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Seeking PWD Peers.

Two weeks ago, I was in Vienna for the third annual European Animas Blogger Summit.  (I’m a blogger, and I have a working relationship with Animas.  Only missing the European part, and I can’t even pretend because I was once told that my attempt at a British accent was akin to Dick Van Dyke’s Mary Poppins attempt.  So, no.)  Other folks who were in attendance have written about their impressions and take-aways, but the discussions we had can’t be concisely covered in a blog post.  It would take several blog posts.

So, in keeping with that theme, this blog post is centered around one of the discussions that embedded itself into my head:  connecting with PWD who are living with type 2 diabetes.

It started with a conversation about the #walkwithd campaign.

“The Walk with D campaign is about showing people what diabetes is really like, peeling back the stigma and reinstating dignity.  We do this already through blogs and Twitter and Facebook updates and all of the photos we share with our community and society as a whole.  The hashtag is simply a way to link some of these discussions, and to share more.  But, in looking around the room, I see a lot of kindred spirits who are dealing with type 1 diabetes.  Where are the type 2 voices?”

I don’t know much at all about life with type 2 diabetes. Sure, I can look it up on dLife or WebMD or some other resource that gives a high-level definition of type 2 diabetes, but that doesn’t give me a sense of what it’s actually like to live with type 2 diabetes.

My lack of perspective used to be rooted in straight up ignorance.  Diagnosed with type 1 diabetes as a child, I actively sought to separate myself from my type 2 peers because I didn’t want people thinking “I did this to myself.”  And I have to put that statement in quotes because it’s such a crummy one, now that I know so much more about the differences and similarities between all types of diabetes.

It’s difficult to talk about how I felt when people lumped type 1 and type 2 together.  I’m embarrassed to admit these things.  The diseases are different in their origin but so similar in how they map out physically, and more importantly, emotionally, and I wish I had known that earlier.  I wish I had been more supportive of my type 2 peers.  I wish I had known how they felt.

And that’s the part I truly want to better understand.  How does it FEEL to live with type 2?

Rachel at Refreshing D was one of the first people who had type 2 diabetes who I really got to know.  Through her columns at dLife, her blog, and through becoming friends, I had a reliable window into life with type 2 diabetes.  I don’t know if I can properly articulate how much she has taught me, or thank her for being brave enough to share her story.  With Rachel as my gateway to understanding type 2 diabetes, I connected to and learned from people like Travis, Sue, Kate, and Bob.  People who live with diabetes – just not the type I’m familiar with – but who I need to better understand in order to best understand this community.

“I wish more people with type 2 would raise their voices.  How can we encourage them to?  How can we empower them to?”

The discussion during the blogger summit was frustrating in that none of us had a clear answer, but we realized that the responsibility for creating an empowering and inviting environment was on the DOC, both globally and in our respective countries.  We, as people with type 1 diabetes, are smaller in number in society but we tend to dominate the Diabetes Online Community, and I think it’s up to us to help pave the way for people with type 2 diabetes to feel comfortable coming out of their diabetes cave and sharing their perspectives.  Stigma runs rampant regarding diabetes, but we can help change it from the inside by getting to know our peers.  Finding what unites us can help us better understand one another as people and can help us all feel like we’re part of a community that has our back.

If you’re living with type 2 diabetes and you’re reading this post, please share your journey.

I walk with diabetes, but I don’t walk alone.  And neither do you.

12 Comments Post a comment
  1. Lorrian #

    Hi Kerri!

    I’m living with Type 2 , diagnosed 10 years ago just after turning 40.

    Thank you for acknowledging the bias that those of us with Type 2 can face. It’s been hard to find a community that doesn’t split those with diabetes into groups, and it’s been hard for me to see the misinformation and misunderstanding that is out there, in the media, or even in a D community, about Type 2.

    Yes, I’m overweight. Yes, I’ve been overweight most of my life. Yes, I spent my 20s-30’s battling an eating disorder…but I didn’t ‘give’ myself diabetes. Unbeknownst to me, I had a family history – one that my Mom didn’t even remember about until a few years AFTER my diagnosis (‘you know, your Grandpa had a little bit of diabetes’).

    So, I too was born with a faulty gene, too, but it didn’t show up until far into my adult years. Did any of my actions hasten the failure of my beta cells? Probably. But that doesn’t mean I ‘deserve’ diabetes – and that’s often how I’ve been made to feel.

    Food has been an ‘enemy’ nearly all of my life…and just when I thought I’d finally made peace with food, I was diagnosed Type 2 and so the battle continued.

    The year before my diagnosis, my primary care physician called me after my annual physical and told me that my blood work showed that my ‘sugar is high’ and I ‘should watch it.’

