T1D Real Talk: Confronting the Harder Truths of Living a Life with a Chronic Disease

type 1 diabetes real talk

“If there ever was a good time to have diabetes in history, now is that time,” said an optimistic, caring, and very knowledgeable endocrinologist at a quarterly appointment with a patient, “…plus, the cure is probably 5 years out, so there’s that.”

Oh, how I loathe that last sentence. It seems as though the cure is always 5 years out. It was 5 years out when I was diagnosed at 12 and thought we’d have a cure before I finished high school. It was 5 years out on my 21st birthday and I thought I would be cured before I walked down the aisle at my wedding. It was 5 years out when I first started seriously considering if I should ever really try to have kids with a chronic disease and experience a difficult, high-risk pregnancy. The magical “5 years out” is a myth, and hurtful to people, especially children, when they are first diagnosed.

I love all of the optimism and positive aspects of the diabetes online community (DOC) and the power behind people and our ability to connect across space and time (zones). When children are first diagnosed with type 1 diabetes (or type 2), there’s a lot more hope out there for people than there was even 10 or 20 years ago. But sometimes I think all of that optimism and hope sets kids up to think that diabetes isn’t difficult and that there won’t be struggles in their future at all and, when they face those struggles, they don’t have the coping mechanisms to deal with them.

According to the National Institutes of Health, the prevalence of major depression in patients with diabetes ranges from 8-18%, while milder types of depression are reported to be present in 15-35% of people with diabetes. That is huge. It’s important to look out for the symptoms of depression and to not misguide those that are newly diagnosed with the notion that everything will always be normal and easy.

Depression and type 2 diabetes

Here’s some T1D real talk. Diabetes is hard. Diabetes is chronic. There is no cure, and it’s invisible. That’s really, really tough. It’s tough when you’re 400 mg/dL on a Tuesday morning, but still have to make that 8:00 a.m. meeting, because no one can see how awful you really feel. It’s tough when you’re trying to hike with friends, but you’ve gone low 23 times on the trail and want to give up.

It’s tough when job applications ask, “do you have a disability?” and you know the answer is a resounding yes, but in the back of your mind, you’re worried that you’ll be discriminated against and not get the job. It’s tough when people say, “Well, at least it’s not cancer.”

It’s tough when you’re a struggling college student and it’s just not fair that you have to buy insulin, and syringes, and test strips, and glucose tabs, and pay for specialists and pump supplies and lancets on top of being a college student and it makes you want to scream. It’s tough when you cry. And you’ll cry.

It’s tough when you have to know the vernacular of insurance companies and can translate the EOB (explanation of benefits) on bill statements for all of your family and friends. It’s tough when you have to introduce not only yourself, but your diabetes to every single significant person in your life, for the rest of your life. It’s tough that diabetes always seems to tag along.

It’s tough. Diabetes is painful. People who say it isn’t are under an illusion. A person with diabetes often feels like a pin-cushion and skin isn’t infallible. The number of bumps and bruises that diabetes causes is infinite. People will question everything you eat; people will question everything you don’t eat.

People will stare. People will ask if you’re carrying a pager (Hello, it’s 2017!), and most people won’t really understand the physical and emotional toll that diabetes takes on the body. (No, I don’t really want to answer the “So is your diabetes under control yet?” question again.)

People will always relate your diabetes to that of their grandma. People will ask if you can eat salt. People will regale you with stories of their second cousin’s girlfriend’s mom who had to have her foot amputated from diabetes (thanks). People will be scared, but the ones who stick around are worth their weight in gold.

But people will try. People will prove to you that they care. You will make real, deep connections with people that just get it. When you fall, you’ll fall hard, but when you stand, you’ll be taller (even by an inch). You’ll triumph. When we talk with kiddos and people that are recently diagnosed, let’s keep in mind to keep it real for them, so they’re not whiplashed with the reality of a chronic disease in a cruel, unforgiving world, leaving them ill-prepared for success.

Yes, diabetes is hard. Diabetes is tough. But diabetes makes people more persevering, more disciplined, more determined, and some of the hardest working people in the world. They’re tougher than diabetes. And so are you.

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