The Human Trial, a documentary

This is a such a moving documentary and I hope it’s watched by everyone who has been touched by diabetes.

In 2011, Lisa Hepner and her husband Guy Mossman heard about a radical stem cell treatment for diabetes, a disease that shockingly kills more than five million people each year. Driven by a desire to cure Lisa of her own type 1 diabetes (T1D), the filmmakers were given unprecedented, real-time access to a clinical trial – only the sixth-ever embryonic stem cell trial in the world. What follows is an intimate journey with the patients and scientists who put themselves on the line to be first.

Diabetes and Social Media

I was diagnosed with type one diabetes in 1985. I was 14 years old and just six weeks into my freshman year at a boarding school about an hour and a half from home. I have a terrible memory in general, but I’ll never forget the day I was diagnosed because it divides my life into “before” and “after.” Before was good and after was bad, but 34 years later, as a 51-year-old woman, I can’t even remember the “before,” can’t imagine my life without diabetes. It almost seems like part of the transition from childhood to young adulthood, like mom no longer reading to me every night before bed or dad making circle shaped pancakes instead of unicorns or dolphins. 

So much has changed since 1985, but I’m not talking about the multitude of changes with diabetes technology (closed-loop pumps, CGMs, insulin pens), I’m talking about social and emotional changes that have come about because of the internet. In 1985 the only person I knew with diabetes was my younger sister who’d been diagnosed six months before me when she was 10 years old and the difference in our ages felt vast. 

When I returned to boarding school (mom tells me I insisted on going back even though as a parent I can’t imagine how or why they agreed), the only other person with diabetes was Lillian, the head nurse. I’m sure it was comforting for my parents to know there was a professional medical person on campus who understood the challenges of diabetes, but it was terrible for me. What 14-year-old wants to be associated with an older woman who was never seen without her white uniform? A woman who lectured me about “not using diabetes as an excuse” when I went to the infirmary to ask for a note to miss class because of a bad low blood sugar episode. It was bad enough that when I told people that I had diabetes they’d nod their heads in recognition and say, of yeah, my grandmother has that. It made me want to scream.

This was pre-internet so I had no access to the world beyond my front door. If there were other 14 year old girls like me struggling with diabetes, I wasn’t aware. I was desperate for role models who were young and active and pushing past any diabetes related restrictions. But the only media reference I had was the American Diabetes Association (ADA) magazine that somehow always featured an older, out of shape person on the cover with stories about complications, which only compounded my feelings of isolation. I was the only one at school who had to prick my finger, squeeze a drop of blood onto a test strip and wait 60 second for the result; the only one of my friends who drank diet coke and never ordered fries and a milkshake from the “Snack Shack” after study hall. There were no peers to ask for advice on managing low blood sugars during a field hockey game, no peers to commiserate about telling your date that you have a chronic illness and if you start acting funny to hand you a package of starbursts. It felt like I was the only person in the world with diabetes and it was incredibly lonely. 

Social media changed all that. Anyone who has been diagnosed in the digital era knows they are not alone because all they have to do is log into Instagram, Twitter, Facebook or even just do a search on Google. Social media posts from and about people living with chronic illness make the invisible visible. “normalizing chronic illness”

Research Pros and Cons

Pros:

Peer Support Through a Diabetes Social Media Community

“Insights gleaned from this research can be applied to a wider network of online communities and chronic diseases as a way to foster peer support. People who understand the lived experience, whether they are a caregiver or person living with the disease, are experts in their own disease management and often have valuable strategies of self-management to share with others. Some patients with chronic disease may feel isolated if they do not have others in their social circle who understand the nature of their condition on a deeper level, and online communities are a powerful tool to bridge the gap of peer support beyond their geographic confines.”

Research examining “peer support” in online communities is positive. What Are PWDs (People With Diabetes) Doing Online? A Netnographic Analysis

“Findings indicate that social media provides a significant source not only of moral support and camaraderie, but also critical education on thriving with diabetes. Importantly, we observed strong evidence of peer influence on patients’ therapy and diabetes technology purchasing decisions.”

Social Media in the Diabetes Community: a Novel Way to Assess Psychosocial Needs in People with Diabetes and Their Caregivers

“Participation in DOCs appears driven by a need for psychosocial support, unmet by providers and the healthcare system, as well as a sense of duty to provide it to others.” 

Social media has produced a vast quantity of inspirational, admirable role models with diabetes. Ironically, I think the biggest downside of social media is the lack of representation of those of us who are less than perfect. Just like everything else on social media where everyone is beautiful and having so much more fun, pwd online are showing their best selves. 

Cons:

The fact that social media has been shown to negatively impact a person’s self esteem, increase anxiety levels, and spread health misinformation are important drawbacks  that warrant their own separate conversation.

I don’t want to return to the days where the only visible pwd were Wilford Brinley types (no disrespect) but it would be helpful to have a little of both. To let those with A1cs on the higher end of the spectrum know that numbers/results have nothing to do with your value as a human being. I think in order to feel fully seen, we need to show our whole selves, our light and dark selves, our happy and sad moments because finding a community doesn’t need to require any kind of approval or entrance exam. We need to embrace pwd of all stripes; pwd who are managing with mdi and pwd who are the first in line for the latest technology. 

Social Media forums

 Popular Instagram Hashtags 

  • #LiveBeyond
  • #t1d
  • #diabadass

Popular Twitter hashtags

  • #DIABETES
  • #DOC
  • #BGNOW
  • #LIVEBEYOND
  •  #INSULIN4ALL

The Mind-Body connection…

I just read Peggy Orenstein’s essay in this Sunday’s, The Way We Live Now section of The New York Times magazine called, “Stress Test, Why Americans want to believe that our mental states can control our physical maladies.” In the essay, she talks specifically about infertility and breast cancer as illnesses that are falsely managed though the “Mind-Body Connection.”  Orenstein says, “I suspect women today may be particularly vulnerable to placing the locus of illness in their heads rather than their bodies. In part that’s because the causes of the ailments we’re prone to-reproductive cancers, arthritis, fibromyalgia-are often mysterious in origin. But it may also be an artifact of our rapid and and successful social progress.”

kids and syringes

The other night Miles, my 7 year old, was rummaging through our junk drawer looking for spare change. He has a piggy bank and is saving money for Gormitis, his latest obsession, and knows his dad frequently drops change into this drawer. The drawer is a mess, full of pencils, coupons, keys, change, small toys, batteries and diabetes supplies. the drawer opens out of the island in the center of the kitchen where the boys sit to eat. On top of the island is where I keep my “shot bag,” a small zippered bag that contains my blood testing machine, strips and lipstick (for fun). So I keep my syringes and test strips in the junk drawer because it is easily accessible. It’s never been a problem until now.

Miles is a curious boy, I should establish that first. He is a day dreamer and a talker and has a vivid imagination and while he was rummaging through the drawer, he picked up the bag of syringes and began to mess with them. It didn’t take long before he figured out how to take the top off the syringe. Meanwhile, the rest of us were in the livingroom watching tv and reading the paper. Suddenly I heard a yelp from the kitchen. Miles had stabbed himself in the finger with my syringe.