All Diabetes Awareness Month long, I’ve agonized over what I wanted to say, or what I wanted to spread awareness about.
I’m constantly talking about diabetes, but this month, more than others, I’ve just shared more.
I’ve talked about riding the highs and lows, all over twitter, I attended DiabetesMine University innovation summit and shared some words of encouragement through Instagram.
I hate having diabetes. I’ve embraced it, but over the three years since my diagnosis, I can confidently say it sucks.
Diabetes sucks
Every type of diabetes sucks — type 1, type 2, LADA, gestational, pre. All of them.
But I can’t help but think that type 2s live with a constant state of shame and stigma.
And if we’re being real, all people with diabetes have some stigma hanging over them.
It’s usually explained pretty quickly.
“Until you’ve been on the side of stigma, it’s really hard to understand why those words cut so deeply.”
And we’ve all seen it. Maybe you’ve seen someone say:
I don’t have that type of diabetes,” or
“My diabetes wasn’t my fault,” or
“Type 2 should be called something else, because it just confuses everyone.”
Oftentimes when someone tries to explain that they don’t have type 2, they throw type 2s under the bus…and run us over with it.
It’s made to feel like type 2 diabetes is this horrible thing to be associated with.
But until you’ve been on the side of stigma, it’s difficult to understand why those words cut so deeply.
It makes me feel like garbage
It didn’t take me long to come to terms with my diagnosis.
I had the instinct to embrace it because I knew that the more I pushed it aside and pretended it didn’t exist, the longer I would jeopardize my health.
I was 26 years old, when I was diagnosed, so I found a way to make it all fit together.
And even though I don’t hide my diagnosis from anyone, and even though I lead with it, there are some days where I feel like a garbage human being.
There are days when I read comments about diabetes online, and I clench my teeth.
There are some days where I’m tired of the emotional labor that comes with defending my diagnosis, or asking people to just think about the words they use when defending theirs.
No one should live in shame about their diabetes. It doesn’t matter how you got it.
It doesn’t matter the type. It doesn’t matter what you look like or how you live. What matters is managing it as best you can. End of story.
Being type 2 doesn’t mean I’m lazy. It doesn’t mean I eat too much, it doesn’t mean I’m not trying. It’s an unfair generalization that won’t go away for people with type 2.
There are more factors than you think
“I can’t think of many other diseases where the patient is blamed for their illness.”
People often talk about how much you eat, and how much you weigh as factors for diabetes, and it’s the constant focus.
Genetics is often left out of the conversation.
So are socioeconomic factors like access to healthcare, transportation, funds for co-pays, affordable insulin, living in food deserts, how much time you can take off of work to go to the doctor, and more.
Even in the health care system, type 2s aren’t always afforded the same compassion.
Doctors can be judgemental and dismissive, or so busy that they can’t spend as much time as you need with them to answer questions.
It took a year after starting insulin before my doctor sent me to a dietitian who could explain what a carb was, or what a basal rate was, or what a bolus was.
I also never learned how to take insulin at a doctor’s office. To be fair, I didn’t ask because of the shock of it all t, but you’d think before I left that office, someone would have explained it to me.
It was 3 years before I ever got access to diabetes tech like a Constant Glucose monitor.
A few years ago, CGMs weren’t even considered for people with type 2 . The technology wasn’t a part of the standard of care.
It’s not just our own community perpetuating bad stereotypes
Even advertising perpetuates unfair myths. Sure, it’s a risk, but not everyone with diabetes loses their limbs. Also, it’s weird that he’s smiling. It’s also strange that they made this all about sugar.
Oh, and don’t worry, there are plenty of ads like it.
Blame, shame and stigma are still placed on the person with diabetes.
I can’t think of many other diseases where the patient is blamed for their illness.
We are doing the best we possibly can
I think I deal with stress and anxiety every day when it comes to my diabetes. But I’m always anxious about the judgment that comes with revealing a type 2 diagnosis. I’ve shared it so many times, but I still brace for impact.
