As Insulin Nation’s editor, I feel like the ultimate lurker – someone who observes the inner workings of the Type 1 diabetes community from the edge of the room. In recent years, I’ve watched this community grow and mature by leaps and bounds to become an international force that has been clinically proven to help people with Type 1 diabetes in their self-care.
As an outside observer, I also have witnessed times when this group might have missed opportunities to grow even more as a community. With this in mind, I offer five suggestions of how the diabetes online community might remove some self-imposed hurdles.
1. Be offended with a purpose. A good third of Facebook posts on Type 1 diabetes seem dedicated to venting over public misunderstanding about diabetes; someone makes a joke that involves diabetes or confuses Type 1 and Type 2, and it frustrates the person posting. Their frustration is understandable, but it may be wasted energy. There are just too few people affected by Type 1 for the condition to be commonly understood by the general public, and no awareness campaign is going to reach everyone.
I am not suggesting that we should somehow stop being offended at ignorance over Type 1. Rather, I would like to see the Type 1 community target that rage at a more important target – a medical establishment that does not properly train all its doctors and nurses to diagnose and treat Type 1 properly.
Think about it – some ¼ of all Type 1 cases in the U.S. are diagnosed when the patient is suffering from diabetic ketoacidosis, according to one study. A more recent U.K. study found that the risk of diabetic ketoacidosis is greater in the hospital than during everyday life. This is simply unacceptable, and Facebook should be clogged with campaigns to change this institutional failing.
2. Do more than fundraise. It’s wonderful how many people turn out for a JDRF fundraising walk, but I would like just as much energy to be spent supporting Type 1 families after a fundraising event is done. We all want a cure as soon as possible, but while we’re waiting (and waiting) for that cure to come, there are families who need help right now.
Many studies show that a Type 1 diagnosis adds incredible stress to a family or a diagnosed individual. Wouldn’t it be great if we organized babysitting respite care and support get-togethers with the same gusto that we organized cure fundraisers? It would be nice for a diabetes organizations to fund grants to support efforts to create time banks or similar resources for the Type 1 community to support one another.
3. Realize that type is nothing but a number. It’s understandable that some affected by Type 1 would want to distance themselves from those with Type 2, since the two types of diabetes are so often confused, but I would argue that this might be like cutting off your nose to spite your face.
Not only does this distancing help ostracize others who are struggling with diabetes, but it diminishes the lobbying power of the diabetes community. Lobbying is a numbers game; if you don’t have enough people (or money), you aren’t going to get enough lawmakers to listen to you. The Type 1 community has the organizational skills, and the Type 2 community has the numbers; combine the two and you have a powerful lobbying force that could very well decide a presidential election.
4. Stop being so inspirational. It is great when you see one of the many articles that discusses how someone with Type 1 “won’t let diabetes hold him/her back”, but if those are the only stories the general public sees about Type 1 diabetes, it presents a one-dimensional vision of those affected by the condition. It also creates pressure from within to live up to a heroic ideal of the brave soul doing the “impossible” with Type 1; sometimes, it’s okay to be a crying mess because of Type 1, too.
I am proposing a fleshing out of the Type 1 identity. I would love to see more stories on every aspect of life with Type 1, memoirs filled with not-so-brave moments, and more humor. I want the diabetes community to share with the world how they live with diabetes, not just how they are brave with it.
5. Seek out diversity. When I’ve assigned reporters to cover Type 1 stories that focus on issues of health access for people of color, I’m appalled at how few support organizations we can find; I’m also frankly appalled how few clicks such stories get when I post them. There are strong organizations, like Tudiabetes, that work hard to reach out to people of color with Type 1, but there simply aren’t enough of them.
Study after study shows that people of color often have unique difficulties when it comes to access to quality health care, and that this can lead to worse medical outcomes. Not only would outreach to communities of color be the right thing to do, it would help swell the ranks and strengthen Type 1 advocacy.
These are my thoughts on how the Type 1 community can grow; what are yours? If you want to add to the conversation, or tell me to go jump in a lake, you can email me at firstname.lastname@example.org.
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