If you or someone you know has T1 Diabetes...
Get help.
It's a long battle and you are going to need all the help you can get. For a long time, I thought I could manage on my own since I was diagnosed at 24 and living a relatively successful life. I had a college degree, a job, a rental in a pretty little setting, a dog and a boyfriend. And so my independant, headstrong nature allowed me to take my sudden and unexpected diagnosis in stride. I could figure out the numbers, the goals, the insulin shots, and the management all by myself. Good for me.
I had a kind and supportive group of people around me, who felt bad for me, and like me did not really understand what Type 1 Diabetes was, but tried their best to understand and embrace it. I even had family come to an educational class about the disease.
And here I sit 15 years after, with my own little family of three children, a husband, my home in a pretty little setting, a masters degree, a dog, two cats, and some chickens, and a wide net of people I call friends.
But I sometimes feel more alone in this battle than I ever have.
Because I look healthy, and act healthy (mostly), I don't think many people realize I am battling every day to keep my health in good standing. And as a T1 Diabetic, I'm grateful that I can work, and parent, and carpool, and socialize, and battle the insurance companies and medical supply companies on my own. But as I age I see that there is a real toll that T1 Diabetes continues to take on me and my family.
I worry about my ability to do math constantly, my will to stand up for my health to doctors and insurers, to keep a hopeful eye to the future of curing T1D, to teach my children how to handle adversity. Writing is often my therapy, and with this blog, I hope to connect with others who may feel the same way I do, or who may want to prepare themselves for the many ups and downs that go with T1D.
I have known on my own that I needed to handle the fears that go along with being a Diabetic, but only recently did I realize I needed a therapist who could guide me through strategies.
I had known that my crankiness associated with a high blood sugar would affect how I parent and how I am as a wife. Only recently did I bother to start searching online for helpful articles, only to find exactly what I thought-not a ton of research done on the matter, but the acute awareness that it may be an issue...
"There is literature on the importance of relationships for patients with type 2 diabetes, but very little research on psychological and psychosocial issues of adult type 1 patients at all. They get a lot of attention when they’re kids, then it just drops off completely," she says.
Type 1 Diabetes Puts Strain on Marriage
In the article, it suggests that doctors take a moment to realize the whole person who is a Diabetic and to ask about their relationships. This is probably a good idea for any doctor dealing with any patient with any illness. In my entire time as a Diabetic, I have not had a single doctor ask me about my relationship with my family. Or any relationships for that matter-friends, coworkers. Doctor-patient communication is so valuable if it exists, and so many issues from depression, anxiety, no money for insulin should be addressed with every adult Diabetic. I can honestly say that those issues have only been addressed with the doctors I have seen because I brought them up, not because my doctor asked me. Are doctors aware of the complications of this disease, but don't have the time or resources to dive into them because they are complicated and delicate? Fortunately, we have an online community and many resources in our cities like GLU, JDRF, Insulin for Life and more. But there is more work that needs to be done, and people are still in need of affordable, dare I say free, insulin. This is a heartbreaking reality https://www.nytimes.com/2018/03/05/health/drug-prices.html
I am by nature a person who wants to fix things and make them better, and by writing my fears and worries, I'm not sure I do much fixing. I do try to be hopeful and show that this Diagnosis is not the end of the world, and is in fact manageable. I believe I am a genuine person who does not tend to shy away from the truth, especially in my writing. It can be scary, and sometimes uncomfortable putting that face of T1D out to the wide world. There are so many issues that so many people face daily, from sickness to poverty, to unsafe living conditions, and abuse. What is a woman with T1D worth worrying about?
But if I didn't write the struggles that I have personally faced, I don't know how I would be helping. I really do believe that out of darkness comes light and I try to hold that close to my heart when times are tough in this life.
So here is my hopeful twist. Some simple ways for you as a person with Type 1 Diabetes to explain to your loved ones your needs, or if you know a Diabetic, a little insight.
