FUDiabetes

Diabetes & Identity


#1

I figured I’d share my post on facebook from Nov’18 because I think some FUD’ers would understand/appreciate the sentiments. The idea of balancing my own identity and that of being a T1D is something that I’m continuing to work on (and may always be working on). I’d love to hear how you all relate to your diabetes and perceive how it plays a role in your identity (if it does)!

Today marks the start of National Diabetes Awareness Month. I’m working on being more open about being a Type 1 Diabetic, so here’s a little of my story.

I was diagnosed with T1D when I was 6 years old, and I’m not going to lie, it has been the most lonely journey of my life.

What you need to know about T1D is that it is an autoimmune disease in which my body attacked itself, killing my pancreatic cells which make insulin. Without insulin, the amount of glucose in my blood rises putting me at risk for complications including diabetic ketoacidosis (a life-threatening condition that causes many organs to shut down), coma, eye, heart, kidney, and nerve damage, pregnancy complications and a higher risk of amputation. :face_with_head_bandage:These are just some of the things I have to keep in mind on a daily basis :hugs:

To keep my blood sugars in range, I am a human pin cushion because I prick myself with a needle more than 5 times a day. :syringe:I am part robot because I always have my insulin pump connected to me, delivering synthetic insulin (pictured clipped to my shirt, inserted in my stomach and wirelessly monitoring my blood glucose via the sensor on my arm). And it’s all a balancing game because if my blood sugar gets too low I can blackout and have a seizure. So ya, you could say it’s complicated and stressful in itself to try to keep my blood sugar in range. :sweat_smile:

Though having my diabetes in check is absolutely essential to my survival, I was (/am working on not being) so fixated on the idea of not being defined by my disease and its management.

This disease, this chronic condition that is there with me every second of every day, that continues to physically, mentally, and emotionally hurt me - has been buried and buried and hidden away because I didn’t want others to see me as this disease. I’ve been so scared of not having my own identity that I’ve internalized so much of the trauma that I go through on a DAILY BASIS. It really sucks dealing with the spikes and crashes of blood sugar. Especially when you just want to give up and take a break from it (diabetes never takes breaks!!) But I would say that the underlying isolation I’ve created for myself has also been relentlessly damaging.

“The hard part [about living with T1D] was being a sophomore in college with years of living with diabetes under my belt and feeling so overwhelmed and defeated and alone” - Kim Vlasnik, T1D blogger

I won’t try to make you understand how difficult it is living with T1D, but I think we can all understand that internalizing our problems makes them that much heavier. And it’s taken me 16 years since being diagnosed to really try to come to terms with this.

“Maybe Diabetes is a part of my identity that I have to live with. But what I have done with it, and the way I have not let it hold me back these past years, is something I have become extremely proud of. Diabetes is not my identity; being someone who is kicking its butt is” - Sierra Sandison, Miss Idaho 2014

This post was a way for me to acknowledge that I’ve missed out on so many opportunities of growth and healing when I could have opened up more about my disease with strangers, acquaintances, family and friends alike. I hope that this can start the dialogue that I’ve been running from. I hope this can be a sort of beginning of acceptance of my disease.

I am a Type 1 Diabetic; I am my badass self and it’s thanks to my Type 1 Diabetes and I’m ok with you seeing that now.


#2

This is beautifully written and, as sad as it sounds, it looks like you’re in a different place now. I hope to get Liam in this stage that you wrote about, in opening up to strangers, acqaintances, family, friends, and educate people, while still being “unlimited”:

Communities like this help create beautiful butterflies that were once hidden inside a cocoon. It’s the collective “lifting up” of people in groups like these that not only help us understand we are not alone in this journey, but also understand that this disease does not have to define you if you choose for it not too. Diabetes is just like any other disease…you will get out of it what you put into it. I want Liam to NOT wallow in his misery. I want him NOT to lament and feel isolated. I want him to NOT feel defined by Diabetes. But to get there, it takes a different mindset and just not being afraid to live. We’re going to hopefully instill the values into him that are going to make him be and do whatever he wants regardless of this disease.

I loved reading what you wrote and it really puts into perspective the isolation that Diabetes can bring with it. It’s tough when people just don’t understand…even when you explain things to them they still don’t understand. But all we can do is try and remove 1 brick from the wall every day, during every interaction.

Thanks so much for sharing this.


#3

Definitely relatable :slightly_smiling_face:

I tend to think less about separating my personal identity from an identity as someone with T1D, and more about how T1D has influenced my personal identity, if that makes sense? There is no way to really think about who I would be if I had never gotten T1, because simply put, all of my memories and all of my formative years are from when I was already diabetic.

