It's hard to put a price on the support we all get from wonderful partners and spouses who stand by our sides during the diabetes journey each day.
Yep, diabetes can complicate relationships, as we all know -- and the more recognition of that and the more help we can get, the better.
My longstanding go-to resource for this has been the Behavioral Diabetes Institute (BDI) based in San Diego, which years ago created the popular diabetes etiquette cards for loved ones and a few years ago developed an educational program that's in the process of being built out even more.
We've also enjoyed sharing stories of spouses and partners through our own Partner Follies series here at the 'Mine. And it's been great to have two special people in own my life -- my wife Suzi and my dad Larry -- both share their stories in guest posts through the years.
Today, I am happy report on a wave of new resources and programs being created or expanded to focus on partners and spouses.
And since today is actually my wife Suzi's birthday, this post is dedicated to her. (Happy Birthday, Sweetheart!)
Diabetes Partner Research
Suzi and I recently participated in a new research study happening at Indiana University and sponsored by Baylor College and the T1D Exchange, focused on general diabetes quality of life for partners, spouses and family.
Nationally, 296 people are participating in the study and a majority of us -- 192 to be exact -- are involved in the first phase being conducted by Dr. David Marrero, who happens to be a longtime type 1 who focuses on diabetes research and also serves as president of the American Diabetes Association's Health and Education division. The rest of that group are kids and teens being interviewed in Texas.
In the first part of this Helmsley-funded study, the trio of doctors are holding focus groups and interview discussions about how diabetes affects our lives and relationships.
The next phase will involve creating quality of life questionnaires and testing those with a large, nationally representative sample of about 1,800 people from the T1D Exchange Clinic Registry. Ultimately, the aim is to produce a set of standard questionnaires about the experiences and quality of life of people who have or who care about someone with T1D that can be used by doctors and researchers as a key outcome of treatment studies.
Thanks to our recent move back to Michigan Suzi and I weren't able to join the in-person focus groups at Indiana University. Instead, we each took an hour of our time on a recent Sunday to talk with the researchers by phone. The questions began with general background, but then we delved into some mighty personal stuff about how we communicate and issues we face when it comes to diabetes impacting our marriage.
I found that talking openly about these issues helped me cement some things I need to keep in mind about keeping my partner in the loop (if you will). Often, I choose not to dwell on the less-than-happy aspects of my health and therefore don't communicate as much as I probably should. That's something this study helped me recognize, as well as a sense that in general, our Diabetes Online Community (DOC) really should be more open about discussing topics like intimate relationships, men's health and the psychosocial effect all of this has on our loved ones.
Looking forward to seeing how this materializes, and what comes from this research once it wraps up in 2017.
Type WE (Just for Partners and Spouses)
A few months ago, we reported on the changes happening with the Students With Diabetes group led by fellow type 1 Dr. Nicole Johnson, who many may recognize as Miss America 1999. SWD announced formation of a new umbrella organization called the Diabetes Empowerment Foundation that would be taking over many of their activities, and adding new programming that includes partners and spouses.
Now that group has introduced a new program called Type WE, unvieled at the recent annual meeting of the American Association of Diabetes Educators (AADE) in New Orleans. Nicole was manning a booth and handing out information about Type WE.
It appears Type WE is offering something called a "Distress Scale" designed to assess what diabetes issues may be causing the most problems, what's behind the distress caused, and then suggesting tips and strategies for dealing with those issues. It's a 10 to 15 minute anonymous questionnaire online, and it's part of the Just for Partners program created in conjunction with Dr. William Polonsky, who heads the BDI.
The Just for Partners program developed by Nicole's Bringing Sciene Home group is apparently now in full bloom under the umbrella of the Diabetes Empowerment Foundation. Great stuff!
Research shows the need for this kind of programming, according to Type WE data:
- Depression and diabetes burnout are significant concerns for partners
- 90% of partners of T1Ds have had to provide life-saving care in a low blood sugar emergency, yet only 26% have received formal training in diabetes care
- Emotional strain is real. T1Ds diagnosed as adults grieve the loss of a “normal life.” As a result, emotional adjustment is a challenge because partners express difficulty in “coming to terms" with life with a chronic illness, including complications of the condition
- Extreme low blood sugars are traumatic and leave partners feeling helpless and fearful for their T1D partner’s safety
It's definitely important that we have tools for those in our life who love and support us, and it's great to see Type WE developiong a communications channel and resource hub to that end.
It's exciting to hear that the non-profit Children With Diabetes, which hosts the annual Friends For Life conference at DisneyWorld each July, is expanding what it offers for partners and spouses. They first introduced a partner track a couple years ago, the first year that Suzi and I attended, and from what I hear that lineup was very popular, and is being built out for next year as we speak.
We asked D-Mom and FFL organizer Laura Billetdeaux from Michigan about this, and she tells us:
"During FFL Orlando 2015, there were a couple of discussion groups specifically for spouses/partners of T1 adults. Feedback was very positive, but suggested that we have just scratched the surface of programming for this group of participants. We are working on the 2016 program now, and considering some of the topics, speakers, and facilitators that were suggested in the post conference feedback. Stay tuned!"
Just as exciting is the Diabetes UnConference, which kicked off earlier this year and will be held twice in 2016 -- first in Las Vegas in March, and then in Atlantic City in September 2016. Both of those will include a partner and spouse tract for the first time, we're told by UnConference creator Christel Marchand Aprigliano.
She says: "There will be a few sessions in which all attendees share thoughts together (PWDs and so-called Type 3s), but many will be private so that those who love us can talk about the things they can't talk about publicly (or even with their spouse): fear of complications and/or death of the PWD, caregiver burnout, intimacy, day-to-day life with a PWD, parenting, etc. These sessions will be facilitated by peers -- fellow T3s who understand how important it is to have face-to-face conversations in a safe space."
We're very excited and appreciative to hear about all these efforts to address the needs of spouse and partners. We need to love and support their diabetes empowerment, as much as our own!