Sugar-coated Misconceptions: Raising Awareness for Type 1 Diabetes
It’s that time of year again. November is National Diabetes Awareness Month in the United States, and I am more inclined than ever, going on 25 years of life, to help people understand what it means to live with a chronic disease in 2018.
The point of this post is not to beg you for your money to fund a cure, though, if you have the resources to donate, I hope you consider it. The point, for me, is to raise awareness so that the type 1 diabetes community can create more advocates to fight for healthcare reform.
BeyondType1.org recently reported that the cost of insulin should only be up to $130/yr., while the typical insurance out-of-pocket cost for patients can be almost $500/mo.; therefore, costing patients thousands of dollars every year to get the medications they simply need to survive. Those without insurance are, for lack of better terminology, pretty much screwed.
If alarms aren’t going off in your head around this, or if you’re new to the American healthcare system or with the disease itself, please do your research and talk to someone who is affected. Odds are they are either to your left or right, or in both directions, whether you are speaking with a neighbor, co-worker, friend, or family member.
I’m not just talking about type 1 diabetes with that either, but any illness that requires daily medication. There are many that do, and our healthcare system is lacking support, taking stabs at hearts, minds, and pockets everywhere.
Often, chronic conditions like type 1 diabetes, are almost invisible to the public eye, because people managing these conditions must work so hard in their lower or middle-class jobs just to survive, sometimes taking on more work to afford their next vial of insulin, and have slim to no time to advocate — not nearly as much as they’d like, anyway. It may sound like a dramatization, but, trust me, I know the story well, and it is the furthest from theatrics.
Much less, you won’t often hear people in the type 1 diabetes community complaining. People in the community that I have come to know are very strong in all the ways you can be. You have to be, in a lot of ways. They don’t complain to bring attention to the disease, but distribute facts, advocate, and inspire in order to bring the cruelties of the American healthcare system and the condition itself to light.
Things have not gotten much better for the type 1 diabetes community, or, perhaps they are getting better too slowly.
This disease should not affect children, but it targets them and has continued to, at what seems like a larger scale than in year’s past. Perhaps we are on our way to becoming more vocal about it, and the disease itself is becoming less invisible due to the power of social media networking, though. I’d like to believe the latter, and, the truth is that you can be diagnosed with type 1 diabetes at any age, despite it being more common in youth.
For those without the disease or for those who do not know someone they love with it, it often is not a topic of conversation, and, to be fair, why would it be?
I have admitted and will continue to fess up to the fact that if I or a loved one did not have the condition, I would not know about it. It’s true, and it’s sad. We can all do better to learn more about our loved ones and lend a helping hand to our local and global communities. I know I have a lot to learn about life, science, the people around me, and more. That comes with time, experience, research, and ample conversation, all of which I intend to pursue in life.
The general public, celebrities, and media often get type 1 diabetes wrong. Take the example of Dax Shepard from my latest works published in Consumer Health Digest, “Citizens Dependent On Medications, Under a System they Can’t Depend On”. After seeing this, I reached out to Dax via Instagram DM to address his misconceived updates, and have yet to hear back. I do not believe I did so in an angered or condescending way. I honestly hope he saw it that way and would love to help educate and bring awareness to his life. I think he’d like that too based on the recordings I’ve heard of his new podcast, “Armchair Expert”. Dax, if you would like that, please don’t hesitate to reach out. I have loved listening to conversations on your podcast about life. You seem open-minded.
While Dax is an example, the only reason he is is that he’s a celebrity. I don’t expect him to know everything or have a doctoral background with the condition. Of course not! All I can hope for, as like with anyone, is that they listen when advocates speak up. Simple.
I am only disappointed when I feel I have done my part to help make anyone aware and teach them, and they do not reciprocate with efforts to become more cognizant over time. I understand sometimes you need reminders, but there are limits to everything, right? We can only give so much of ourselves before we need a little bit back. This is not to say everyone should be a professor of type 1 diabetes either, but have a general awareness and understanding of the condition so that they can better serve or communicate with the public when they are in a position of power. Everyone can make better efforts, overall, to have better understandings of public health, health crises, advocacy, causes, etc.
If there’s anything I want people to know about type 1 diabetes, it is the truth, so, I would like to dispell some common myths for you …
- “Type 1 and type 2 diabetes are basically the same things.” — In fact, they are different diseases and are NOT the same thing. Though they are often grouped together, type 2 diabetes is caused by lifestyle choices: poor diet and exercise habits. Often, people with type 2 diabetes are not dependent on insulin and can reverse the effects with the right diet and exercise plan.
