.9432.

Link to the study: https://www.jmir.org/2018/4/e151/

This study was funded by Diabetes Canada. The is jointly funded by Diabetes Canada and the Canadian Institutes of Health Research.

About the Research Institute of the MUHC

The Research Institute of the McGill University Health Centre (RI-MUHC) is a world-renowned biomedical and healthcare research centre. The Institute, which is affiliated with the Faculty of Medicine of McGill University, is the research arm of the McGill University Health Centre (MUHC) - an academic health centre located in Montreal, Canada, that has a mandate to focus on complex care within its community. The RI-MUHC supports over 420 researchers and close to 1,200 research trainees devoted to a broad spectrum of fundamental, clinical and health outcomes research at the Glen and the Montreal General Hospital sites of the MUHC. Its research facilities offer a dynamic multidisciplinary environment that fosters collaboration and leverages discovery aimed at improving the health of individual patients across their lifespan. The RI-MUHC is supported in part by the Fonds de recherche du Québec - Santé (FRQS). http://www.rimuhc.ca. To arrange media interviews with Dr. Dasgupta, Mr. Wright, or a local type 1 diabetes patient from your part of Canada, please contact:

Paul Logothetis
Communications Officer
McGill University Health Centre
514-210-6376
Paul.Logothetis@muhc.mcgill.ca

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This may be harsh, but feeling stigmatized is self induced.

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That one stopped me in my tracks. Is that accurate? And is he talking about T1 or (I have to assume, since it’s not stated) T2? Very confusing.

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I think it is a little harsh if we’re talking about kids and adolescents. That kind of inner security is obviously of great value, but much harder to achieve at an age when you and your peers are all still developing a sense of identity at all, and social pressures to conform to the group norm are enormous. In adolescents, it’s one of the biggest reasons kids don’t adhere to their insulin regimens–they want to be normal, and having to deal with a pump or injections and all the rest of it present big obstacles to that. Parents have to work hard enough to help instill a sense of self-security in any kid this age, and it’s twice as hard when there’s a chronic disease with visible effects and medical gear involved.

For my part, I was dx’d at age 28, so I never had to go through it. To me it’s this aspect that makes “juvenile onset” almost a different disease, even if the biophysical causation is the same.

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I have to disagree with the comment that the sense of stigma in a young person with diabetes is self-induced, since there obviously would have been no sense of stigma whatsoever had it not been for the onset of type 1 diabetes, which is in no way ‘self-induced’ by the patient.

This reminds me of the peculiarity of the Stoic philosophy, one of whose advocates, Epictetus, said that “it is not what happens to you that makes you sad, but only how you choose to feel about what happens that does.” In a sense this is true, since with enough will, someone could overcome superhuman inducements to react unhappily, as Epictetus himself did when his master broke his arm and Epictetus did not cry out, but that still does not mean that the inducements are not themselves often overpowering. In the case of a diagnosis of type 1 diabetes at an age when social acceptance is a major theme, 99% of the cause of the sense of stigma is due to the fact of the disease and the response of the community, and 1% to the inability of the teenager to summon a superhuman ability to transcend the situation.

I was diagnosed at 14, and throughout my life I have experimented with revealing my condition in some communities and hiding it in others, and I can say emphatically that for me it has always been better to keep it a secret, if only to keep the people around me from turning vicious, as they often do if they perceive those around them have a weakness they can use against them. When I went through the week of introductory lectures about the disease at the Joslin Clinic in 1966, one of the professors of medicine instructing us said, “Don’t underestimate the value of the one advantage of diabetes: it is invisible.” Now, with pumps, that one advantage has been taken away, at least for those who use them, as I don’t.

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Pumps can be reasonably invisible. Omnipods can be completely unseen, for example. Other pumps today are not so big or intrusive that people immediately know what they are. I’ve been asked why I wear a ‘pager’ numerous times. It’s also been confused for some kind of “ancient” cellphone. I’ve also been asked if the chemotherapy drip from the pump was helping my cancer (which I do NOT have!)… People see what they want to see.

But I agree, the stigmatization comes from the disease and people’s reactions to it. I was diagnosed on the other end of the spectrum - at 50. Even doctors ask me things like “how was your T1D not diagnosed earlier?” (implying that it HAD to have started when I was a juvenile).

[EDIT - Got distracted and posted an unfinished post] What I have noticed is that the fact that I was older makes people assume that my diabetes was lifestyle-related. I’ll get “understanding nods” (as they look me up and down…) to indicate that ‘can tell’ why I have diabetes. I’ll be asked whether I’ve learned my lesson and eat more properly now… The whole ‘Well, it was obviously your fault’ thing goes on. Different type of stigma to what teens/young adults feel, but I can tell you I feel it too!