    Watch my sugar? What did that mean?

    The next year, I was rocking a 13.1 A1c. That same doctor gave me a sheet of paper about low carb diets, a prescription for a med that ended up causing some scary hypo episodes (chugging fruit juice in Costco), and told me to ‘call me after you pick a meter.’ That. Was. It. No referral to an endo or a CDE, nothing about how to pick a meter, just turned me loose.

    I realize now that general practitioners are that – general – but the lack of support and education was scary.

    Thankfully, a coworker who also had diabetes showed me how to use a meter and a coworker of my husband’s referred me to his endocrinologist. So I picked a new doctor in addition to a meter. 🙂

    After a decade living with Type 2 diabetes, I’m finally starting to accept that:

    1) I don’t ‘deserve’ diabetes, despite how the media can portray the condition
    2) Food can be enjoyed and not be the enemy
    3) Exercise is my friend, not only in lowering my glucose levels, but stress levels as well
    4) Continuous Glucose Monitors rock! (I’ll be joining the Cloud this weekend)
    5) Being my own advocate for my health care is empowering (and can be frustrating)
    6) Testing and/or dosing in public is my right, and can often end up educating others
    7) I am MORE than just a number, even as those numbers (weight, A1c, glucose level)can rule my life at times

    I’m a long-time reader and your blog has helped me navigate some frustrating, scary waters. Thanks for listening. 🙂

    Lorrian Ippoliti
    Long Beach, CA

    09/29/14; 3:09 pm
    • I am so glad you’re here, Lorrain. We’re here for you!!!!

      09/29/14; 3:36 pm
    • Lorrain, I’m learning more about T2D because a friend has been diagnosed and it makes me crazy how bad the stigma is that is attached to a T2D diagnosis. I’m glad to hear you’re advocating for yourself & have started to educate those around you as you test at dinner or out in public. Hang in there!! You can do this!!

      10/3/14; 12:18 pm
  2. Joy #

    I’m a parent of a T1 kid, but I really enjoyed this discussion. We should be empowering and helping each other. Thanks for opening the door to build up the community.

    09/29/14; 4:29 pm
  3. John Olson #

    Hi Kerri,
    My name is John and I was diagnosed with type 2 diabetes on the 18th day of October 2007. It was not my first introduction to diabetes, several people in my family have had it, although, they all had type 1. All but one lived a somewhat normal life, my niece had to be different, and she passed away when she was 22 about 33 years ago. You may be wondering what this has to do with anything. I have always been taught that you have to know where you’ve been to know where you’re going. The snobbery of the type 1’s is a somewhat recent attitude, say in the last 15 to 20 years. I would say that a very good share of it is coming out of blogs, I would have to say ignorance is to blame, plus a good share of laziness thrown in, mostly because it does not directly affect them. You name the reason, because I honestly don’t know the answer to that one.
    I don’t have any answers, just some thoughts on the subject. I was diagnosed with type 2 and you with type 1. You, with type 1 treat your diabetes with diet, exercise and insulin and perhaps some other meds. And I on the other hand with type 2 treat my diabetes with diet, exercise and insulin and another med, Metformin (my liver likes dumping lots of glucose, metformin controls it). And, yes type 1’s are also prescribed it. Now you can see the difference in the types, granted some type 2’s use diet, exercise and meds or some combination of the 3 and my diabetes is different than most type 2’s as I am not insulin resistance. My pancreas is kaput just like yours, your beta cells were attacked by your immune system and killed off, mine died off for reasons yet to be determined. (I might add here, I am not grossly overweight (10 lbs.) and as I was in the past and I still am quite active ) About 38 % of type 2’s fall into this group. And, yes I know, lots of type 2’s are grossly overweight and perhaps have a problem with food or an eating disorder. There is also a huge population that is fat and lazy that doesn’t have diabetes and will never have it. Even the AMA is finally coming to the realization that that assumption is incorrect. We as humans have to have someone to put the blame on. Being on insulin makes my management much easier, just before I went on insulin my blood sugar got into the 380 to 400mg/dl area a few times and no way to get it down, all times I was at about 80mg/dl and had a 20 to 30 carb snack and wham bam 380 and climbing also started spilling ketones a few times. I still get highs and mostly there my fault, not all. I also know what 20mg/dl looks like on my meter and the thing said low a few times. All I really know is that the difference in my diabetes and yours is that my diabetes is mine and yours is yours and that they are both the same but different, not better or worse just a bit different and that difference should not define us to each other. We are both fighting a common enemy
    Kerri, I wish you well
    John
    I have read this blog for a long time and enjoy it very much, Thank You