I had to really think about this recently when I was applying for the JDRF College Internship Program actually, because they had a question on the application that went something like “How has diabetes impacted you”

Well… it’s made me strong, resilient, and empathetic. It’s taught me persistence, problem solving skills, and humility. When I was young I learned certain math concepts (addition, multiplication, decimals, ratios…) well before my peers, and as an adult it has instilled in me a fascination with biology. The career path I am pursuing is very obviously influenced by T1D (really, I even have my sights set on diabetes research) and I am not afraid to say it. T1D has absolutely influenced my personality, my goals, and my life, but for me I think much of that influence has been positive.

Of course certain aspects have not been positive, whether it be the loneliness or depression, burnout or those other issues I’ll only write about in the Lounge. But at the end of the day, I feel that dealing with and overcoming many of these negative aspects of the disease have helped me, in some weird way.

Thank you very much for sharing your post, definitely is food for thought. I am glad you are here and willing to talk about the often very complicated relationship we all have with diabetes


#4

I think so! Like you were saying, D communities have helped me SO much feel less alone. However, I’m still dealing with slight anxiety when it comes to talking about D with others in person. It probably sounds silly. I WANT to talk about it, and I’ve been going out of my way to start the conversations with friends, family, and coworkers. But I clam up, get sweaty, stumble over my words. It feels like public speaking even if it’s just a one-on-one conversation… SO, having these only groups have been a great way for me to open up about D in a way that is productive for me and I still feel comfortable. I’m hoping to get over those anxieties of talking about it with others in person.

It already sounds like Liam will have tons of opportunities to express himself with other diabetics and his parents. And it sounds like you very consciously are not putting the emotional and psychological parts of the disease to the backseat. Which is totally awesome and I commend you for it !!


#5

I know everyone is different, but I think in Liam I will want to get him to that sweet spot where is IS NOT AFRAID to talk about Diabetes IF it comes up…but I don’t know that I’ll be wanting him (or encouraging him, rather) to go out and speak with everyone about it. I just want him to a) be comfortable and intelligent enough about diabetes to EDUCATE people if the time comes and they’re interested and b) live a wholesome, full life and be as successful and happy as he chooses to be.

Having said that, though, if he grows up and wants to be a “diabetes danica”, then go for it!!! I say more power to him!

The fact is: He OWNS diabetes, as everyone here does. There is no changing that no matter how badly you want it. So, once that’s accepted, then comes the part of “how do I deal with this ownership?” It’s like anything else in my mind…you can choose lots of paths, but only specific ones lead to happiness, fulfillment, and being unlimited in spite of diabetes. It’s definitely too easy to fall into a slump ABOUT ANYTHING in life that’s negative…it’s a lot more work to remain positive, upbeat and constantly trying to improve and find new and innovative ways to “be happy”


#6

Well THAT is a loaded question haha.

I completely agree. I have no idea who I would be if I never had diabetes. It has definitely changed me so much and for the better. If I had the option I wouldn’t go back and live out my life without diabetes because I like all it’s made me to be. Which is a weird concept to me that I prefer having a disease.

:clap::clap::clap::clap::clap:


#7

To add to this, I actually think your reaction is reasonable. I am an unabashed Diabetes fountain of knowledge with others, to the point that my wife told me to zip the pie-hole. I now do a test before turning on the fountain, I mention that my son has diabetes and 8/10 people never follow up that comment with any interest in the topic. So it is not hard to understand that talking to others is hard, when most of them don’t care at all.


#8

This is beautifully written also. This thread, I know I’ll be pointing Liam too when he’s old enough that he begins feeling these things.


#9

Very well said. Since sort of coming to terms with my diabetes, I’ve been trying to navigate which path(s) I want to go down. Kinda like diabetes itself I think for me it’s going to be trial and error until I hit the sweet spot of actually feeling comfortable


#10

I love that statement. That is fantastic. My husband commented to me the other day that he’s noticed I don’t care anymore if my pods are lower on my arm and visible to the world. I forgot that that even used to bother me. It clearly doesn’t anymore!