[NOTE: I strongly believe that NO ONE can be blamed for ‘causing’ their diabetes – Even poor lifestyle choices are usually not choices at all, but extensions of the environment in which the person lived – and even IF they were choices, there are a lot of other factors that play into this thing - and many are not yet known!]

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I was diagnosed T1D at the age of 30. Reading this study makes me grateful that I did not become T1D until after my teenage and young adult years. I can’t say that I’ve ever felt stigmatized but I did have one career roadblock when I wanted to work at a line station as an avionics mechanic for a commercial airline. I understood the legal reasoning and just accepted it even though I was disappointed.

I understand that airlines and other “common carriers,” such as bus-lines and railroad operators owed their passenger an additional legal duty to insure safety. That extra legal caution kept me from working a position that I was otherwise qualified for. I got it but didn’t like it.

I’ve never hid my diabetes from social contacts or work colleagues. I tested freely and openly. This provide me with many opportunities to talk with interested people about diabetes. If anything, the baseless public sentiment toward stigma gave me extra incentive to show people that diabetes stigma was not going to slow me down, either personally or professionally.

Once I teamed up with a hypo-alert service dog, any anonymity forever ceased. If you can’t hide it, flaunt it!

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My daughter was dxd 2 weeks after her 11th birthday. She absolutely felt stigmatized, by her peers & also by her teachers & school staff. It was anything but self-induced.

Some examples:

The 5th grade teacher who handed out candy as a reward, but told my daughter she couldn’t have any since she was diabetic, & everyone knows diabetics can’t have sugar.

The school nurse who removed items from her lunch because she deemed them “inappropriate for a diabetic.” This was not only damaging to my daughter emotionally, but a stupid move considering her meals were planned around her regimen that included NPH.

The teacher who made my 11 yr old lug a full-sized backpack loaded with enough water & snacks for a 2 day trip on a short 2 hour hike because exercise is good for diabetics & she needed those supplies. She was 5 minutes from the school, & her kit had everything she needed & fit nicely in the pocket of her cargo shorts.

The classmates who refused to sit near her because they might catch diabetes from her.

The classmates who made fun of & laughed at her as she sat on the locker room floor in a hypo induced stupor.

Or how about the pharmacist who felt the need to tell me we’d have no need for glucagon if I would just learn to dose insulin…while my daughter was standing there.

My daughter’s first insulin pump was the Animas Ping. The main selling point for her: she could bolus from the remote & keep her pump hidden.

All of this while trying to learn how to navigate the world while living with T1, & dealing with the typical adolescent insecurities.

Frankly, I’m amazed that she has adapted as well as she has. She’s become a strong self-advocate, & at 20, she’s a force to be reckoned with. She doesn’t hesitate to speak out when she hears uneducated comments about diabetes, & the “type” doesn’t matter. I feel for the kids who don’t fare as well. I’m sure there are many.

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I think he’s talking about any/all types combined. Yes, the majority will be T2.

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My story pretty much mirrors @tiaE daughter, I was completely ostracized in school by children who believed they could catch diabetes no matter how many times I explained to them that it wasn’t so. I wasn’t allowed to go on field trips for years because no teacher would take responsibility for me away from the school nurse. It wasn’t until my mom suggested coming along on trips that the school finally relented and started letting me come.

I too am a strong self advocate and I frequently help others too. The point I would like to make is that this stigma is very real and if you don’t have a good enough support system around you then it can be crushing.

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Since I was dealing with type 1 as a teenager in the 1960s, there were both advantages and disadvantages compared to now. Since management was much less intensive than now, and consisted just of one combined dose of NPH and ‘Clear’ or ‘Fast-Acting’ in the morning with breakfast, self-styled ‘experts’ surrounding you had no hook into your life to justify their interference. Because the only way to test glucose was via urine sugar testing, which measured the amount of fluid you had drunk as much as the amount of sugar, everyone realized the test was next to meaningless, so there was not much of an opening for interference by outsiders there either.

However, there were more myths, such as that you must have gotten diabetes because you had eaten too much sugar, you were going to be blind or dead by the time you reached 30, and the disease was contagious, so swarms of students would move away from you in the hallways of the school to keep from catching it. After a year with diabetes in a public school where everyone knew about the diagnosis, I transferred to a private school where the staff kept it a secret, and things were much better. As a result, there was simply no mention of diabetes during all my high school years, and I could pass as normal.

Now whenever doctors find out I have diabetes they always say something like ‘you must have weighed a lot more before,’ thinking that, given my age, I must be a type 2. When I tell them I’m a type 1 and that I was diagnosed at 14, they fall silent and stare in astonishment.

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Pumps can also help hide diabetes though. When I am using my pump I often bolus in my pocket right in front of others without them knowing what I’m doing. For me that is actually one of the biggest advantages of them.