Type 1 diabetes is not curable. You are often diagnosed in youth, and, of the millions of adult Americans suffering from diabetes, only about 5% have type 1 diabetes; the rest, at 95%, manage type 2. These statistics come from a recent study from the American Diabetes Association. People with type 1 must manage it their whole lives, until a cure comes, with insulin injections, which they are dependent on. They may also use a pump or Omnipod technology to manage it. CGMs (Continuous Glucose Monitors) are also of benefit compared to its parent predecessor, a blood glucose monitoring machine. Many still use them. I know I do. They are more cost-effective, but do a number on your skin.
- “People with type 1 diabetes can’t have sugar.” — This is, in fact, a myth. People with type 1 diabetes can have sugar, and, sometimes, need it to survive when suffering from low blood sugars. It is true that too much sugar can lead to ketoacidosis or hyperglycemia. People with type 1 diabetes learn to manage their blood sugar levels with diet and exercise during their original introduction to the disease, often, during a prolonged hospital visit (a few weeks, on average, depending on the diagnosis stage [early vs. late]).JDRF describes the experience of having type 1 diabetes briefly, but well, in their general log of information: “It can be difficult and upsetting to have type 1 diabetes. It can be life-threatening, and it never goes away. T1D is affected by every bite you eat and every jog you go on. Despite this, people with T1D serve as an inspiration by facing the disease’s challenges with courage and perseverance, and they don’t let it stand in the way of achieving their goals.” Through and through, I could not agree more.
- “T1D is contagious.” — It’s not. Not at all. There’s really nothing more to say about this ridiculous misconception.
- “You can outgrow type 1 diabetes.” — Unfortunately, you can’t. There is no cure. Therefore, those managing it must learn throughout their lives. While, in my opinion, it is good to be hopeful for a cure, it is also good to be realistic and to plan for life’s phases while living with the condition. It is manageable and treatable, and, as technology advances, it can become even more so when you can afford it. Yet, many resort to insulin rationing to survive, which is a tremendous and growing problem within the community, and is a whole other series of articles in itself … For the purpose of this post, my point is, despite the many shortcomings, there are lessons that teach those with type 1 diabetes to be stronger, healthier, more aware, active advocates, grateful, responsible, and accountable than ever before. Type 1 diabetes is a burden, but it is also a lesson, and a daily opportunity and reminder to grab life by the horns. It’s too short already — live one you’re proud of, and that reflects your true self. What have you got to lose?
- “You can’t be active or participate in sports with type 1 diabetes.” — This isn’t true. You can still do the things you want to, but perhaps more carefully and with more consideration than others. Preparing your body for physical exertion is most effective when you know yourself, and listen to your body. You must monitor how it reacts, and learn to be patient and take things slow. You must also learn not to become easily frustrated by radical blood sugar levels. As like many things in life, truly feeling this way and living this ideology comes with age and experience. Despite how much control you may have, sometimes the body plays tricks and it’s truly out of our control. Treat your body well, and with kindness. Type 1 diabetes is not your fault. How you perceive your life with it, however, can be your fault or grace. Choose wisely to live happily and healthily with your emotional and mental states. Don’t be afraid to give in to frustration, just don’t linger there too long. Feel out the bad moments, then move forward. Don’t let them bring you down. Keep going. Get right back up. Find balance. Then, when you can, and hopefully it’s as much as possible — lean into happiness. I may be getting off on a tangent with the facts, but when there’s a moment to speak to my community and show my support for their daily challenges, you can bet that I’m going to take it …Now, back to it –
Though scientists are unsure exactly what causes the disease, they are led to believe it is caused by environmental or genetic factors or viruses.
There are many disparities surrounding type 1 diabetes: economically, physically, mentally, emotionally, and so on; and these disparities are present in everything a person living with it does 24 hours, 7 days a week.
Despite that, I live a happy life with type 1 diabetes. There isn’t another option. Whatever you have going on in your life, how you handle and perceive it makes all the difference.
Whatever you can do to support people with type 1 diabetes, bring awareness to the community, and advocate for a cure and/or healthcare during the month of November and onwards, I thank you and appreciate your efforts.
I truly believe that when we unite for the common good, we can make a change. There is power in using our voices and taking action on our passions. All we need to do to start a cause is speak up, and the effect will be rewarding so long as we work with persistence, drive, hope, open-mindedness, strategy, and respect.
As I said in my recent piece for Consumer Health Digest:
“Healthcare reform doesn’t happen when you lean into the silence. It happens when you speak up and become active.”
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Thank you.
Originally published at juliarflaherty.wordpress.com on November 3, 2018.
