I love what you have written here; thank you for sharing. I think it’s important to share these types of posts. Living with diabetes is a journey, and our thoughts, feelings, and experiences with it change over time.
I definitely think that T1D has influenced my personality. Absolutely. So have so many other things I’ve lived with for my remembered life: being legally blind, having severe food allergies, being Canadian, having a loving family, being introverted, all my interests and hobbies. I would be a different person if any one of these factors had been different, since they have all combined with all my other life experiences to make me who I am today. I don’t think that’s a bad thing.
I’ve never been that private about my diabetes. I’m not open and loud about it, but that’s because I’m not open and loud about anything (at least not in person). I do what I need to do without hiding it, and answer questions if people ask. I’m defined more by my visual impairment, for sure, than I am by any of my other health issues. But that’s mostly because that’s the most visible thing about me, and it’s something strangers see right away, and it’s something that people have very deep-seated, and at times very negative, stereotypes about, even more so than diabetes. At one point in my life I was doing a degree focused on visual impairment, volunteering for several organizations related to it, as well as living it in my daily life. At that point I had to back off, because I felt like it was becoming all-consuming. And at times, even now, I worry that (at least at the moment) most of my life is dedicated to managing chronic health issues, and I worry that it starts to overtake my identity. I’d like to get back to a place where I’m crushing unrelated goals rather than just getting through the day. But that’s just a place in my life where I am right now that will hopefully change as time goes on.
I’ve given up on having anyone else truly understand what I go through. Unless you live it, there’s just no way you will truly understand, regardless of how much I describe things and how closely you listen. That used to really, really bother me when I was younger. But now I’ve decided that the best and most healthy thing I can do is just accept that no one will truly understand the daily struggles outside of communities such as this one. So I reach out to communities such as this one when I need to, and I read them almost daily even when not reaching out. I do work hard at advocating to help others understand issues that really matter to me in areas where their actions or comments directly impact my life; that in itself can be a big, drawn-out process even to just understand and accept a tiny fraction of my needs.
As a late entrant to this topic that is easily one of the most interesting and real topics i have read at FUD to date, I have often felt this way. In some ways Diabetes has started to define me, and in others liberate me. I am much more focused on how Diabetes affects everything in my life and how my glucose control affects all my interpersonal relationships. It scares me to some degree how all consuming it is, yet I don’t want to be defined amongst those I know and those I meet as the Diabetes guy. I have recently started to adopt an indifference to those who object to the realities of Diabetes. The problem is theirs, not mine. I help those that are interested to learn and gain understanding where possible, but in the end if you have an issue with me injecting myself or wearing a CGM, or… it’s your problem. While somewhat callous, it’s also been liberating and not an attitude that I have been able to universally apply (and I am not sure that I want to) in my life.
As a side discussion, there are people in my life, family members included that I choose to not discuss and Diabetes related subject with. Period. This is strictly a sanity saving coping device mechanism. Not proud of it, but it works for me.
My spouse is my therapist. She is single handedly the most expensive therapist on the planet, and yet the best support system I could have ever wished for in my life. I express my issues, and the advice is often a left turn to the subject at hand - the woman sees right through all the bs, minutia, emotion, my character flaws and drills me with it. Sometimes it’s painful, sometimes liberating, and always helpful. After her I am ready for the world (maybe)
@Katers87, thank you for this. Your 1st paragraph really captures how I see it as so overwhelming. And that’s just the tip of the iceberg, not even considering all the psychological and emotional aspects of it.
I also like that you communicate different ideas about diabetes to the different people you interact with. I think that this is along the lines of what I’d like to do. I would love for everyone around me to totally get it and be enthralled with diabetes and its management… but totally not necessary and I don’t think my feeble heart can handle that .
You’re making me realize different people can be a different support for me. Or not even support, maybe some are just an outlet. And some don’t need to hear about it at all. I don’t know if any one person could hear about it all (or bear to) and I don’t think that would be healthy for me, them, or our relationship. Because then we’d just be talking about diabetes 24/7… as fun as that sounds.
Also, @glitzabetes and @Michel I like the idea of a T1d therapist to be the kind of outside party. Also I acknowledge I have some unresolved things I probably should get to working on
Thanks for sharing and starting this thread, @LarissaW.