1. Laugh. It's a tricky disease, and there are many little details that can run you ragged. The more you laugh, the easier it is. I'm still learning this because Diabetes is so very serious. I'm so thankful for my goofy kids and their beautiful outlook on life. They help me to smile and remind me if it's been a while since they have heard me laugh.
2. Be aware. I did not mean to type beware as we are not to be feared and avoided. I hope this isn't read as a warning- but more of a request for being present and observant. Diabetics are by nature of their circumstance distracted. There is always a device, or a needle, and medicine close by, and the need to be conscious of our numbers. It is likely that if you run into a Diabetic in or around the kitchen, or near mealtime, they are computing numbers (carb counting) in their head. Please understand they may not be ready for easy conversation-just yet. Think of a teenager struggling with math homework.
3. Learn. Diabetics have to explain a lot to a lot of people like new bosses, new friends, new loves. If you are lucky enough to be in a long-term relationship or have children, learn and teach them about the disease and try your best to understand how to help in times of low or high blood sugars. Knowledge is power, and incredibly comforting.
4. Check in. Just ask how things are going and listen. It is a true act of kindness to simply listen. I always say listening is an act of love.
5. Please don't judge. We have to eat every day just like everyone else. Let us eat and enjoy the food. If you are curious about our choices then ask and keep this in mind; a banana is like a piece of cake when it comes to carbs and insulin requirements. Weird, isn't it?
6. Encourage. Living a healthy life with a chronic disease is truly an accomplishment. Every day. I'm proud that I just wrote that because I am constantly frustrated with myself when my sugars are high. Only recently did a Diabetic Educator say to me "you are not a bad Diabetic." That was the language I chose to use for so long. But she reminded me that it is separate from who I am and it is something happening to my body. I have to react daily to what Diabetes is doing to me and I'm still standing, still walking, still living my life. Hooray for me!
7. Accept. It's not going away, we are carrying a deficient pancreas and we wish we weren't. We wish you did not have to deal with it too. But we do, and we are and we are doing our best to make each day meaningful and special, or if nothing else, normal.
It's a long battle and you are going to need all the help you can get. For a long time, I thought I could manage on my own since I was diagnosed at 24 and living a relatively successful life. I had a college degree, a job, a rental in a pretty little setting, a dog and a boyfriend. And so my independant, headstrong nature allowed me to take my sudden and unexpected diagnosis in stride. I could figure out the numbers, the goals, the insulin shots, and the management all by myself. Good for me.
I had a kind and supportive group of people around me, who felt bad for me, and like me did not really understand what Type 1 Diabetes was, but tried their best to understand and embrace it. I even had family come to an educational class about the disease.
And here I sit 15 years after, with my own little family of three children, a husband, my home in a pretty little setting, a masters degree, a dog, two cats, and some chickens, and a wide net of people I call friends.
But I sometimes feel more alone in this battle than I ever have.
Because I look healthy, and act healthy (mostly), I don't think many people realize I am battling every day to keep my health in good standing. And as a T1 Diabetic, I'm grateful that I can work, and parent, and carpool, and socialize, and battle the insurance companies and medical supply companies on my own. But as I age I see that there is a real toll that T1 Diabetes continues to take on me and my family.
I worry about my ability to do math constantly, my will to stand up for my health to doctors and insurers, to keep a hopeful eye to the future of curing T1D, to teach my children how to handle adversity. Writing is often my therapy, and with this blog, I hope to connect with others who may feel the same way I do, or who may want to prepare themselves for the many ups and downs that go with T1D.
I have known on my own that I needed to handle the fears that go along with being a Diabetic, but only recently did I realize I needed a therapist who could guide me through strategies.
I had known that my crankiness associated with a high blood sugar would affect how I parent and how I am as a wife. Only recently did I bother to start searching online for helpful articles, only to find exactly what I thought-not a ton of research done on the matter, but the acute awareness that it may be an issue...
"There is literature on the importance of relationships for patients with type 2 diabetes, but very little research on psychological and psychosocial issues of adult type 1 patients at all. They get a lot of attention when they’re kids, then it just drops off completely," she says.
