The adoption of a new, first-round tech was a frustrating failure for me back in 2018. I had been hoping that the six-month-old first closed-loop external pancreas system would help me get increasingly fluctuating blood sugars under better control. It didn’t, and I had to find another less-tech-dependent way, which I did.

At the time, I thought I would give the tech another try once things had settled down. I never did that. But recently, with the Type 1 diagnosis of a child close to me, I have been talking with the child’s parent about some of the research they have been doing. The experience of 30 years is very different from that initial flurry of research one does when first diagnosed. There were things the parent was learning that I might not know. One of the things that kept popping up was “looping”. I had never heard of it, but the parent said everyone was trying the new technique with controls of as many elements as possible and basically hacks insulin pumps to create algorithms that would keep blood sugars in a much tighter range.

Sounds good, right?

I have never been a particularly emotive person, at least not in public. My family was not a repressive one. We were never shamed for feeling what we did, and my mother used to tell us that we can’t help the way we feel, so don’t try. But medical issues have a funny way of messing with any attempt at being well adjusted.

My early experience being in a wheelchair gave me a visceral hatred of being the center of attention and the emotional swings associated with the medication I was taking then were a problem. They made me cry for no reason, which confused me, and I started to try not to cry ever. I made myself not care what people thought of me. And so began the foundation of what would become fairly impenetrable defensive emotional walls.

I recently listened to a podcast about the nature of advocacy from Hubbell Communications, which sponsors and runs The Chronic Disease Coalition, an organization I have been working with for the past few years. In the podcast, they talk about whether online advocacy is effective, or whether it is just an easy way to feel involved while avoiding a more substantive time and energy commitment. I agree with a lot of their points, but it also made me think about the nature of advocacy and how it has changed, as well as how patient advocacy is different from most other issue advocacy.

When I first came to Washington, D.C. 20 years ago, the established advocacy playbook still applied: gather people to put their voices behind a cause, assemble in a visible place to get the attention of policymakers and make your case to get their support. Some of the policymakers will already be inclined to support your cause, some won’t, but there were usually still pockets of policymakers that could be convinced. There was no online activism. There was barely an online.

Well, it appears I’ve saved the best for last. And if not the best, perhaps the most conflicted. While tTrust in myself is complicated but knowable, trust in providers is fairly straightforward, and the tension between patients and insurance is specific to the constraints of the industry.

Our feelings about the drug and device companies are more convoluted. To paraphrase a silly movie, it’s the duality of man, that Jungian thing, exemplified by Matthew Modine in Full Metal Jacket with a peace sign on one side of his helmet and “Born to Die” on the other.

For patients, the technology of the drugs and devices we depend on is a scientific marvel, and we are grateful for the chance to use them to improve and extend our lives. On the other hand, we feel like the companies that develop and sell these miracles of technology dangle them in front of us then yank them away through price hikes based on nothing more than what the insurance companies and the Federal government (through Medicaid/Medicare) will pay for it.

This week I want to talk about trust between patients and the healthcare industry, specifically insurance companies and drug/device makers. This is a delicate subject. It’s not a secret that there is tension between patients and these companies. We need both of these industries to survive but, at the heart of it, patients just don’t feel that they have our best interests at heart. Their primary goal is to make money. I get that. And they are very successful at it. But we patients feel like it’s often at our expense. In order for patients to receive the best care, this has to change.

Formative years are called that for a reason. My formative years were chock full of medical experiences. When I was young, trust was unconscious. I did not think about the role that providers played. That was my parents’ job. I was just supposed to follow directions and do my exercises and go to my appointments. The meningitis and resulting seizures, bumping into walls, and paralysis eventually passed, and later I would realize that my acute illness had gone unusually well. I had come out of it as normal as was possible. The doctors, nurses, and therapists, both occupational and physical, had been wonderful. They were my friends and worked almost as hard as I did to make me healthy. That’s all I knew. That’s all I had to know.

I have written before about my lack of trust in my own body. My body decided it was not going to work like everybody else’s before I was six, and it stopped doing a lot of the basics beyond the autonomic functions like breathing. For a long time, it couldn’t walk, it couldn’t run, and it couldn’t swim. It couldn’t write or use the bathroom without help or cut food to feed itself. Eventually, with the help of my family, we beat it back into working order (kind of like when you kick the vending machine enough times that it finally gives up the bag of M&Ms), but it left an indelible mark.

This blog post was originally published on May 22, 2018.

One of my friends recently asked me how best to manage a chronic condition.

During the transition between noncompliance and acceptance, I clearly remember that all I wanted was to get to the point where I could relegate my regimen to a tiny corner of my life. I would be “normal” and it would become so easy and routine that the whole thing would take up no more of my attention every day than, say, brushing my teeth. I’m here to tell you it’s possible!

Well, sometimes.

Look at anyone’s list of how to improve healthcare, and patient safety will always be mentioned. From overarching issues like overtreatment, undertreatment, and misdiagnoses, to the more granular ones like pharmaceutical mislabeling, hand-washing protocols, and illnesses contracted in the hospital, there are many issues that cause both harm to the patient and unnecessary costs because of delayed or ineffective treatment.

I have a few of these medical missteps in my own healthcare history.

When I was young, I was a bit of a drama queen (assisted by the drug cocktail I had to take to recover from meningitis). I remember crying at the drop of a hat, and my dad sometimes referred to me as “Sarah Heartburn”, a sarcastic reference to French actress Sarah Bernhardt, dubbed the "the queen of the pose and the princess of the gesture". As I got older and accumulated more conditions, I got to a point where I could suppress most of my emotions, for better or worse. Except for that one thing.

I am a catastrophizer. In my head, I can spin a minor issue into the end of the world.