I am presently on a ship in the Bamu River, helping a medical outreach to the people around here. I’m so glad to be here, yet… Yesterday I went to the village and couldn’t shake a low - and ended up coming back to the ship after only about an hour. The low was followed by some roller coasting, leading me to stay behind today. I’m mostly okay - but still rolling (blood sugars) a bit unpredictably. So I feel like a lazy bum who isn’t doing her part. There’s a few people who understand, which helps, including my husband, for which I’m thankful. I also have a lot of sympathy, but I don’t want sympathy - just support and understanding.
Hi Larissa, your name is very familiar. We may be Facebook friends. I like your story, I understand your situation, and I identify with parts of your journey.
I was diagnosed in 1945, when I was 6. I did not know another diabetic for the next 60 years. I joined online support groups, and finally knew hundreds of other T1D’s.
I do not remember my life without diabetes, so I feel that this is my ‘normal’ state of being, and I am satisfied, healthy and happy with it. If I had bad diabetes complications, I’m sure my feeling would be very different.
If you ever attend the Friends For Life T1 conference in Orlando you will be amazed at hundreds of other T1D’s of all ages there. I plan to be there in July. This will be my third time attending the conference. I hope you will plan to attend some year, soon.
I’m sorry I missed this thread, but I guess its not too late after reading everyone’s well-expressed thoughts.
One thing I didnt see, however, is that coming to terms with diabetes has made me much healthier than I would have been without it. It has opened up the opportunity I have to love and take care of myself, not in a selfish way, but in a way that makes me more valuable to others.
Diabetes has certainly not defined me. But I can easily see that it has made me a better custodian of my body.
And one thing it has left me with is the knowledge that if someone looks at me differently because of diabetes, that it is their problem and not mine.
@Richard157 I think we may be both a part of Nicky’s facebook group?? It sure is a small [online diabetic] world
Thank you for your story! Joining online diabetic communities has really changed the way I see my diabetes, and it sure has made me feel less lonely about it all.
I looked it up, and this years may overlap with family vacation… but if not then I’m seriously considering going. I’ll be going to a JDRF summit in March though !!!
Really love you post Larissa! I think you describe being a diabetic the way I would but I am not very well written! 3 months ago I started on the Medtronic 670G, it replaced my first pump which was almost 9 years old! This is also my first time with a sensor which is a love/hate relationship! I really appreciate what you wrote…thank you so much!!
Hi Doc. Like you I have been a T1D for many years, now going on 45. Since becoming a part of the diabetic community I have learned a lot. A very good book is the one written by Dr. Richard Bernstein. He has had T1D for more than 60 years. His story is very interesting. I also must give credit to the xDrip community. Like you I use the Sony SW3 for a constant monitor of my CGM. I must use this device since I am a dedicated long distance runner. There is just no reason a T1D has to give in to the problems of diabetes. I feel very good keeping my A1C below 6. I usually run about 5.3 with absolutely not problem with a low. In fact I must bring a family member to my meetings with my endo. Doctor to verify no hypoglycemic incidents. Most doctors must deal with the T1D people that do the absolute minumun to stay below an A1C below 7. Read Dr. Bernstein’s book about what he suggests, minimum insulin but multiple daily injections. He also wants is absolutely minimum carbs.
Hey @dmac, we have had many a discussion about all of the eating approaches, Dr. Bernstein’s included. It seems that in our highly unofficial sample, the biggest group eats around 100-130 carbs a day, while a minority eat either Dr. Bernstein, or no carb limitation at all.
No carbs would be almost impossible. I have picked up many ideas from Dr. Bernstein but have greatly modified his diet to at least include tomatoes, ha. With the Smart Watch and xDrip+ I have greatly improved my lows and highs especially with the projections. I use a smart phone to perform calibrations for the watch when necessary. Of course my cardio routines with the running helps a lot. I am sure I am in much better shape being a T1D than if not being a diabetic. While in the Air Force I was made aware of Dr. Cooper the aerobics doctor. I guess I adopted many of his ideas.
Also most of the people I meet know I am a T1 diabetic. I feel good that they know this fact. I feel no resistance for them knowing this fact. This is especially true when I compete in a 5K run.
Feel free to share your pre and post running routines in the sports category! I know my son is struggling with his and would love to read more on this.
@T1Allison you are in “good” company. Good as in the group as a whole, not because of my presence. Though I too have worked my butt off to waffle on the 6.9 to 7.1 line for the last year
You are a fighter and one beating its opponent, T1D. T1D hasn’t got a chance against you. I plan to use your post in the future to inspire me and help me. Thanks for posting, it has been immensely helpful to me and I am certain to others as well. T1D is tough but manageable and you are clearly doing all you can. GREAT reading your post!!!
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Think I needed a reminder.