    09/30/14; 3:52 am
  4. Carmen #

    Keri,

    I’ve been reading your blog for about one year now. Thanks for posting this. I was diagnosed when I had my 40 year old blood work done as a Type 2. Everything I read at the time lead me to believe that I had caused it or at least hastened it by a very American diet (heavy carb) throughout most of my life. I went through a period of diabetes burnout about two years ago and wasn’t getting my regular blood work done. Consequently, I was getting ill often and feeling apathetic a lot. So, my new years resolution Jan 2013 was to get strict again with my diet and up my exercise. Despite all of my best efforts my a1C climbed. Then, in April my general practitioner decided to refer me to an endocronologist after a well woman visit landed me in the emergency room because I had very low blood pressure and my heart was racing. Turns out I had a stomach virus hit me that night. I decided to keep the referal to the endo. Armed with my previous blood test results I went to my appointment. He decided to run a few more tests because the only thing amiss in my bloodwork was the glucose and my wieght is in the normal range. The result – LADA, Type 1.

    So, for 5 years I lived as a type 2. I have to admit that I was relieved to know that I hadn’t caused my diabetes. It wasn’t until all of my reading since then that I realized how big of a misconception this was. The mechanism responsible for the intense carbohydrate cravings when our blood sugar drops so drastically after a spike is true culprit.

    For example, think of how hungry you are when you are coming out of a low. Your brain is taking drastic measures to keep you alive and you have to crochet to avoid overeating. Now imagine that you have no clue that you’re diabetic and don’t realize your blood sugar is spiking through the roof after a couple of slices of pizza. Two hours later you are desperately hungry because your brain thinks you are in crisis after a drastic drop in blood sugar despite the fact that it is now normal. Meanwhile, you are feeling the need to shove whatever, preferably sweet, carb into your face you can get your hands on knowing you shouldn’t even be hungry yet. Enter guilt. Enter wieght gain. Enter excess belly fat which leads to more insulin resistance. Enter high sugars. Enter tiredness. Enter no exercise. Etc…

    The only reason we type 1’s stop ourselves from overeating to correct drastic drops in blood sugars is because we are monitoring the situataion. After a spike if we get ravenous when we have that drastic drop but are in the normal range according to the meter, we wait or take more insulin and wait if we want a snack..or we crochet…or whatever.

    It is too common that type 2’s don’t have access to Endocronologists, especially in the beginning of their disease when they only hear “bad, bad, bad.” How many more could more effectly manage their illness knowing it wasn’t their fault?! This illness has a huge emotional weight regardless of type so starting out with positives seems a better way in my opinion. The stigma needs to be removed. Obesity has many causes but as far as type 2 is concerned it is also the effect.

    The subject of having more type 2’s speak out is, I believe, rooted in the fact that there is much too much self-blame in their world. Type 1’s are primarily freed from that stigma amongst those who grasp there are different types to begin with. We scoff and comment how ignorant people are when they make assumptions about our food choices or exercise amounts. When the same comments are made to a type 2, they feel shame and guilt. Why whould they want to speak out when it is clearly something they “did to themselves and now don’t have the self control to manage.” Obviously, these are sterotypes. But sterotypes exist for a reason. There is truth in sterotypes however unjust.

    I don’t have an answer to getting type 2’s to share in the DOC. I suppose it starts with this; Compassion. Despite all of our misconceptions when all is said and done compassion rules.

    Thanks for having that compassion Keri. Thanks for posting.

    Sincerely,

    Carmen
    Wife, Mother, Daughter, Sister
    Living with 4 Type AWESOMES!
    Type 1.5 – LADA

    09/30/14; 9:36 am
    • Carmen #

      PS – Yikes! Sorry for all the typos. Hadn’t quite finished my pot of tea this morning :).

      09/30/14; 10:58 am
  5. Anne #

    Kerri,

    I was diagnosed two years ago as a Type 2 at the age of 26. I agree with the other comments, access to an Endocrinologist early on was difficult. It took me 3 months of Lantus before my PCP suggested I see one and another 3 months before I could even get in for an appointment. 6 weeks later, I was on a pump. I hate that because I am overweight, it is assumed that I did this to myself. I hate that because I have Type 2, it is assumed that I chose this disease. If anyone out there picked this, I’d like to meet them, because it sucks. I will continue to participate in #WalkWithD and cannot wait for November!

    Thanks,
    Anne

    09/30/14; 5:23 pm

Trackbacks & Pingbacks

  1. #WalkWithD: John's Story. - Six Until Me - diabetes blog
  2. #WalkWithD: Lorrian's Type 2 Experience. - Six Until Me - diabetes blog
  3. #TypeAll | Diabetogenic
  4. Care What the Community Thinks, not What the Community Buys. - Six Until Me - diabetes blog

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