T1D

Last night, I spoke to a small group of parents of athletes about type one diabetes management and exercise. Everyone was engaged and the sharing that came out of it was incredible. I’ve missed doing these discussions, which were frequent in the pre-pandemic days.

One mother of a teenager was there in person (the others attended via Zoom), and after the session ended she hung around for a while and we talked about diabetes tech. Specifically, my experience growing up without the blood glucose monitors, CGMs, and insulin pumps that are common now for those who can afford them.

I had shared that experience after a couple of moms talked the difficulties receiving blood glucose numbers when their kids were on the field or in the gym and separated from their phones, which act as the receiver. I took a deep breath and said something along the lines of, “If you can’t see uninterrupted numbers, it isn’t the end of the world.” I talked about my experience playing sports without the technology that exists today, and how I managed without. I pointed out that technology can fail, and having a backup plan in place for when it does–and it will–is critical.

The technology is wonderful and life-changing, and it has an emotional price that this mom and I talked about. CGMs allow sharing of almost-real-time blood glucose numbers with others, and this mom used to track her son’s numbers on her smartwatch. She felt anxiety every time the numbers rose or fell. Her son resented feeling like he was being surveilled.

This isn’t the first time I’ve heard a similar story, but how she chose to deal with the tension wasn’t what I was used to hearing. She chose having an emotionally healthy relationship with her son over obsessing over his numbers. He stopped sharing data, he’s doing just fine, and mom is enjoying the time with him before he goes away to college.

She hasn’t wiped away all the anxiety that comes with being the parent of a kid with diabetes, but she’s done something that more parents should: Recognize that there’s a psychosocial cost that comes with 24/7/365 monitoring, and make an affirmative choice about how and when to use it.

UPDATE (3/12/20): Due to the spread of COVID-19 this event has been postponed. A conflict with another event will prevent me from speaking at the rescheduled summit.

I’ll be at the Type One Nation Summit in Winston-Salem, NC March 21, speaking about exercise and type one diabetes. No Powerpoint slides, I swear. Just sound information. Bring questions.

Aside from me, there will be a lot of big brains at the Summit. Whether you or someone you know is newly diagnosed or a veteran of managing T1D, there will be plenty to learn. Register here.

Some background for those wondering “what’s a Dexcom?” and “why should I care about a ‘Share’ outage?”: Dexcom manufactures a popular continuous glucose monitor, or CGM, that allows people with diabetes who wear it to monitor their blood glucose levels in almost real time. It reduces the need for manual BG checks using a glucometer, provides advance warnings of low and high blood glucose events, and can interface with a popular insulin pump model to partially manage delivery of insulin. Dexcom’s Share server allows their CGM users to share blood glucose data with friends and family, so that others can remotely monitor them using a smart device. Share has been down for much of the Thanksgiving weekend, and to put it mildly, a lot of people are not happy. 

Online service outages happen, and the more essential they are to our daily lives, the more angry we are when they happen. We’ve come a long way from the days when the worst that could happen was a website going offline. Online services are more deeply embedded in our lives, and the consequences of outages are – or in some cases feel – more serious.

A couple of suggestions for Dexcom

Companies that deliver essential online services, and I’m looking at you Dexcom, would do well to remember two cardinal rules:

• First, be clear with users about whether you are delivering a core product or a secondary service. As the anger over the outage spread, I began to think about the nature of Dexcom Share and whether it can be classified as one of Dexcom’s core offerings, or an add-on service that supports the primary product (their G6 CGM). The messages are mixed. It’s part of a very expensive product set (and I know – I just dropped a lot of money for G6 sensors and a transmitter), but it’s free to use. IMHO, anything that’s free – email, social sharing, etc. – is a crapshoot in terms of reliability. A paid service also comes with the right to complain when things go wrong. But here, we have a free-but-essential service. See the potential conflict?
• Second, communicate in a clear and timely way. Look at the screenshot below. It says everything about the poor quality of Dexcom’s messaging, and the confusion it’s creating. The timeliness of updates on social media isn’t any better.

Rush to judgment

In the type one diabetes community, everyone’s journey is different. My experience as a person who has lived with diabetes for 43 years is radically different than that of the parent of a newly diagnosed child. I managed my diabetes for years without access to a glucometer, using pork insulin; new initiates to the diabetes community may have access to insulin pumps, CGMs, more sophisticated types of insulins, and other treatments, drugs and tools, including Dexcom Share. That’s their normal, and it informs how they deal with the disease. I may not necessarily understand the venom that’s directed at Dexcom, but I understand that it’s coming from a place of concern about loved ones and the feeling that something they depend on has failed them.

But here’s something that needs to the mentioned : Access isn’t the whole story. Tools to manage type one are expensive, and the majority of people with type one diabetes aren’t able to afford them. Relying on Dexcom Share implies that the user has a privilege that many can’t enjoy.

Many who enjoy that privilege took to social media to vent their frustration with Dexcom and assign blame for the outage. The frustration is understandable, but the conjecture wasn’t helpful or constructive. Suggesting that Dexcom doesn’t care about their users, isn’t properly staffed to deal with an emergency, hasn’t paid for reliable cloud infrastructure, and demanding a full accounting of what went wrong –while it’s being repaired – doesn’t solve the problem.

We all need to vent, but as a customer I’m more interested in knowing what went wrong and how the company plans to prevent it from happening in the future. If the answer isn’t satisfying, that’s the time to press the case with Dexcom and maybe consider moving to another solution. The latter step admittedly isn’t easy because of the few available CGM options, which is driving some of the online anger.

But if the tech is essential to keeping someone alive, venting is the least constructive thing to do in the moment. If there’s not a Plan B for a tech failure, health care providers can help. Facebook comments are a distraction.

