A Chance to Connect With Others Who "Get It"

I had the absolute pleasure of attending the "Taking Control of Your Diabetes (TCOYD)" Conference here in San Diego this past weekend.  It's in its 9th year, and was my fourth time attending.  It is a great, empowering day for people to learn more and connect with others around diabetes, and I'm always happy to be a part of it.  Rather than try to explain what it's all about, here is a snippet of what a day at TCOYD is like:

Wonderfully, this year they had a "Type 1 Track", with workshops and content aimed specifically for people with type 1 (the people with type 2 had their own, unique track).  I was asked to help run a breakout workshop for spouses/partners (another first this year!)... and I was honored to participate.

It was encouraging and extremely validating to share my experience and to hear others' experience of loving someone with type 1.  It made me see how much we all have in common, no matter if our partners are men or women, in good control or not, have had diabetes 2 years, 10 years or 50 years!  The main commonality of course - the one that had everyone nodding in agreement - was the issue of anxiety ... our anxiety over lows, over our partner driving, over them being home alone with our small kids, over them being okay when we're out of town for work, over them taking care of themselves, over what the future holds... etc... I'm sure you all know what I mean.  

Other issues came up as well, particularly with the older participants in the group (although this is still relevant for us all) - for example, how to advocate for your partner to maintain control of their insulin delivery/glucose monitoring if they're in the hospital (and help them advocate for themselves)?  We also talked about strategies to be prepared for lows, and best ways to help our loved ones in those moments that they can't take care of themselves.

I think that some of the best discussion came when we started to talk about ourselves, and our own self-care, which often goes to the way-side when we spend so much time worrying about our partner's needs.  Oftentimes this can be a weight that we carry that we do not communicate... because why would we?  They're the ones dealing with the diabetes, not us, right?  However, we also need to realize that type 1 is difficult on us too, and there is no better place to express that than in a supportive group of people who "get it".

For me, one of the biggest parts of this journey of type 1 diabetes in the last 15 years has simply been figuring out my role, and how I fit into the picture.  This was another issue that seemed to resonate with the group.  How much "control" do I take?  How can I best partner with my husband to make this work?  How much involvement does he actually need?  It's nice to know that others feel the same, and talking about solutions and sharing thoughts is always incredibly helpful.  I am grateful to the participants of the workshop (and their brave spouses/partners with type 1 who came to join us!) for being open and sharing their own experiences.   

One other thing I want to make sure to mention is that the wonderful non-profit organization the Behavioral Diabetes Institute (who I've referred to many times, since I know the founders and have been involved with it since it's beginnings... and which really is the only organization that deals with peoples' unmet emotional and psychological needs around diabetes), is finally developing an online support program for spouses (I am thrilled)!  However, to make this the most impactful and useful program they can, they need your help!  The diabetes psychologists behind the program's development (the fabulous Drs. Bill Polonsky and Susan Guzman) have created an online survey to gather as many spouse's/partner's feedback as they can to customize the online support program... and they would welcome (and need) your input!  The survey only takes about 10 minutes to fill out, and is wonderful - I've already taken it and given my feedback.  You can find the survey here:

http://behavioraldiabetesinstitute.org/Just-For-Partners-Program.html.

Please do fill it out and let your voice be heard.   It will only help!  The more support out there we can create for us spouses/partners, the better.

I look forward to hearing from you!

Casualty of Diabetes: Silliness

In the 15 years since my husband Tony developed type 1 diabetes, there have been many ways that the disease has infiltrated and affected our lives.  Most of these things have been obvious, and include much of what I've shared in this blog ... the anxieties, the work it takes to maintain balance, the challenges that daily living with diabetes takes, from both our sides.

It took me a while to realize that there was something else that had changed in our lives post-diagnosis  ... it was very subtle, but I realized that I missed it very much.  

Silliness.

Yes, silliness. The ability for Tony to loosen up and be silly, be spontaneous, be goofy ... without me automatically feeling that need to go on the defensive, check his pupils, question his sugar level. At certain times this need is magnified - for example if alcohol is involved.  However, it is true at any time, regardless of where we are or what we are doing.   What a sad thing for him to lose that feeling of spontaneity, that ability to have fun without having his intent or mental status checked!  What a sad thing for us as a couple to lose that innate sense of fun that we had before he was diagnosed, that sense of ease with loosening up and being in the moment.

It struck me that this may be a quiet, disconcerting thing for a lot of us spouses... and that we may mourn the loss of this in our lives more than we realized.  At least that's true for me, and I'm sure it's true for my husband.

The question of course is how to combat the feeling of loss that may accompany this experience.  How do we build in ways to get past our own anxieties and read any given situation for what it is?  How do we best communicate with our partners to try and understand where they are at?

Unfortunately I don't have any answers on this one... but I'm sure that some of you may!  Feel free to comment and share some of your thoughts or strategies on how you've managed this in your own lives.  We'd love to know.

Taking the Plunge

Since we have diabetes in the family, my husband and I have decided to take our two children, ages 4 and 9, to the TrialNet event here in San Diego tomorrow, where they will be screened for the antibodies responsible for the development of type 1. Not only will we be contributing to a very important study on how to prevent, delay and reverse the progression of type 1 diabetes, we will be finding out some critical information on our own kids' likelihood to develop the disease.

But I'm petrified.

It's not logical, I know ... but as a mother I am terrified to find out whether one of my beautiful children has the markers that mean they will develop type 1 diabetes in the next 5 or so years. Sometimes the fear takes over rational thought... the idea of such little people having to deal with this disease on an hourly basis makes me want to weep. And I know that my husband feels the same way... and even moreso, because if one of our kids does test positive, then somehow he feels it is "his fault", since his genes are the ones bringing diabetes into their lives...

However, my husband and I are choosing not to stay in the fear, not to bury our heads in the sand, thinking that not knowing is better than knowing. Five years ago perhaps - when there wasn't anything out there to DO with the knowledge ... then yes, we would have had a reason to avoid the information. But now, with the advances in research and the clinical trials out there that are helping if not to completely prevent the onset of type 1, to postpone it by a number of years, we have no excuse not to do this.

And so it is time to face the fear ... to take the plunge. Hopefully our children will be one of the 96% of family members of people with type 1 who do not test positive for the antibodies (96 people out of 100 test negative), and all this fear will be a moot point.

But if they do test positive, or one of them does, we will face it the same way that we faced my husband's original diagnosis 15 years ago - together, with strength, and with positive action.