A question for the Diabetes (Type 1) Community

Who are your biggest supporters specifically when it comes to your or your loved one’s condition? For example, your doctor, friends, family, or someone else? And what are some examples of how they have supported you through this journey?

Answers from the Community

My mother who is now 94 has always been there to help me, pray for me, care for me. My sister also has diabetes so my mom got quite a share of her workout with the two of us. My husband is supportive. He helps me out. He understands. And other than that, I don’t have that many people that I really, rely on. I have a best friend who has Type 2 and her mom has Type 2 and they don’t quite understand. They don’t even understand quite how to take care of themselves. So, other than my mother and my husband, I really don’t have anyone else that I much lean on or worry about, but they’re always there for me. And we have a 36 year marriage and that was just this week, so we’re doing good and we don’t worry about it much. I don’t have any problem with him understanding, or my mom understanding me.

My family is my biggest supporters, which includes my husband and my adult son and daughter. My husband is very helpful with the technology, picking out the things, also. He knows how to use the devices I use. So, he’s always there to help out, help if needed. There’s been many of nights when he has helped when blood sugar dropped too low. My son and daughter are also aware of the signs and symptoms to look for, know what to do, and are always ready to step up and help out when needed.

When I was diagnosed, my parents, especially my mom, were my biggest advocates and supporters. They pushed me to do the best I can, but knew there’d be growing pains. They worked too hard on me, but didn’t let me forget. They somehow magically knew the fine line to walk to keep me from getting too far off the bandwagon, but also from being too strict. But I just got burnt out. They were really good about it. My fiance now is a huge supporter of me, putting up with nights with low sugars or high sugars, having to take time to change my insulin pump or take time out of my day. She is always understanding, always willing to cook food that meets whatever diet I need, and just full of love for me, all parts of me, not just one part.

The friends that I’ve made through this illness, parents of kids who also have this. We’re always around 24/7 if someone needs help. We’re there to share supplies and then advice and laughter during the good times and crying and the shoulder during the sad times.

So my biggest supporter’s only doctor and then my family, especially my wife. She makes sure that I’ve got everything I need and makes sure that I’m doing what I’m supposed to and just trying to stay healthy and keep my blood sugars are where they need to be. And making sure that I take one medicine I need to.

My biggest supporters are my mother and my spouse and my new endocrinologist. An example of how I was supported would be from my mom. During my pregnancy, she would actually set up alarm, wake up 1:00, 1:30 in the morning, whatever the designated time was, and call me so I could do a blood test and validate that my blood sugar was not dropping, and that I was going to lose consciousnesses, as that had happened several times during my first pregnancy when I did not have an insulin pump. She also drove me back and forth to doctor’s appointments, as I didn’t have … My doctor recommended that I don’t drive due to my inability to recognize the onset of low blood sugar and continuously losing consciousness.

My biggest supporters are my health team at Kaiser and my aunt and my daughter. My health team at Kaiser actually evaluates my health thoroughly on a basis that’s ongoing. They have check-ins and they are synced with my glucometer. So if they see a trend for things high or low, they can contact me. And my doctor checks in on me periodically. Also, too, I feel like they really listen in terms of things that work and don’t work for you specifically. We’ve tried a couple different type of diets that are supposed to be helpful. And some work. And we found one that really does work the best. And so that’s been helpful. And my aunt is my biggest supporter because she’s just that type of person. She’s very kind, has a very sweet impediment about her. She was a school teacher for 25, 30 years, taught second grade. So she’s always my biggest encourager to do the things that I need to do to take care of myself. And then I have a 15-year-old daughter and she is an encouragement to me as well in a roundabout way because teenagers are hard. But the fact that I want to be around for her to be here for a long time is very much an encouragement.

I have some great friends who I talk to about diabetes all the time, who give me ideas, support, and encourage me, especially on the bad days, or the bad moments, just to keep going, “It’s going to be okay. Hey, you’re not going to die. It’s fine.” I also have an amazing doctor, like I mentioned previously. An example of how she’s supported me through the journey is when I first started going to her, I basically was like, “I’m scared of insulin. I don’t want to do this”, and she was like, “Okay, here’s the plan. We’re going to start you on a super, super low dose, see how you do, and build up over time.” She gave me your phone number, and she even said, “At any point, if you’re not comfortable with how I’m increasing this, you need to tell me, and we will back off because none of this is going to work if you’re not comfortable, and if you don’t trust me.”