I get this. And I’m going to fully admit that feeling while also living Unlimited. And what it makes me think of in terms of validation of your feelings (and mine), is this passage from a book on the academic history of the bible written by Episcopalian Bishop John Shelby Spong. He explains when and why the Kosher dietary laws were constructed. Basically, when the Jewish people were in exile in Babylon, the Jewish priests constructed the Kosher dietary laws as a way to keep the Jewish people together and avoid intermarrying with the Babylonians to keep their bloodlines intact. Here’s the relevant portion of the chapter discussing why dietary laws could help prevent intermarrying:

“The only hope a conquered people had for survival lay in their ability to remain separate and distinct from their neighbors, thus making it impossible for amalgamation to occur. These southern Jews, now exiled in the city of Babylon, had as their driving passion the ultimate hope that someday, in some unknown future, either they or their descendants, if still cohesive and recognized as Jews, might have a new opportunity to return to their homeland and rebuild their nation and their holy city of Jerusalem.

In the service of this hope these priestly leaders identified three essential marks of Judaism, which they set out to stamp so deeply on the psyches of their people that these marks would serve to keep them separate from the others in Babylonia:

Second, these priestly leaders urged upon their
people the adoption of kosher dietary laws, mandating that the food that the captive people ate had to be not only kosher, but also prepared in kosher kitchens. This meant, effectively, that all social discourse with those who were not Jews was cut off. Since Jews could not eat with non-Jews, there was little chance that close relationships with Babylonians could ever grow, since it is a fact that most human relationships develop through the act of eating together.

Spong, John Shelby. Re-Claiming the Bible for a Non-Religious World (p. 53-55). Harper Collins, Inc… Kindle Edition.

When I read this it made me think of T1D. Are there ways we can still socialize and intermingle and have close relationships without T1D stopping us? Of course. But for me, it can still require planning, prioritizing, communicating, etc. I lived for 21 years without this disease, so I have a clear “before” and a clear “after” for how it has affected my socializing, my life choices, my relationships. It doesn’t have to be a “bad” effect, but there are new things there that weren’t there before.

All of that is to say I want to validate your feelings. It is a journey. You know that better than I do…you’ve lived on this street longer. But I’m so excited you’re here and talking about it and comparing notes and inspiring me. But it is also okay to acknowledge that it can be lonely and it can be hard. Being Okay with T1D, for me, means also being honest with myself about which parts of it I do not love. And that’s okay. But it doesn’t define me, even if it seems to define me to some of my acquaintances. That part is their decision in their mind, not mine.

My decision in my mind is as clear as day. I’m a bad ass just like you.


#11

Somewhere along the way I realized that talking about being diabetic was a lot like coming out as gay. We feel isolated and alone; then we meet a few other gay people; then after we come out we want to talk about it or maybe just casually mention it but we’re nervous about doing so, fearing the reaction. You don’t really come out just once; instead, every new social interaction is a potential coming-out, and depending how I think you’ll react, I might call my partner “my husband” or I might chicken out and call him “my friend.” (No, he is not my brother, but thank you for noticing that we’re often together.)

Talking about being diabetic has always been easy for me – it’s all I’ve known and I’ve never in my life felt any reason to hide it – but each time it comes up with a new person, it’s almost like coming out again – I gauge what to say and how detailed to get based on the reaction I anticipate. With being gay, some people just don’t want to go there, while others wish to discuss it in a sensible way. With diabetes it’s often something like “But I’ve seen you eat desserts!” and I mentally roll my eyes and think “Oh dear, here we go again.” There’s a time and place for Public Education, and the condo picnic isn’t it.


#12

Not to derail this awesome thread, but I feel like this sentence is so useful in so many situations. It may become my new go-to statement for hitting pause on conversations!


#13

@Beacher I really love the way you put it. And that’s how I’ve been feeling talking about it

Along those lines - I was thinking, “why am I so nervous to talk to my [boyfriend or mom or dad] about diabetes”? These are people I love being around and I feel comfortable with. But I guess it’s partly fear for showing my (diabetic worries, frustrations, goals, scars - all apply) - all of which they can try to understand and be supportive (and they do and I love them for that) but will never really get it. And there I see parallels similarly with the continuous feeling of coming out and trying to explain myself and explain all these things going on inside me that I think about all the time


#14

The only thing I would recommend here is…if you know one of your loved ones “REALLY REALLY” wants to get it…then make that happen! There can never be enough people in our lives to look out for us. Whenever someone truly wants to learn and understand, take every opportunity you can to fill their empty vessels.

I don’t know if I’ll ever really get it since I’m not diabetic (I mean REALLY get it…like those of you who feel it, who live it, who eat and breath it, those of you who’s lives are in the balance for the decisions that you make). But I love my children and I’d die for them and I really want to learn, understand and learn how to empathize and help whenever I can.

