A Fragmented Community

This post is likely going to present some unpopular opinions.

Or invite them.

This post may make people feel uncomfortable but it may also make people feel validated.

This post just might be a garbled mess, which is unfortunate for you the reader (and possibly me the author) but ultimately it is representative of how I sometimes see the diabetes community…

What I do hope is that it stimulates and continues the dialogue around the topic of inclusivity in the diabetes community.

My first foray into the diabetes online community was my first impression of the diabetes community.

My late teen diagnosis back in the late nineties found me too old for camps and too young to relate to geriatric type 2s in all my diabetes classes immediately post-diagnosis.

This is not a slight on those living with T2D or of a certain age. In those classes, I was the youngest person by fifty years and the ONLY Type 1.

Alas, that first impression came over a decade after diagnosis and it impacted me. Negatively. It found me recoil back into solitude. And left me without peer support once again.

Several years later, I tried again. Found a friend. Found more friends. And have even mustered the courage to raise my voice in the community.

But the community is (still) broken.

In so many ways.

No Exemptions

Living with a chronic illness (or illnesses) does not exempt you from being an asshole.

When I first had the inkling to write about this (ahem, almost two years ago now), I reached out the community itself. And I was flooded with stories of bullying, shaming, exclusion, and down right meanness.

And it baffled me. To a point.

I have been bullied my whole life. Mostly for my size/shape of body, some for my white spots (vitiligo), some for just being unapologetically me. So, it did not (and does not) surprise me that I have been subject to bullying within the diabetes community.

And many others have too. Far worse than my own experiences.

I was shocked to hear back from so many fellow people with diabetes who have been (are) subject to racism and other “phobic” behaviours.

I feel the need to interject and state my opinion here: there is no fear of different, only intolerance breeding hate. I sincerely dislike use of terms like “transphobia” or “homophobia” or “anything-phobia” when it comes to human beings.

If ever it was relevant, perhaps, middle-aged-white-man-phobia…

Several community members shared experiences about being the subject of racist jokes or memes.

Some shared stories of blatant racist actions.

And others just said it was bad, making them question why they even bothered trying to find a space within the diabetes community.

And I do not blame them.

Every community needs diversity.

A point I do not think should or need be up for debate.

Yet there remains a consistent issue of inclusivity and diversity.

Marketable Mayhem

I have said it before and I will say it again, this time with the backing of several community members, the mainstream diabetes community feels a bit like a cool kids only club.

More like a young, white, flat tummy and defined muscles, adventurers club!

So many community members have expressed there are times the DOC (diabetes online community), and even in real life events, are eerily cliquey. For me it harkens back to school days and those feelings of not belonging. There are organizations and events within the diabetes sphere (or should I say blue circle?) catering to a select few. A consistently repeated crew of folks.

Some of those doors are shut so firmly, it begins to feel as though they do not want anyone to get in…

The diabetes community is made up of so many wildly interesting people. I am profoundly grateful for all the different people I have met purely because we all live with diabetes. Without our shared diagnosis, those rad humans would have never appeared on my radar.

I just wish all of us commonplace, everyday folks were better represented and celebrated the way those doing above average, amazing things are…

You can live with diabetes, lead an extraordinarily ordinary life, and still feel accomplished.

It is a strange thing to live with a condition that is targeted by the marketing machine. Every day I wake up to offers (emails/messages/advertisements) from medical/diabetes devices companies, from diabetes accessory companies, diabetes coaches, diabetes this, diabetes that…

Sometimes it is beyond overwhelming.

And sometimes it is just plain annoying.

But it is almost always disappointing. It is almost always the same popular faces in all the spaces.

Not even in the products marketed but the events.

One community member said, “I’ve pulled out of the online community. I never thought it could be, but it IS terribly cliquey.” Another member said, “all the BIG accounts interact with each other, they are like a whole separate thing from the rest of us.”

And they are not wrong. It IS.

And it is terribly obvious.

While we may all live in our social media bubbles, those bubbles are transparent-ish, and what appears authentic is not necessarily so. But we all buy in anyway.

We engage with what we have been conditioned to find visually appealing. Society has groomed us to believe that the only bodies worthy of display are thin, white, cisgender bodies.

The homogenous nature of diabetes marketing has never sat well with me.

And I say all of this from a point of privilege, as a white cisgender woman.