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I’m going to go out on a limb and suggest that if a child or teen hides their diabetes, they will likely do so as an adult as well. And hiding causes all kinds of problems and worries and fears. Just like hiding being gay. Being out of the closet makes life far, far easier.

If a teacher or a relation or whoever has some misconceptions, perhaps a short conversation with them to educate them will do much more good than hiding one’s diabetes to avoid such situations. Otherwise the teacher or relation or whoever remains ignorant and inflicts their misconceptions on other diabetics.

I have always been totally open about my diabetes; I have never made any attempt to hide it. I don’t see the point. I can also say I have never experienced any viciousness or stigma about being diabetic. Perhaps the two go hand in hand. Or perhaps I’ve just been extraordinarily lucky.

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At 20, I consider my daughter an adult. She stopped hiding her diabetes years ago. Of course, she could be an exception.

As for conversations with teachers, I would guess you’ve never been the parent of a child with T1 in a public school. Trying to advocate & educate was a waste of time of effort in our case. There’s a reason we have federal & state laws to protect these kids. Sadly, real enforcement is lacking. The only thing some of these institutions understand is that when a parent brings in an attorney, that parent is serious about protecting their child’s rights.

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I disagree. I was diagnosed in 1962 at 10. Had glass syringes that required boiling to sterilize. No pens, no meters. Through high school, no Diet Coke or unsweetened tea. I worked SO hard to fit in. Try going out today without tools you depend on daily to help.

NOT SELF INDUCED. It was real and very painful. Banned from activities you want to participate in? Friends aware that you were, affected and different?

It is very harsh. Think outside your box, please

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I’m sorry you and your daughter have had such negative experiences. My mother did a presentation every year in my class at my elementary school after I was diagnosed. My mom would describe how diabetes affects my life and how it’s not contagious.

I didn’t talk about diabetes much with my friends, but all of them knew I was diabetic. I wonder if different communities are more tolerant than others. I wonder what the demographics are of those that are the least tolerant.

I ran into other limitations in life imposed upon me by people who thought I should live my life a certain way. Overall though, I’d say diabetes was not my biggest problem. If anything, I think diabetes may have made me strong enough to overcome some of the other challenges and limitations in my life. The main concerns I have about being diabetic revolve around ensuring I have access to healthcare/insurance and managing the stress of diabetes day-to-day.

That being said, I don’t tell everyone I’m diabetic. I prefer people get to know me before I tell them. Diabetes is just one part of my life… no need for people to know right away.

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@beacher I have never hidden my diabetes and always used every opportunity to educate both adults and children around me but I was still treat shamefully by those who should have known better including Drs.

I grew up in a small town, Caucasian and Hispanic, poorly educated but even those who were well educated didn’t know anything about type 1 and I even had adults tell me I got diabetes from too much sugar. That being said when I lived in a big city for a while children still treated me the same. Fear of the unknown plus fear of possibly getting a clearly scary disease makes for unreasonable people.

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I wonder if the title of this thread needs to be changed (something like “Living with People’s Ignorance about Diabetes”?), because for the most part what’s being talked about is people’s outdated ideas about diabetes, or people being misinformed or uninformed. That’s not stigma.

I think most people have vague notions about diabetes they picked up somewhere along the way, and if diabetes isn’t in their immediate circle, why should we expect them to have kept up with major changes in treatment and diet? It’s up to us to educate them, since they have no reason to educate themselves.

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One good thing that comes from being super open about illness - people are super open with me about their illnesses. We form a secret gang. There are negatives about disclosing, but there are also positives. People ask me questions. I ask them questions. We stick up for one another. We learn how people from a variety of illnesses have shared experience. We learn what is unique to each of us. We have a sort of secret church, to which we all belong.

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We challenge one another to be better. There are so, so many of us, especially if we only slightly expand our definition of what it means to be ‘sick.’ I love the sick. They are really the best among us - that’s where you find the truly gifted, the resilient, the unstoppable, the firestarters, the undefeated.

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I think stigma is the proper term, since it is perfectly consistent with the concept of stigma that it be imposed by other people, whether accurately or inaccurately.

The problem with the theory that you should try to educate people about your disease is that others assume that anything positive you may say about it is just some fabrication or lame rationalization to make your situation seem less hopeless than they ‘know’ it to be, so they look at you with pity and contempt while you’re explaining.

But after 52 years of the disease I accept that it is stigmatizing, since it makes some employers not hire you (but they’ll never admit why, so that they don’t get a discrimination suit), it causes many people to shun you, it burdens you with a condition that makes you behave, on occasion, involuntarily like a drunk or a drug addict, both of which conditions are shameful, and for most people, appearance is the reality. People are reluctant to marry you, because they assume they will be burdened with your premature death, with constantly having to care for hypoglycemic emergencies, with the disabilities of diabetes, from dialysis to blindness, or, if you are male, with impotence. So you have to face it, as a diabetic you will be shunned by many people.

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