I’m a T1D cyborg — and proud of it.
By: Jan Schenk
Tags: Diabetes

I’m a T1D cyborg — and proud of it.

The graph of a blood glucose wave over the course of 24 hours. The graph is mainly in it’s ideal range, between 80 and 170 mg/dl. It also shows several Super Micro Boluses (SMBs) after regular meal boluses.

T1D stands for Type 1 Diabetes. That means that my pancreas doesn’t produce / produces way too little insulin. Insulin is required for metabolism to make energy available to any cells in your body. 100 years ago, I would have died from this disease. Today, the state of medicine is quite good.

Diabetes is a chronic irreversible disease. That means a person with diabetes will need to treat their condition as long as they live. And learn how to adapt to live with the treatment. Diabetes always with you. It doesn’t appear in seizures, or waves of pain, like other chronic diseases. And you can’t take pills and things get better for a period of time.

As said, the state of treatment is good. But not as good as it could be. Let me tell you why.

It is important to understand what it takes a T1D to treat diabetes. People with type 1 diabetes need to control their blood glucose (sugar) level manually. They need to be aware of the amount of carbohydrates (starch and all kinds of sugar: dextrose, fructose, glucose, maltose) and fats they are going to eat. And they have to inject insulin, depending on their therapy, per pen or insulin pump. These essentials, in the truest sense if the word, make people with diabetes decide to do crazy things. They hide it, to not get stigmatised, or hurt other people’s feelings or get anxious.

They decide not to eat.

They decide to always — always — eat the same.

They decide to not treat their disease.

They decide to hide away the injection areas of their skin.

They decide to not participate in social events.

They decide to cloak their disease.

While none of these behaviours make sense, people with diabetes still do them. To avoid stigmatisation, mostly. They don’t want to look different, get treated differently, make others anxious, or not get that job because they have a disability. Type 1 diabetes is an invisible disability, like so many other disabilities. (Statistics show, that only 25% of people with a severe disability are using assistive devices. Worldwide, 1 out of 10 has a severe disability. https://invisibledisabilities.org/what-is-an-invisible-disability/. You can ground check your own filter bubble: do you know 1 person with disability for every 10 persons you know?)

For a very long time, 21 out of 23 years of living with diabetes, I also decided to not go public with my T1D. I cloaked it, even to my mother, for several years. (The relationship with her broke up during the time of diagnosis, and after we reestablished contact two years later, I couldn’t tell her. As I thought she might associate it to what had happened between us. Diabetes has always a trigger. You’re predisposed to developing T1D. But there’s something triggering the “outbreak” sooner or later in life. And the consumption of sugar is never a reason for developing T1D.)

I mistreated myself with too little blood glucose monitoring (only once a day, if at all, instead of 3–4 times a day). I wildly guessed carbohydrates, didn’t calculate meals, let myself slip into low sugar conditions to eat sweets. I missed out on quarterly appointments with diabetes health care. I didn’t even have a dedicated diabetes health care team (i.e. a diabetologist). And I didn’t talk to anyone about it. I just pretended to myself that this is the normal thing to do.

I’ve been stupid, all the way up and down. And I’m lucky to still be alive.

The change of mind came with my professional work, where I decided to invest myself also in matters of D&I (diversity & inclusion). I work at a Tech company, a bigger one, as you might have seen from my profile, and I was already working there, when a massive shift in culture took place. This top-down shift dealt with D&I a lot, and addressed one of the main problems of the Tech Industry: leaving out on so many opportunities for qualified professionals, women, people of color, LGBTQI+ people, and people with disabilities. To put it brief, I learned a lot. And one of my learnings was that it is everyone’s responsibility to take care of enlightenment. As that solves several issues where they are rooted.

So I decided to put my own disability to public. I posted it to my Twitter profile, I took it to my D&I talks as a personal story, and I stopped cloaking it in many daily opportunities. I talked to people, but still with a certain reservation. Not calling it a real disability. Diminishing T1D to be an easily manageable disease. I think I still did a lot of things wrong.

Today, I’m a proud T1D cyborg. This means I have closed the loop of the treatment of diabetes. I have an insulin pump, a sensor that constantly measures my blood glucose level and transmits that data to the cloud, a self-built device that draws that information from the cloud and lets an algorithm decide on whether to administer insulin to my body or not and instruct the insulin pump to do so or to reduce the basal rate. My blood glucose wave has improved (“flattened”) since I started closing the loop a few weeks ago. I replaced the malfunctioning part of my body with a technical device, hence the cyborg. And putting it that way, it’s kind of cool. I can be special in a way that is desirable. Kind of. At least it sounds cool, and I can motivate others, hopefully, to do the same.

Because my treatment has improved drastically in the last weeks. But that’s not due to the health care system in Germany. Not because I took better care of myself. It wasn’t because my M.D. told me to change my treatment.

It was because some very smart people started to talk about their disease. With others. In an open and unfearful way. Those persons founded the open source project #OpenAPS (Open Artificial Pancreas System) and started the #WeAreNotWaiting movement (https://openaps.org/). All of this would not have happened if they cloaked away their T1D to only happen in private. It wouldn’t have happened if these people, instead of striving for improving the treatment, developed behaviours to go with the standard and think it’s enough. These smart people improved the life of hundreds, maybe thousands of others, who are taking care of their condition themselves as well, maybe finally also not hiding their disease and decide to contribute and donate their data. And these smart people founded a community of contributors to sustainably and collaboratively work on the underlying algorithm oref0 and take it to a next level of treatment with its successor oref1.

Dear community of smart and open T1Ds, I want to thank you. Not only for improving my condition, but for the learning that publicly speaking about a condition improves the situation. Not only for a single individual. You rock!