Type 1 Diabetes Puts Strain on Marriage
In the article, it suggests that doctors take a moment to realize the whole person who is a Diabetic and to ask about their relationships. This is probably a good idea for any doctor dealing with any patient with any illness. In my entire time as a Diabetic, I have not had a single doctor ask me about my relationship with my family. Or any relationships for that matter-friends, coworkers. Doctor-patient communication is so valuable if it exists, and so many issues from depression, anxiety, no money for insulin should be addressed with every adult Diabetic. I can honestly say that those issues have only been addressed with the doctors I have seen because I brought them up, not because my doctor asked me. Are doctors aware of the complications of this disease, but don't have the time or resources to dive into them because they are complicated and delicate? Fortunately, we have an online community and many resources in our cities like GLU, JDRF, Insulin for Life and more. But there is more work that needs to be done, and people are still in need of affordable, dare I say free, insulin. This is a heartbreaking reality https://www.nytimes.com/2018/03/05/health/drug-prices.html
I am by nature a person who wants to fix things and make them better, and by writing my fears and worries, I'm not sure I do much fixing. I do try to be hopeful and show that this Diagnosis is not the end of the world, and is in fact manageable. I believe I am a genuine person who does not tend to shy away from the truth, especially in my writing. It can be scary, and sometimes uncomfortable putting that face of T1D out to the wide world. There are so many issues that so many people face daily, from sickness to poverty, to unsafe living conditions, and abuse. What is a woman with T1D worth worrying about?
But if I didn't write the struggles that I have personally faced, I don't know how I would be helping. I really do believe that out of darkness comes light and I try to hold that close to my heart when times are tough in this life.
So here is my hopeful twist. Some simple ways for you as a person with Type 1 Diabetes to explain to your loved ones your needs, or if you know a Diabetic, a little insight.
1. Laugh. It's a tricky disease, and there are many little details that can run you ragged. The more you laugh, the easier it is. I'm still learning this because Diabetes is so very serious. I'm so thankful for my goofy kids and their beautiful outlook on life. They help me to smile and remind me if it's been a while since they have heard me laugh.
2. Be aware. I did not mean to type beware as we are not to be feared and avoided. I hope this isn't read as a warning- but more of a request for being present and observant. Diabetics are by nature of their circumstance distracted. There is always a device, or a needle, and medicine close by, and the need to be conscious of our numbers. It is likely that if you run into a Diabetic in or around the kitchen, or near mealtime, they are computing numbers (carb counting) in their head. Please understand they may not be ready for easy conversation-just yet. Think of a teenager struggling with math homework.
3. Learn. Diabetics have to explain a lot to a lot of people like new bosses, new friends, new loves. If you are lucky enough to be in a long-term relationship or have children, learn and teach them about the disease and try your best to understand how to help in times of low or high blood sugars. Knowledge is power, and incredibly comforting.
4. Check in. Just ask how things are going and listen. It is a true act of kindness to simply listen. I always say listening is an act of love.
5. Please don't judge. We have to eat every day just like everyone else. Let us eat and enjoy the food. If you are curious about our choices then ask and keep this in mind; a banana is like a piece of cake when it comes to carbs and insulin requirements. Weird, isn't it?
6. Encourage. Living a healthy life with a chronic disease is truly an accomplishment. Every day. I'm proud that I just wrote that because I am constantly frustrated with myself when my sugars are high. Only recently did a Diabetic Educator say to me "you are not a bad Diabetic." That was the language I chose to use for so long. But she reminded me that it is separate from who I am and it is something happening to my body. I have to react daily to what Diabetes is doing to me and I'm still standing, still walking, still living my life. Hooray for me!
7. Accept. It's not going away, we are carrying a deficient pancreas and we wish we weren't. We wish you did not have to deal with it too. But we do, and we are and we are doing our best to make each day meaningful and special, or if nothing else, normal.
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