But I and others with type 2 are doing the very best we can. That’s the one positive thing I can say.
Shame, stigma, and broad-brush generalizations aside, many of us with type 2 diabetes are living full, joyful, and healthy lives.
There’s no need to shame anyone else to explain your diabetes.
And I’ll scream that from the rooftops for anyone who will listen to me.
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3 Responses
I feel like this everyday of my life. I’m not a overweight person and I used to eat healthy except that last month when I was diagnosed, I was craving lots of sugar and I was eating horrible food, but people always make me feel like it is all my fault, just because my weight is 145 instead 106 like I was before, some people will say “you’re not even fat, what happened?” and I just hate comments like this in general because I know how others will feel if someone say something like this to them, I even got a comment saying that maybe my diabetes was “mental” like wth? when did I woke up and though it was a good Idea to have diabetes? jeez! All I can say is…It is not your fault, it doesn’t matter if you are “obese” which btw I hate that word! I didn’t know food will damage and make your pancreas stupid because that’s what it is END OF STORY…I’m skinny with a little bit of belly and I still have type 2 diabetes so you can tell people to shut up and ask them to read more about diabetes, they don’t even have the knowledge and they think is right to judge or talk about it. It is not cool! I’m living proof of diabetes type 2 is not about “fat” in your body.
I’ve never felt ashamed or stigmatized and am very open and straightforward about my disease. I have, however, been made to feel like garbage. My marriage ended when my ex-wife found out I had diabetes. She is one of the ones who lives under the assumption that all diabetics lose their limbs and become burdens to their family and loved ones so she chose the easy way out and filed for divorce taking my daughter with her. That’s a hard pill to swallow. The fallout from that situation made a bad situation far worse and now I find that I am angry with myself. That makes it hard to want to keep on keeping on with taking care of myself as diabetes has stolen more than just my health from me. It has cost me everything I ever loved in my life. I like browsing the recipes on here. It has made me realize that I can still enjoy good food and life while taking care of myself. I made the choice to stop taking insulin, blood sugar readings, etc… My path forward is to let this disease take it’s course while doing everything I can through diet and exercise. I know my days are numbered, but I have come to terms with that. I use these recipes a lot and want you to know that what you’re doing is quite literally a lifeline for some of us out here. Go forth in your life and be bold, be brave, and never let stigma or shame rule your world when it comes to diabetes. Keep up the good work, Mila.
It is not your fault and I’m in tear reading this right now. I don’t think is fair for you to blame yourself, I feel like my story of being skinny with type 2 will make you feel better. The world and even doctors will make you feel like type 2 is your fault and it is just for overweight people and it is very important that you understand that it’s not, even my endocrinologist didn’t believe I had this. He made me feel bad and like I was being a drama queen, I left a comment earlier but we need Mila to post it. I was 110 my whole life, I came to America and gain like 25 pounds so I was between 145-130 and when I had my symptoms I was 106 I was practically dying. I get stupid comments like “you’re not fat” but “that’s what you get for eating to much candy” that part was true, I used to eat a lot of candy but I used to eat healthy. Nuts, broccoli, wheat, vegan food, a lot of lettuce etc. and even eating like that I got the diagnosis of Type 2. Let me tell you, it has been the worst thing that happened to me, I’ve been a mess since then and this illness takes a lot of space in my mind and I’m constantly worry. I know how hard it is to live with it and get that constant shame from other people, even from type 1 diabetic who think they are better than us because “we brought this upon ourselves”. All I can say is, start thinking about you and stop worrying about other people, if your wife left you because of your illness let me tell you she’s not worth it, someday karma will take care of her. It was not nice for her to make you feel like this. Go talk to a therapist sometimes that helps, do a little bit of exercise everyday day, 20 minutes is not that bad when you get used to it, I promise you will feel better. It is horrible but we are warriors and we can live with it!