This is going to happen again

There will be future outages. If not Share, with some piece of technology that lessens the burden of type one. I’m not going to offer advice about how to respond to those failures. My circumstances (pump/CGM user who doesn’t Share) are probably different than those of many reading this. But regardless of how you or I respond, everyone with type one needs to have constructive plan to manage the disease when technology fails. We can’t press pause while we wait for some piece of tech to start working again. We have lives to live.

Disclosure: I’m a longtime Dexcom user, but other than giving them a lot of cash over the years I have no relationship with the company. So I can say whatever I want, within limits.

I wrote this article for Heidi Armstrong’s Injured Athletes Toolbox. Heidi is a friend and tremendous resource for athletes who are struggling with the mental aspects of an injury.

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This was my July: Recovering from a bicycle accident that left me with a broken clavicle and rib. Suddenly, I couldn’t ride my bike, and couldn’t run or engage in any of my other normal activities. A long, unhappy summer stretched out in front of me.

My recovery had one additional component: Type one diabetes, or T1D. I was diagnosed 42 years ago, and though I’m active, healthy and free of complications, T1D casts a shadow over the recovery process. Athletes with T1D can face distinct physical, emotional and spiritual challenges related to our disease. Understanding those challenges and learning how to adapt to them are essential to not only becoming whole, but maintaining health during the recovery process.

Those Pesky Numbers

Type one diabetes is a numbers game. Good health demands monitoring blood glucose (BG) numbers and the quarterly A1c, which provides insight into average BG numbers for the past three months. Regular exercise is a critical part of maintaining stable BG numbers within a target range. Athletes with T1D who are regularly active have a higher, more consistent sensitivity to insulin. This consistency removes some of the unpredictability about T1D from decisions about how to manage insulin, nutrition and activity.

Eliminating exercise triggers a series of cascading problems. Insulin sensitivity decreases; more insulin is needed to have the same affect. This can throw BG management off until the athlete recalibrates their bolus and basal doses to adapt to a lack of activity.

Athletes have to immediately adapt to this change in sensitivity following an injury. Whenever possible, they should look for opportunities to build mild activity into their recovery plans. Even a twenty minute walk following dinner can have a profound impact on increasing and stabilizing insulin sensitivity, and managing swings in BG. And, transitioning back to a normal training routine will be easier to manage if the athlete takes steps to stabilize insulin sensitivity.

Apart from keeping BG in range, athletes with T1D need to be conscious of other physical complications. In the case of my clavicle injury, keeping my arm in a sling placed me at risk for adhesive capsulitis, or frozen shoulder, a common complication from T1D. My recovery plan included progressive stretching as soon as I was able, to maintain my range of motion.

The Emotional Side of T1D

The emotional side of T1D is less understood than the physical side, but it’s coming into clearer view for those who study the disease. Athletes can see training and competition as essential to their health and well being. Take those things away, and depression and stress may take their place.

Both have a powerful impact on athletes as they navigate the recovery process. They also have a physiological effect on athletes with T1D. Stress triggers the release of counter regulatory hormones that increase blood glucose. These episodes can be intermittent or ongoing. Either way, they can lead to a roller coaster of high and low BG, complicating management.

How we manage the emotional side of T1D is as individual as the athlete. For me, focusing on interests that had been sacrificed to time on the bike and reconnecting with friends were two tactics that helped me manage stress while I recovered this past summer. More than distracting me, those activities felt productive and fulfilling.

Time in recovery gave me time to think creatively about new projects. Difficult as it was, when I realized that I would spend at least six weeks not cycling, I embraced the opportunity to do deep work that I had been putting off, and appreciated the value of having uninterrupted time to think and plan.

Like everyone who goes through recovery from an injury, I had my tough days. The best antidote for those was to rest on the couch with my dogs and read a good book. 

When an Injury Becomes an Existential Crisis

T1D is a chronic disease, and there can be a dark outlook associated with it. Those of us with the disease are aware of the possibility of possibly fatal complications, diabetic ketoacidosis , and life threatening hypoglycemia.4Injury can cause an athlete with T1D to suddenly confront, in a tangible way, evidence of their fragility and mortality. It becomes an existential crisis that threatens our identity as athletes and shakes faith in our ability to manage the disease.

That’s the spiritual side of recovery. Athletes with T1D can respond in several ways, including: Meditation or other contemplative practices, turning to faith, or despair. July and August were an opportunity for me to press pause on a busy life and use my time to be intentional and ask big questions about my goals as a cyclist and how the sport fit into my life. Even when a powerful sense of fragility was staring me in the face, I could look at the answers from those big questions and see a path back to wholeness.

Don’t Neglect Your Team

I’ve read here that recovery is a team effort. That’s particularly true for those with T1D. Injury brings the importance of having a team into sharp relief. I’m fortunate to have a network of athlete friends with T1D who I can call on for support, health care providers who understand and encourage my cycling, and family and friends who stand behind me. Having that team, before I ever needed them to help me though my injury, made all the difference.

Notes

• Type one and type two diabetes are distinctly different diseases. For information about T1D read http://www.jdrf.org/about/fact-sheets/type-1-diabetes-facts/. 
• A BG of 90-120 is a typical target, though this can vary depending on the individual and their activity. 
• Basal insulin is either fast acting insulin administered in tiny doses via an insulin pump, or slow acting insulin injected once or twice a day. Bolus insulin is a single dose of fast acting insulin given to counteract food that is consumed. 
• Diabetic ketoacidosis, or DKA, is a result of extreme uncontrolled high blood glucose. Hypoglycemia is low blood glucose.