Today is World Diabetes Day, and since many people I come across often confuse Type 1 and Type 2 diabetes, I want to take this opportunity to address a few myths about Type 1 diabetes.
But before I do that, I want to reflect on the distress of this past week. I’m not much of a political activist, and I was never enthusiastic about any of the candidates this election cycle. But having come to terms with who our country just elected to represent them, I feel I need to be more vocal (at least about the issues that affect me on a personal level), and I need to be better about standing up for those whose rights are in jeopardy.
That is my personal commitment in light of these election results. I will not judge based on your vote, and I will not give into the hate that is now plaguing our country (although it was difficult not to hate the white heterosexual male this past Wednesday but that’s unfair because I know plenty of white heterosexual males who voted in my favor).
But there’s something you have to know going forward. I’ve written about it a few times on this blog but not in depth. Mostly because I don’t like to give energy to negative entities, and I don’t want to draw myself into contentious battles with fellow family members and friends. And even though I wasn’t surprised by the outcome of this election (you have to remember I grew up in a red, conservative state), I was disappointed.
And for two nights straight I couldn’t sleep. I was terrified of the world we now live in, and I was worried for my own well-being. Some of you may not know how difficult it was to live as a Type 1 diabetic in this country prior to the implementation of the Affordable Care Act (ACA). Fortunately, I didn’t live in it long before Obamacare took effect, but the few years I did spend in that climate caused so much physical and mental damage that I don’t even like to talk about it anymore.
The truth is in this capitalistic climate, I need health insurance to live. And I need good health insurance to afford the supplies I need to live. Before the Affordable Care Act, that meant I couldn’t chase after my dream job – I had to chase after the job with good benefits. Before Obamacare, I could never be uninsured. And each time I switched insurance plans, I had to show proof of continuous coverage, or they wouldn’t cover anything related to my diabetes for up to six months or more (that’s thousands if not tens of thousands dollars out-of-pocket right there!).
My supplies are expensive. Pharma knows I depend on these supplies for survival so of course they’re not cheap. And what happens if I don’t have access to these supplies? I end up in the emergency room or worse: dead. Before the Affordable Care Act, I had two seizures because I couldn’t afford the diabetes supplies that would enable me to better manage my condition because my health insurance wouldn’t cover them because they weren’t “cost-effective.”
Before Obamacare, I spent $1,500 in one month as a student because my health insurance would not cover my diabetes supplies anymore, and I needed the insulin to survive. I’m still paying off that debt. I once had to grapple with spending $800 per month on employer-sponsored insurance because I was a contractual employee, and no other health insurance company would cover me because I had diabetes.
So when the ACA was fully implemented in 2014, I felt free to live the life I wanted without having to tie myself to a job for the sake of good health insurance and affordable, accessible supplies.
And now I’m terrified. Because suddenly everything I had aimed to achieve with my life doesn’t seem realistic anymore. Will I be able to access health insurance? Or will I be denied because of my condition? But without health insurance, will I be able to afford my insulin? Will I be able to afford my test strips? I currently spend $2,500 per year out-of-pocket on diabetes supplies, and that’s with employer-sponsored health insurance. If they repeal the ACA, am I going to go bankrupt just trying to survive?
These are questions (among many others) that have been haunting me this past week. I’m terrified, you guys. But I am also resilient. I still have two more months until our new president-elect takes office. And until then I’m going do my best to enjoy this comfortable life I took for granted and maybe stock up on as many supplies as my coverage will allow. I will survive this. And I will be here for those who need a listening ear.
Now on to some busted myths!
Type 1 diabetics can’t eat sugar.
False. I can eat all the sugar I want. It may not be good for my body, and my disease makes it a lot harder to process the stuff, but that’s what my insulin medication is for. I just shoot myself with this wonder drug (after approximate calculations, of course), and voilà! My blood sugar spikes for the next two hours, and I feel like shit, and then immediately regret the sugar rush. So hence why you may not see me gorging on pastries and parfaits at a work event.
Diabetes can be cured with diet and exercise.
True and false. Some versions of Type 2 can be eliminated with maintenance of the proper diet and exercise, but there is no cure for Type 1 diabetes. That’s what JDRF is working so hard to change, and that’s why the recent FDA approval of the hybrid artificial pancreas is so wonderful for all T1D’s all over the world. But sticking to a healthy diet and exercise routine definitely helps Type 1’s like myself manage their blood sugar levels and maintain overall health.
Can’t you just take a pill?
False. In Type 2, the pancreas is still producing some insulin. In Type 1, the pancreas is producing no insulin so I must inject myself with insulin to digest the carbohydrates I eat. Type 1 is autoimmune, meaning for some reason, the body started attacking the pancreas, rendering it useless, and we don’t really know why. So unless a cure is discovered, I will be doing this for the rest of my life.
Diabetics must stick to a gluten-free diet.
False. I don’t even know where this myth arose. Unless you have celiac disease, gluten-free food is not a necessary diabetic staple. I personally try to stick to a low-carb diet.
Diabetes is your fault.
If someone ever said this to my face, I think I would punch them. Diabetes is not my fault. It was hard not to blame myself in the beginning, but that would have been stupid. I take really good care of myself. I always have. I’ve never been overweight. I’ve been actively working out since I was 13, and I started paying attention to the foods I ate many years before I was ever diagnosed with Type 1. I don’t know why my pancreas stopped working. I may never know, but I have accepted that this is a condition I can live with, and I do believe because of its challenges and high maintenance persona, it has made me stronger and more aware of my own body.
Only kids get diagnosed with Type 1.
False. I was diagnosed at 22. I had no family history, and I’ve met a few adults over the years with similar experiences to mine. That’s why they changed the name from juvenile diabetes to Type 1. Just like most autoimmune diseases, adults can get them, too. And if you think you may be at risk, there are certain genetic tests you can take to evaluate the possibility of getting the disease. Just ask your doctor.
You can live with Type 1 diabetes.
True. As long as you have access to medication and supplies, this disease is manageable. It’s live-able. Many Type 1 diabetics live long, fulfilling lives. Hell, the first person with diabetes climbed Mount Everest a few months ago. You can do this. And you are not alone.
I’m coming up on eight years with Type 1 diabetes. It’s crazy to think I’ve only managed less than half my life with this disease. It seems like so much more than that. This condition has changed me. I am not the same person I was pre-T1D. I like to think I am a better person for it.
Just like the recent election results, there’s nothing I can do to change it, but I can keep fighting. And on this World Diabetes Day, I am going to keep advocating so that one day, children will not have to grow up with Type 1.
I encourage you to join the fight. Get educated. Become aware. Spread the word. Volunteer. Give back. And if you’re the donating type, then I highly recommend you donate to JDRF, the leading global organization funding Type 1 diabetes research. They’re aiming to turn Type 1 into Type none.
I am, too. Here’s to us. And our future.
And if you ever need a reprieve, here’s the most relaxing song ever.