My Diaversary - What is your D identity?

So July 8th will be my five year diaversary - hard to believe it's been that long! But in a way it hasn't. As some of you know I was misdiagnosed type 2. I knew I had Diabetes by my symptoms and asked for a blood test. It was only a month until I was due to retire and move to Guatemala. I was told I had Type 2 Diabetes and put on several oral meds. I had a single visit with a dietician/cde and I said, "I eat very healthy; I haven't had sugar in 13 years and I'm a vegetarian." She agreed that I probably didn't need to change anything. She was wrong of course; as a vegetarian I ate lots of rice, pasta, potatoes and bread. But I took my meds, ate whatever I wanted, tested a couple times a day and my numbers were good.In general, I was very little affected by my Diabetes. My life was rich and full with my Central American adventure and Diabetes had little impact on me.

Fast forward 15 months and suddenly the stable numbers started going up. My doctor switched my meds around and the numbers still kept going up. I started to realize I needed insulin but didn't know why as I had read that Type 2's could go a decade or longer before needing insulin. I started researching and ended up on TuD. All my research led me to recognize that I was Type 1 (LADA). I had one visit to an endo in Guatemala who had never heard of LADA but confirmed my list of five things that told me I was Type 1.

Once I got clear on my real diagnosis and began my insulin journey everything changed for me. I wasn't upset by being Type 1, I was relieved because it made sense and I could now treat my "real" condition. I learned about carbs and started changing my diet. With no medical guidance to speak of I immersed myself in learning how to manage my type 1 myself. I found this wonderful community and I felt a sense of pride.

When I worked in the AIDS epidemic in the 80s I learned the phrase "People with AIDS" (PWA's); today we use the phrase "People with Diabetes - PWD's". I have always agreed with the idea that saying I'm a person with diabetes (or a person with type 1) is better than saying "I'm a diabetic" because it is not all of who I am. But...there is also that sense of pride. Pride isn't exactly the right word. In Mental Health we talk about a client who has "bought in": they are accepting of their diagnosis and involved in their own treatment..and, therefore they are empowered. There are plenty of diabetics who are not "bought in" - they either ignore their D or do what the doctor says without questioning much. When I thought I was Type 2 I wasn't "bought in". Please understand I'm not making a Type 2/Type 1 breakdown. I think there are people of both types who are bought in and empowered, and people of both types who are not. That's just how it played out for me.

So when I started to think about my upcoming Diaversary I realized it feels more like I began my current journey with D when I started on Insulin and when I determined my correct diagnosis (between February and April 2009 - nearly two years later!). But which date I celebrate my Diaversary isn't that important to me and the first date is as good as any. What is important is the whole idea of identity and being bought in and empowered. So that's the question I have for all of you. Do you feel you are bought in to your D identity? Did that happen right away or was it a process?

I suspect I'm bought in, I don't even think about it as something other than something to keep out of the way of my life. Whether it was rock and roll and partying, back in the late 1980s/ early 1990s or running these days, I've had hobbies to define myself with more than being "diabetes guy".

1985...March...April, Im sure my mother would have a more precise date. It's not something I regularly keep up with either, other than every now and then as I get closer to that 30 year mark.

Great point, AR. It's so important to nurture other aspects of our lives, so that even if we are completely bought in, it doesn't become all of who we are!

How do you feel your D is a part of your identity, Christy? (Not to put you on the spot or anything!)

My attitude towards it has been a lot like AR...I dont want it defining who I am, I am SOOO much more than someone with diabetes, and I mean I know it needs to be controlled and that does require effort on our part, but when people see me I don't want to be defined by my illness or have pitty from others. It's a part of me, but I make it a small part of me.

I work in health care so I like to think having faced a lifelong illness makes me more empathetic perhaps, and I hope encouraging to people that they CAN rise above being diabetic and can still have their dreams, hopes for the future, and with some dilligence on their part, so many of our hopes and dreams CAN be accomplished despite our illness. I think when anyone lets themselves become defined by a illness, disability, etc it just puts barriers and limitations on your life, and life is to short NONE of us are guaranteed tomorrow, I want to live life and experience it to the fullest.

Thank you so much for your great answer, Christy. I think you are a great role model in the health care field.. Ironically, working in Mental Health for many years before my D diagnosis I used to use Diabetes as an example to reduce stigma and show people with mental health issues that they had a treatable condition. That is that their mental illness, like D was a condition they had and not their fault and that as long as they did what was needed to treat their condition they could live a full rich life.

Needless to say when I used that example I had no idea that managing D was fully as complex as managing mental illness!

If today I was magically "cured", I would still wake up every morning for the rest of my life thinking that I have to check my bg and take my insulin. I would feel naked if I left the house without a bg meter and strips in my pocket. I would continue visually counting carbs in every meal just like I've done for 30 years. I guess that means I'm bought in :-)

I don't think that means that I'm defined by diabetes. Just that it's a total reflex to do all the above.

Haha yeah I hear you, I think I could um eventually learn to ditch the meter and the insulin, but I think also the overall healthy lifestyle tips...eating right, watching what we eat, I would HOPE those habits would stick with me, even if tomorrow I was "magically" cured. LOL.

