I'm curious, diabetes can be isolating, especially for those of us that are single and don't have family around to help... What have people done for you that's made you feel the most encouraged and supported in the process?
I've always lived my D privately. That means besides my family just a bunch of people know about it. What I need from them is support without being oppressive. And I know that's a difficult role!
The most encouraging persons are the other D people out there fighting every day and achieving perfect results.
Being the example is the most encouraging move someone can do!
To be honest, I have two type 1 diabetics on either side of the family so family support is good. But more importantly:
I've been lucky enough to date two women in a row who have some diabetic sympathy/knowledge from their own experiences. One was a nursing major in college and now a nurse. She was pretty great. Currently seeing someone who has several relatives who have poorly controlled diabetes and well controlled diabetes, so she knows about the disease and what it takes to take care of it. It makes me feel good that she knows what it might take in the future to continue to see me...
It would scare the hell out of me if I was dating someone who had no idea what diabetes is like to live with and I wasn't sure if this person could put up with or accept what OUR life will be like in the future
My family and friends are supportive to the extent of their understanding, but that, of course is limited.
So what has made me feel supported best?
1. Discovering TuD back in 2009 when I was struggling to figure out what was wrong - why my so-called Type 2 Diabetes was acting like Type 1. And every post on here in the 4 years since.
2. When I started a Type 1 Women's Group and discovered the joy of connecting to women of all different ages, times of diagnosis and life stories who knew exactly what I was feeling when I laughed and when I cried. I now live 5 hours away from that group but it is going strong nearly 3 years later.
Diabetes is a chronic condition, we live our lives dealing with it. And we often make our internal diabetes world private, going about our days with everyone else, our jobs, our family and our friends as though our diabetes isn't there. But it is always there and it seems that only those who have diabetes understand. I find support through TuDiabetes as well as my local support group and friends who have diabetes.
I have never been private about my T1. I like to teach and do so about D. It pushes people away, surely, but has also brought knowledge and fantastic support from friends, coworkers... It has been important. Do not overlook education as support, please.
First, my mom, who has been gone a long time. She was a jewel.
Not single, but my husband rocks. He is calm, easy and watches out for me.
I treasure my friend who gives me vegetables and doesn't look cross-eyed at me when I eat 1/3 of a scone at coffee.
And my teen son who makes a green salad to go with our dinner & puts out my metformin.
These little gestures are lovely.
I see the challenge of diabetes management as breaking down into two major components: the day to day tactics and the emotional part. None of my friends or family understand the level of detail for daily management nor do I expect them to.
I do appreciate when they understand how much work I put into maintaining my health. When they get that this is a 24/7/365 long game. Simple things, like giving me some quiet time at a restaurant table while I do my diabetes math before I dose, make me feel supported.
Yeah the quiet math time! Really supporting, dunno how I forgot to mention!
i have found so much practical and moral support and hand holding on tuD and would say it has had the most significant impact on my diabetes care, much more than any people in my life.
i live quite far away from my family but have a very supportive group of friends who have gone out of their way from the very beginning to make it easier for me any way they can. i am very open about my diabetes, testing and injecting everywhere, but dont talk about the emotional stuff much to anyone, as i think its very difficult for them to really understand.
last night i was talking to my friend as we had a late night snack and she brought up D about how crap it must be about eating (i love(d) eating!). it was the first time id said out loud how i view food, the way i think about myself for (not) eating certain things. it was strange to hear it all come out of my mouth!
TuD is my major support group. I think just about every T2 I know disregards it or follows the wrong advice re. food and I seem to be the only one who is very careful about carbs and what else I eat. The emotional stuff is very hard as I live on my own and there are times when I simply do not want to eat what I can eat and crave what I should not eat. I have to be my own coach and support which sometimes works but mostly does not.
My best friend has, for years, recognized when I'm going low. I don't know how she does it, but in the past, when I had hypo unawareness, she would know I was low before I knew myself. And she would very gently say to me, "Ruth...do you need to test?"
Ruth
My healthcare team and specifically my nurse clinician. I feel really fortunate to have them. Because of them I feel empowered to manage my diabetes, and always supported. I can't say enough good things about them actually, my experience has been very positive.
One of my private worries is burdening my family, so I work really hard at keeping my outlook positive and taking care of myself. My husband is wonderfully understanding when I need him to be, but as I don't know anyone else with diabetes nobody I know 'really' understands what I go through.
Even my little girls are great. They have accepted my diabetes as part of their lives without complaint. They intuitively know that I need help picking the seal off a new bottle of dextabs when I'm low, or that my "zombie" look in their words means we need to pause so I can take care of my low, or that going somewhere requires a little preparation etc... that they aren't allowed to drink Mom's juciebox stash, that candy in my purse is for me...
