At last count, my chronic and recurring conditions sit at 13. Unless I tell them, no one would know I have even one. Every chance I get, I drag the experience of all these conditions into the spotlight through networking and conference participation because I hope that representing patients through my own experiences will help decisionmakers and innovators keep us in mind as they attempt to fix our broken healthcare system. I don’t think I have ever not been the only patient voice in the room.

At one conference I attended recently, there was a cool little feature that allowed attendees to network 1:1 for a few minutes. I really enjoyed it, and it was unexpected since the conference was virtual. In one of the sessions, the randomizer paired me with a pediatrician. I liked her. She had said some interesting things during one of the breakout sessions. I mentioned, almost offhand, that it was difficult to pipe up sometimes as the only patient voice, and sometimes I am not sure how contrary to be.

There have been a few new diabetes diagnoses among my friends and family lately, and it got me thinking about the uniqueness of diabetes as a disease. It’s hard watching my friends go through the realization of how all-encompassing it is because there is little I can do to help. They have to come to terms with it on their own, and the longer it takes, the higher the risk of a negative impact.

Part of that realization is that diabetes is not a condition that can ever be set aside. It’s not like my other conditions that affect only one part of my body, like when I take a pill once a day and my asthma is stable or I use orthopedic inserts and my plantar fasciitis stays quiet. No, diabetes is 24/7 vigilance. If a diabetic isn’t careful, diabetes has the potential to affect every system in my body…

I recently attended a conference that had one of the best methods of patient inclusion I have come across. They started with a patient forum on the day before the conference started. Half a dozen patients talked about different biases in medical diagnostics, based on their experiences and that of family members. As the conference focused on improving diagnostic practices to protect patients, it was a fitting way to start the discussion. The patient presence did not disappear after that, either. Every day kicked off with a short patient experience story and there were sessions geared toward fostering discussion between patients, researchers, and clinicians.

This is exactly how we begin to bring the patient voice forward and incorporate patient experience in a way where it shows up in policy and the structure of research studies (not just the research itself).

This week, I attended the Society to Improve Diagnosis in Medicine’s Patient Summit and Diagnostic Error in Medicine 14th Annual International Conference. Unless you are terminal, diagnosis is the most highly fraught time in the life of a disease, and if it’s wrong or delayed, it costs lives. We talked about many types of disparities: gender/sexuality, racial, age-based, even body type. And as we discussed, it occurred to me that there was one missing: the diseases themselves.

I have been discriminated against, mainly because I am a woman, but also because I was “too young” to have X, a kind of reverse age discrimination. None of my other demographics fall into common discriminatory categories. Except one.

I am a patient.

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.