My husband is definitely the biggest supporter of my condition. He’s read books for me, for example. What’s it called? Bright Spots & Landmines, I think, is the name of the book about how to manage diabetes. I read it, but he read it too, and he actually bought it and he’s just very understanding. I feel like some people talk about family members who don’t understand the disease and tell them like, “Oh, you shouldn’t eat this” or “You shouldn’t eat that.” I never feel that way. He’s just very supportive and he’s like, “What can I do to help?” And seems to understand where I’m coming from and what I’m going through and whenever I kind of beat myself up, he’s not there to beat me up too. He just tells me that I need to cut myself some slack, which is really appreciated. I guess my dad would be somewhat of a supporter, but I feel like he’s very much more like, “Hey, you need to do this and you need to do that” and doesn’t fully understand how time consuming the disease is and that I can’t make myself a science experiment every day. That’s exhausting. My sister is supportive, but we don’t really talk about it. I think my friend, is probably the most supportive. She asks a lot, “How are you doing? How are things going? Is anything new?” and seems genuinely interested in development. I have another friend who also seems interested and supportive, but at the same time, I feel like she gets fatigued when I talk about diabetes and seems to get almost annoyed if I bring it up in a group setting when I’m having trouble. It makes me feel shitty or embarrassed for having brought up my disease in front of other people because of how she reacts sometimes, but I would never feel that way with my other friends. If I brought it up, she’d be totally cool if she would never make a face when I’m talking about it. I guess, in summary, it’s really my husband and my friend, who are the most supportive.

My doctor and my caretakers. My caretakers don’t eat things that I’m not allowed to have around me to keep away the temptation.

At first, when my daughter was first diagnosed, it was her endocrinologist who was our biggest supporter. I used to call her up a day and night and she would be there for me and telling me what to do and guiding me on dosing and figuring out carb counts and things like that. So in the beginning, it really was an endocrinologist. And then once I got online and into the diabetic online community, they became my greatest resource. I found people who wrote books about Type 1 diabetes and had been diabetics for 50 years. And I found a guy who was close by in the city of Philadelphia who ran a whole support group. So it turned out to be just a giant community of people with diabetes, supporting me after that. And how they’ve supported me is showing me that they live beautiful lives. They live long lives. They take care of themselves, and they’ve shown my daughter that she’s not alone. That she has a community around her, that people of all ages are diagnosed with diabetes and she is truly a part of the community.

My biggest supporter, I would say, is my fiance since he’s been with me since my first diagnosis. He is very supportive of a healthy lifestyle. So, if I cook a healthy dinner, he eats what I eat, and he doesn’t make a big deal out of it. So, I don’t really have to make … Sometimes, I do make separate meals, so he can kind of live a normal lifestyle, too. I’ll make whatever he wants, but even if I make a keto meal, he’ll eat it without complaints. And he’s not an enabler. So, I don’t have to worry about him forcing me to eat this and that, or he just doesn’t pressure me at all. So, he’s also very knowledgeable in the subject now as well because we learned together about diabetes when I was diagnosed.

My fiancee, I would say, is my biggest supporter throughout this journey. She’s known me almost the whole time since I’ve been diagnosed. About a year after I got diagnosed is when we met. And she’s always there for me in terms of helping, whether it’s with thinking about where my blood sugar levels are at, providing snacks or cooking, things like that. And also having access to my continuous glucose monitor readings so that if she notices something that might be off, or if I haven’t tested my blood in a while, she’s a good person to kind of have as sort of someone to feel like you’re not in it on your own. Also, my doctor and pharmacist, when I first got diagnosed, they taught me pretty much everything that I know about managing the condition and worked with me pretty intensely over the first few weeks and a couple years or so that I got diagnosed, and they were a huge help.

My biggest supporters, I would say number one is my family. Everybody has been super supportive and understanding and willing to do whatever, whenever and just listen and be there for me. And that has made it so much easier. I took a big step in my life and put my family, both my parents and the sister that I live closest to on my CGM. My Dexcom share. So if there were to be an emergency, they would be aware and be able to call and contact me, and just allowing them to see that. And them being respectful of the boundaries of having that access to my health has been huge. And they’ve been a big support in many ways. Another … Someone else who was a really big supporter in the beginning of all of this, when I was first diagnosed in college, I had two people in my life that were both diabetics. One a type one, and then also another type two. And throughout my life I’ve met so many other diabetics, and I called them my diabuddies. And those people are such big supporters because they’re the people I can turn to when I don’t know how to explain what I’m feeling, and they just know. So when it comes to the mental and emotional side of things, they support me in that way. And it makes a world of difference being able to talk to somebody that just understands. So if you don’t have a diabuddy out there, I highly recommend it. It makes a world of difference to have people on your side that understand.

My biggest supporters are my doctor and my husband. As far as my doctor, I do have to see my doctor every three months. But in between those appointments, I can still message her on the portal, and I do to ask her to look at my numbers. I use the software with my pump to upload the information. And then she can look at it, and then get back to me and tell me how I can adjust my basal rates or my insulin-to-carb ratio, and to fine tune it so that I am in the best control that I can be in. As far as my husband, I wear a continuous glucose monitoring system. And the sensor, I usually put the sensor in my arm. I find that’s the best spot for accuracy. However, it’s hard to reach. So my husband is the one who inserts my sensor every week and that’s very supportive.

My biggest supporter is my husband. And second would be my family and then my doctors, my son. How do they help me is they know if I’m going low and then they tell me to eat, sometimes before the machines tell me or alert me to go ahead and eat. They know what’s going on and it helps keep me alive. They know things that I can’t do, my husband, especially. So he goes ahead and picks up what I can’t do and supports me in what I can do.

My biggest support is myself. I take care of it. It’s my problem. Although my family needs to be a little understanding when I get a little bitchy when I go low.