Yesterday afternoon the phone rang. I checked the caller ID, saw it was South Jersey JDRF office, and went back to what I was doing, mostly because I just hate talking on the phone. I was half-listening to the message she was leaving as I sat in the next room twittering. It was a volunteer I didn’t recognize looking to find out if I was planning to go to a forum they’re hosting on mentoring families. The National Outreach Coordinator is coming to talk to forum attendees about how to better serve families who contact JDRF, families that largely tend to have newly diagnosed children.
I can’t quote the message because I stupidly told Jason to erase it, so I’ll have to paraphrase. She asked if I was coming to the forum so I could learn how to better help families new to diabetes by sharing how my family manages my diabetic child’s experience dealing with things like school. I sighed, rolled my eyes, and thought to myself, “That’s why I’m not involved like I used to be.” It must have never occurred to her that I might be someone other than a parent, and to me, that reflects the culture of JDRF where T1 adults don’t count or might as well not exist.
Many moons ago, when I was in my 20’s, and I was a diabetes train wreck, there were multiple times that I reached out to JDRF looking for support. I wanted to find other adults with T1, I wanted a support group – I wanted to not feel alone. This was clearly before the DOC as it exists today, back when the online resources just weren’t what we know now. Blogging existed in some form, but I didn’t know about it, so the only way I knew to find real people living with diabetes was through JDRF. They were useless. I think there were times I called, and didn’t even get a return call. I guess if I were a better person, I wouldn’t harbor bad feelings about that, but I do.
Then in 2005, I was looking to connect with other diabetics again. This was around the time I finally stopped all of my eating disorder behaviors, and I wanted some real life diabetes relationships to help me stay on track because I was on the cusp – one foot in the midst of doom and muck, and one foot that was free and trying to pull the other foot loose. I had found online support in MySpace diabetes groups, rather serendipitously after signing up on MySpace to get a little insight into my teenage clients. Those diabetes groups were instrumental in my recovery from my eating disorder, but I wanted some real life support too so I called JDRF looking for adults with T1. Based on my previous experience with JDRF, I didn’t expect there to be much, but I was motivated to change that. I wanted to help make JDRF an organization for all T1′s, not just parents with D kids.
What followed is that I never really found those adults I was hoping to find. I was immediately recruited for the upcoming Walk that year, and I did the Walk three years in a row, serving as the Family Teams Chairperson in ’06 and ’07. I wanted to start a group for adults so I joined the Outreach Committee not long after the first Walk (technically, not my first Walk – I had done one with a different chapter some years earlier), but because the office rarely got calls from adults looking for support, and the committee was focused on other projects, the group I envisioned never materialized much to my disappointment. I did get linked with the group of moms with D kids that I occasionally meet for breakfast, the Diabetic Moms as I call them, despite the misnomer.
I guess if I were a truly altruistic person, I’d just volunteer for the sake of helping those families. However, I found that a lot of families didn’t necessarily want to connect with me. My gut feeling was that they didn’t want to hear about the bullshit that comes with having ‘betes for 30 years, either because that was more information than they could bear, or because they truly believed their kid would be cured before they could even live with diabetes for that long. Regarding the latter, I tried to respect that they needed to believe a cure was on the horizon because I think that’s the only thing that makes living with diabetes even marginally tolerable for lots of families.
However, I happen to think it’s ethically questionable that JDRF makes the “5 to 10 more years” claim to families because people tend to believe it, especially when they haven’t spent years reading enough articles about cured mice to make their eyeballs fall out of their sockets. I couldn’t stand to pretend like I really thought a cure would be in my future, but as the Family Teams Chairperson, I was supposed to tell people to donate because we were “this close”. I might as well have been trying to sell a car without disclosing that it was missing the engine. I felt like a liar giving those families the same false hope that I had been given as a kid, and look how well that turned out.
I got involved with JDRF hoping the relationship would be symbiotic. I really needed support just as much as I was motivated to give it, but the support I had hoped for didn’t exist, and ironically enough, I felt even more alone than I did when I first reached out to them. Luckily by that time, I was doing well and had found other sources of support so whether or not they had appropriate resources didn’t matter. So after being actively involved with them for almost 3 years, I started to pull away.
This actually ended up being an exceptionally long piece, so I’ll post the second half tomorrow. This seemed like a good place to stop for today, and just happened to be at the midway point, so I hope you’ll check back tomorrow for the second half. Thanks!