For those of you who have been diagnosed for so many more years than me, were you always bought in or was there some turning point that made it happen? When I had my Type 1 Women's Group where there were women who had been diagnosed at children or teens it seems like many of them had a period of time that they definitely weren't bought in. So I'm curious what made it happen?

There's very much different levels of bought in. Just because I would never leave the house without a bg meter in my pocket, doesn't mean I won't eat a piece of cake when I take the kids to one of their friend's birthday parties (and then bolus for it).

While I would never leave the house without a meter (fear of hypos) and don't think twice about testing or shooting up anywhere anytime, I know others who are completely bought in diet-wise but who would never test their bg or take a shot other than in private. Maybe that's not so much "bought in" as "in the closet"? Maybe I'm "out of the closet" but not quite "bought in" because I will eat cake and bolus for it? Maybe eating cake and bolusing for it just indicates that I'm "completely bought in"? I'm not really sure.

It's not that I carry my meter because I'm a "good little diabetic" but maybe because it lets me "cheat" where cheating is defined by the strict rules of "compliance"? Note I put that in quotes too! "Compliance" to the low-carbers here means eating less than 30 grams of carbs a day. "Compliance" to others means eating meals at only the exact right times and taking only the number of units that the doc says. By either of those standards, I'm very non-compliant. But I depend on my meter to get me through!!!

Already past the 35 year mark, but it is only quite recently that I can honestly say I bought in. In fact for too many years I just did what I was told without questioning. Then in November at my semi-annual endo appt, I asked a question about playing tennis on Wednesday nights and how I didn't want to take insulin and eat before playing, but that tennis was from 6:30 to 8 pm and dinner just didn't fit in to the schedule and by the time I was done playing my bg was getting high. The endo wasn't particularly useful, but the CDE gave me some good advice and I have since learned a lot from her besides how to fit tennis in between shots etc. While I still have a lot to learn, I feel much more in control and yes empowered would be a good way to put it. But it sure didn't happen overnight for me, more like over a lifetime.

To me, "compliance" (hate that word) is the direct opposite of being bought in! I think the whole definition of bought in is making our own decisions about what works well for managing our D as well as how we definite good management.

That's great, Clare! It's hard to be open to new learning when you've been doing something a certain way for so many years!

Oh I have had my moments during my teenage years of just total rebellion, not wanting to test, just half ■■■ taking my medications, eating whatever I wanted to eat, and really its truly by some good grace I'm not just full of complications. I think for me, it was just a matter of knowing for myself if I wanted to continue to live, and be free of complications I had to do it. I'm not totally strict on diet. If I want a piece of chocolate or birthday cake when we celebrate our monthly birthdays at work, Im not going to deny myself that. BUT I also know one small piece lol and dont go back for seconds and thrirds. I think it would be nice if we all had great support groups, and I think truly as a child diagnosed with D, had something like this been around then like it is now, I probably would have acted right and done right earlier on. I can't do support groups or camp. It;s like when I did weight watchers, lol I had to do it online. I don't want to go and be part of a group and whine and listen to other all complain about how "fat" they are. I'm not knocking it, and if it works for others that's great, we all have to find what works for us. But I love online support such as this, its just a finger click away when we need it. But I don't know...I dont get that annoying vibe like I did from the few "group" meetings I've been too from places like this. We all have to find our own way and what works for us. It's not a matter of one way being right or wrong, its a matter of what works best for the individual. I think honestly more than anything this site has brought me in more than anything.

Hey, Sally. considering the ambiguity and the frustration of your situation, I think you do amazingly well!

Yep, I know what you mean. I talked about figuring out my true diagnosis with help from TuD (among other places), but I think you are right that it was more than that: It was finding that I belonged here.

I am lucky though because I also started a Type 1 women's group that was amazing (and still is, though I've moved away and miss it!). Sure sometimes there was whining (we're all there at times), but there was a lot more of laughing and caring and understanding. If it's the right group, there's nothing like the support of being with people who truly understand.

I agree I am sure there are some wonderful groups out there. I think just unfortunately the few I've been too, I've walked away less than impressed. But there is nothing like also being able to have people who know EXACTLY what you are going through because they are in that same boat as well. No matter how much support we may have from friends or families, no one really knows what its like but another diabetic.

Congratulations Zoe! Cheers! Joanne

Thanks, Joanne!

I pretty much ignored my D for around 20 years or so - I was busy raising my kids, working, and well, just living!

I rarely tested, very rarely saw a doc - didn't have an endo until 4-5 years ago. I just took my 2 shots of NPH/R a day, and just went on with my life. I swear, NPH is the devil's insulin. I had a ton of pretty bad lows with it, but only had the paramedics called a couple of times.

In late 2006, I had my first A1c (that I'm aware of). It was 9.8! I decided I had better get serious, and I started true MDI with Lantus & Humalog. A couple of months later, I was at the annual ADA Expo in Denver and saw the most amazing thing. This guy was wearing a deal on his belt that told him about what his BG was all the time!

I decided that I had to have that stuff, so within a few months I was pumping with a CGM. Since then, I've gotten a lot better with my BG's - my A1c at one point was in the high 5's (but I'm back up to the mid-7's - grrrr).

Anyway, it's possible to live fairly normally without having 'bought in'.