CW: contains mentions of disordered eating, diabulimia and other sensitive subject matter.
A recent series I’ve been working on has made me feel like diabetes stigma is everywhere.
It’s not like I didn’t know that. I’ve been fighting diabetes stigma within the bounds of my own care and presence online since I was diagnosed in 2016.
Embodying a lot of the stereotypes (fatness, blackness, loving food) surrounding diabetes meant that I spent too much time being misdiagnosed with diabetes, wasting money on medications that I didn’t need to be taking, and feeling ashamed that I couldn’t get an A1c under 6 without sacrificing my mental health, or engaging in practices related to diabulimia (not taking insulin so I would lose weight, over exercising to bring my blood sugars down).
I think back to the initial days of my diagnosis, and being afraid to tell anyone – even family members who had diabetes – that I had diabetes.
I think back to all of the times I felt shame in the doctor’s office.
When I was told getting put on insulin meant I wasn’t doing enough (incorrect), or having to add medications to my routine meant I wasn’t working hard enough to get my a1c down (also incorrect).
I remember the feeling of relief when I found out I was misdiagnosed, and not just the lazy person my doctors led me to believe I was.
More than the medical system though, it’s the outside world that has a gross misunderstanding of diabetes.
The shaming happens in broad daylight. It often happens at the expense of people who are overweight, or around certain foods (ones that are sugary, or sweet).
It happens to me on a near daily basis on the internet.
I choose not to specify that I have LADA (unless someone specifically asks, or it’s in a bio) because in the end for me it only really matters in my doctor’s office, and for insurance purposes.
If I’m advocating on behalf of all people with diabetes, what does it matter what kind of diabetes I have? It doesn’t.
But, because of what I look like, the assumption is that I have type 2. So I get messages every day telling me to lose weight and I’ll “control” my diabetes better, or that having diabetes is my fault because I’m overweight.
Or asking if I’ve tried dieting to manage my blood sugar.
Literally from strangers who don’t realize that I’ve lived through an eating disorder, I make time to exercise most days out of the week, and I also take very good care of my body because I want to – not because of what I want to look like (although it has been a bonus).
It happens constantly. I’m able to find almost 10 examples per day to prove my point.
Our community isn’t exactly immune from stigmatizing language either. Sometimes, to defend having diabetes to others, people will say things like “well I didn’t cause my diabetes,” or “my type of diabetes isn’t caused by what I eat.”
While those things are well-intended, and true, and valid they often shade others, and make it seem like diabetes is someone’s fault per their type, and keep perpetuating stigma toward people who don’t deserve it.
The truth is: none of us asked for diabetes. None of us have diabetes directly caused by food, and while type 2 diabetes can be preventable, or its onset delayed, it’s still not your fault if it happens to you.
I’ve been grappling with feelings of shame again because of everything I’ve read to do this series on diabetes stigma.
It’s made me dig in my heels a little bit even more to recognize that anyone who blames someone for their illness, regardless of it being their “fault” or not, is just a garbage human being. Seems harsh, but it’s how I feel.
What I’ve learned is people can change their attitudes once they know why shaming people is inappropriate and wrong. Once you teach them, and you give them context, it can help them form a new opinion.
I keep seeking out examples to correct (and publicly correcting them) because I want other people to stand up, and firmly say “you will never make me feel shame about diabetes.”
There are going to be some of the worst people who say we should feel shame, but they will never understand.
But the thing is, everyone knows someone with diabetes. And what people who judge and shame probably don’t realize, is those closest to them with diabetes, or complications from diabetes, are glaring at them.
Many of us are here living through hell.
We’re fighting for the right diagnosis. Fighting for the medications we need to live. Fighting our insurance companies on coverage, or fighting to be heard when we know something is wrong. Fighting to find a healthcare provider because the ones we need are in short supply. Fighting people who tell us Walmart Insulin is the answer to the insulin price gouging crisis. Then on top of that, we have to argue with people who don’t believe we have the right to live, or to have affordable treatment options because our disease is our fault.
The more I think about why I harp on diabetes stigma so much is because it’s not just about asking for kinder words, or the respect for what we deal with every day. It’s because the misconceptions and the stigmas keep us from getting the care we deserve and the allyship of people without diabetes for the fight for insulin and overall accessibility to all medications, tech, and the healthcare system.
When people think managing your disease is as easy as eating right and exercising, they will never, ever believe that you have the right for your medications and the tools you use to survive to be accessible. They think you should be punished for whatever they believe you did to deserve diabetes.
So, I may be fighting this a little differently than anyone else. It may seem superficial to make YouTube videos and call out diabetes stigma when I see it, but I keep doing it because we don’t deserve to be shamed, or to have to correct every incorrect misconception about diabetes we find for the rest of our lives.
But more, we deserve people to take us seriously and understand even the basic complexities of a life with diabetes.
We are doing what we can every day to make life with this horrible disease livable for the longest time.
There is no shame in that. And there never will be.