So, really, in my mind at least, I’m more like one of your loved ones who just want to understand and do my part to help as much as I can, but I will never really get it from the perspective of the actual life and death threat for my own body…if that makes sense.


#15

@T1Allison THANK YOU for that passage and your response. I really am a fan of using art, literature, and music to work through feelings on the world around me (namely: diabetes).

I love this. We have the self-image, the world’s image of ourselves, and the way we see the world’ image of ourselves; and sometimes I get them (and what should be the priority) all jumbled. I’m stepping in the direction of reprioritizing how I see myself and my diabetes, with the hopes that the other two perspectives will follow along


#16

@ClaudnDaye that TOTALLY makes sense and I completely understand where you (and my loved ones) are coming from… which somehow I think makes it even harder for me. The ball is definitely in my court on when to act and talk. It’s on me for sure for creating this isolation for myself. [EDIT]: and I don’t feel the need to say faults here or there, but I know that at this point the change has to be coming from me

And it sucks because I do want to open up and talk more about it and make them understand it all and get how I feel about it …I just don’t even know where to start and I feel like it’ll just be an overflow of all the thoughts that go on in my head on managing it every day - like a giant word vomit. I guess I’m just worried it’ll be too much. I know the easy answer is of course they care enough that it won’t be too much! But I feel…overwhelmed… at the idea of unleashing (not sure if that’s the word I want) all of it on them after 16 years


#17

To quote Do Re Mi lyrics, I think you should “Start from the very beginning, it’s a very good place to start.” Express how you feel. Express why you don’t talk to them and let them get involved. Express your fears FOR THEM from you opening up. Express the isolation you’ve felt. The very feelings you’ve succinctly identified here as to why you haven’t talked to them yet are THE best points to begin with, imo.

Then just go from there…

Make notes on paper to help guide you through the process if necessary.


#18

Have you ever considered talking to a therapist about your diabetes related feelings? I mention it because sometimes talking through something or explaining my feelings about something to my therapist can kind of serve as a practice round before getting into a discussion about it with my loved ones, and then they can help me process those feelings. Most of them aren’t super experienced with T1 so you do have to do the whole background info filling in process but, after they’re up to speed it can be a good way to unleash 16+ years worth of feelings and get validation on them.

Of course, talking to your loved ones about it is also great, and will help them understand what you’ve been feeling, but if that feels too scary and overwhelming to do right now then perhaps you could try a practice round before the real deal :slightly_smiling_face:


#19

There are therapists with a strong background in T1s, who are associated with diabetes clinics.


#20

I can find it overwhelming to explain something as complex as diabetes to others. There are so many aspects to each decision we make when we’re managing our diabetes. It’s not so simple as “For every 15 carbohydrates, I take 1 unit of insulin” because really, we’re looking at what our bg value is now and what usually happens around this time of day and whether we’ll be active in the next couple of hours and whether we’ll experience stress and whether we can fix a low/high bg 2 hours from now and and and…

It’s taken me a long time to find a balance where I explain what I’m comfortable with explaining in each situation. I don’t explain much of anything to friends. I find that it generally doesn’t help anybody, and they’re not truly going to understand anyway. If they ask, then I explain what it is most relevant at that moment in time, but I try to keep my answers as simple as I can. I’ve discussed a bit more with close friends, but I try to keep it an occasional conversation. There are lots of other wonderful things to talk about with them :slight_smile:

Slowly, I’ve been explaining to my boyfriend some of the mechanics of diabetes. He’s asked me about what he can do if I had a bad low, and I explained how the glucagon shot works. I’ve told him the way I might act if I’m low or high. I’ve explained the action times of the different insulin I use, and I’ve explained how exercise can affect things. I’ve explained that I need to carry sugar with me everywhere so I can treat a low. I’ve taken my time in broaching each of these topics, and I think that has worked well in our relationship. We mostly discuss the mechanics rather than the emotions and underlying stress diabetes can bring.

I see a therapist every couple of weeks. She and I mostly discuss my very complicated family relationship, but I’ve gone over some of the underlying stresses that diabetes brings into my life (health care costs, complication risks, etc.). These might casually come up in conversations with my boyfriend, but I try not to focus too much on them with him. It doesn’t seem like conversations like that actually end up helping me much. It’s much more helpful for me to discuss them with a third party or with people on forums like this one who have had similar experiences and have similar worries. Many of you already get why these things are concerns and understand all the factors involved.

Anyway, hopefully that helps a little! I think that feeling validation from people on this forum can actually help with your comfort level in other situations. I also think feeling in more control of your D can help with your comfort level.