A lot of BIPOC and LGBTQIA+ folks in the diabetes community will not turn down working with brands and organizations because they want to see more and better representation. So, they do the work. And are then criticized by other community members for their involvement.

There are so many people with diabetes still fighting to be seen.

The Business of Bullying

If there is one thing I am familiar (and perhaps, even comfortable) with it is being on the receiving end of someone else’s desire to hurt. I have been bullied in a variety of ways.

Passive aggressive bullying has woven its way into the diabetes community in such an unnecessary way, and left behind a toxicity that is exponentially spreading. Contagious, you might say.

No one has any respect for other people’s choices.

And this resonates throughout.

There are people and groups in the community who support and are supported by a variety of organizations. Yet some people are afraid to openly share that because of the criticisms and bullying they have experienced. Because of this idea that certain organizations are “bad.”

Some community members expressed frustration, saying there is too much animosity between the many different types of diabetes. Their exact phrasing, “Type 1s throw a lot of shade at Type 2s.”

There are people bullied and targeted for their size and shape.

One community member shared, “I have had Type 1 for many years, I have never been skinny, and every single day a T1D coach will message me and ask if I want to lose weight and get my A1c back on track. You know what? My A1c is perfect! And I am happy and healthy in this body.”

A lot of that judgement is derived from the misconception that Type 2 diabetes presents in larger or overweight bodies. In fact, when I was at my thinnest and people would find out I lived with diabetes, the most common response was, “how can that be? You are so skinny!”

Little did they know, I was so skinny because my diabetes and eating disorders were wildly out of control. I was not just thin, I was slowly killing myself. In fact, I was dying.

Living with diabetes seems to be give other people a false sense of authority over what we eat and put in our bodies, allowing them to question and judge us. Even other people with diabetes.

There is a lot of carb shaming that goes on behind the scenes…

One member said, “I never post pictures of me eating carbs because so many people comment that I shouldn’t be eating carbs.” Another said, “I like carbs, but I’m often told I shouldn’t eat them, or I feel guilty when I do because I see so many other diabetics going keto, and I feel like I should too.”

Diabetes seems to invite others to have an opinion on our bodies and how we manage our diabetes.

A community member reached out, and said, “I feel like I am not good enough a lot of the time because I don’t have a good A1c and sometimes I really struggle with my blood sugars. I know everyone has their bad days but there is still an idea that those bad days shouldn’t happen.”

It was expressed to me that there is a lot of shaming and blaming when it comes to management. Those on MDI feel pressured to switch to pump therapy. And those who prefer finger pokes feel less than because they are not using the latest FGM (flash glucose monitor) or CGM (continuous glucose monitor) tech.

I should point out that those sharing with me are fortunate to have access to such things. These are not comments relating to access or disparities in healthcare, strictly comments on judgements received from within the diabetes community.

There remains a strong undercurrent of “good vs bad” when it comes to living with diabetes.

I think a lot of it stems from the fact that the community is constantly flooded with images that support the use of certain technologies, specific diets, and present singular ideas of fitness and movement.

And those images suggest that to be a person with well-managed diabetes one must fit into a certain category or physique.

This harmfully bolsters the idea that thinness equals health.

With Involvement Comes Disappointment

I wish this post were a celebration of the diabetes community.

I wish I could confidently say that the diabetes community is one that truly gives all of us connection with others. A connection built on a foundation of safety and security.

The truth is the diabetes community remains broken. I would argue on occasion it is not a community at all, but instead a vast neighbourhood made up of tiny pockets of highly exclusive groups.

I am aware that this post may err on the side of a ramble. And for that I do apologize. It has taken nearly years and several revisions just to get here, and yet it feels as though there is so much more I could say.

But the words are failing me.

What I did was take the common points shared with me and express them to the best of my ability.

Community is central to the human experience.

Where people find support and who they support is a highly personal thing. People should not bully others for their affiliations or dictate who/where others find support.

A community should be an honouring of the diversity of skills with in. Your weakness and others’ strengths building each other up, and vice versa. Even though we have seen some changes in the community those changes have yet to change things.

A community should unite us and give us strength so that we can better support each other. No one should feel less than or ashamed because of how they manage their diabetes or the shape/appearance of their body.

A community should make us feel as though we are part of something greater than ourselves.

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