So far, my family and my cats are my main sources of support. Without them, I certainly would not have been able to learn to manage all of this so well I'm sure. I don't know anyone in person who actually has diabetes too though and none of my family members have D, so they can't really understand of course how much work this is and all of the emotions and I do feel alone still in that regard. I now test etc. in public when needed and I talk to total strangers about my D at times, oddly enough this gives me some feeling of support. At first I felt I needed privacy and I just didn't want people to know I had D, I felt like an alien or something, lol. I don't tell my students about my D and I feel it would affect my teaching if I were to test/inject while actually teaching so I don't do that, but did tell a couple of them at the end of the last semester during their presentations when we talked on an individual basis. One it turned out was a nurse who had some idea about D. I was going to go to to a meet up for people with D but I ended up not going, it was too far away and my bg tends to spike a lot every time I drive longer distances. They were also going to eat higher carb meals than I do now at a restaurant and I wasn't sure if that would be a good idea for me, although of course I didn't have to do that. I would like to meet people in real life with D, but I guess we're all so different that I wonder if we can understand what each goes through? I know we can on some level of course. I plan to try to find a group at a nearby hospital- the hospital where I was mentioned they had a monthly group for people with D, but there is no way I'm ever going back there for anything.
I believe when you have to face an obstacle it's either you go for it or you give up. One thing for sure, if you are brave and approach it you enrich yourself.
Before joining TU I wanted to meet some groups near my area in which there were also some guys I got to know at camps many years ago. When I was trying to organise an aperitif I got really disappointed in the way they were handling everything. Just looking away. Sad thing is a few of them were responsible for upcoming camps.
Lately I had a really special dinner with the endo I got when was a teen. I expected him to be really traditional in his approach to D. But it comes out he has T2 now and showed really supporting in my keto approach! Also, he pointed out a few people of my age really active and smart that are working hard to help teens and children managing D in their free time.
What I learned is that there will be always people giving it up. Maybe the most. But if you are willing and look hard you are gonna find the ones who are going to jump that obstacle. And not only I respect greatly those kind of people, they are incredibly inspiring.
I say my friends and family are the most supportive people of my T1D. My older brother also has T1D, so if I need someone close and personal to vent to, he's the one. My parents are very understanding and support me %110 in my triumphs and tribulations.
I'm pretty open about my diabetes, and the emotional strain doesn't hit me very often. When it does though, I do end up bottling it up, but eventually it simmers away. (When I was younger, and I had these frustrations, I would beat up my "Beat Up Buddy"-A giant soccer ball pillow that I bought after my diagnosis whom I was allowed to punch, kick, and release any physical frustrations I had.)
My best friends all understand my diabetes and would be willing, if ever needed, to help and listen (such as when I was younger and would complain about an upcoming Endo appointment or share in the results of a good number at the lunch table during my school days).
Along with them are those other diabetics I've met along the way, most whom I keep up with on Facebook, or other discussion forums. I have also met some great people being a part of Students With Diabetes.
My friends at diabetes camp have always been my support group.
I feel very isolated and alone with diabetes and I feel a lack of support system, this is why I find myself back on this forum, it's been awhile since I first joined. I'm reviewing the last 31 yrs of living with T1, and I feel sort of shock that I have T1, maybe shock that I still have T1, because I thought for sure I'd be cured by now, but I haven't. My Medtronic pump plugged up with blood today, my bg went to 356, I drank some kombucha, changed my site, had lunch at co-op, some brown rice and stemmed veggies, went for a walk, did some laundry, hours later I was at 36, and drank some oj, and inbetween, above and below that... I just went through my day, Day # 11,316 of having diabetes T1. My fondest memory, that made me feel the most supported and encouraged? My adopted mom once folded little tiny squares of tp and put them in my blood checker with a note that said, "kisses to your finger tips".
I am a mom of a type on edaughter and no we do not have any support from my side of the family and very little from his. The most support I get is from my t1 daughter who is AMAZING and is very open about her disease. She has her moments don't get me wrong but the strength she has inspires me every day. My hats off to all of you YOU ARE ALL MY HEROS!!!!!!!
I am only 8 months in to my Type 1 diagnosis. My friends and family are still learning just like I am. The most surprising place I have found support is in my work life. Due to the nature of my job I expected the men I work with to be hestitant to work with me anymore. I too was worried that I would be a burden to my team. There are still a couple who believe that I should not be able to do what we do but overall no one seems to mind. In the beginning they asked questions about the new lifestyle and what their roll would be if something happened. Since that intial phase they all kind of ignore the fact that I am always testing/injecting. I trust them completely to know what do if something happens. I guess that is the kind of support I wanted from them; just to continue with business as usual.